October 2009
Miscellaneous – WASHINGTON, D.C. - Under unanimous consent, the U.S. Senate passed a resolution sponsored by U.S. Sen. Jim Inhofe (R-Okla.) designating September 13, 2009 as "National Celiac Disease Awareness Day". The designation is designed to help raise awareness about the disease.
"There are many groups and organizations working to promote Celiac Disease awareness, and I applaud all their efforts," Inhofe said. "This terrible disease impacts an estimated 2.2 million Americans and thousands of Oklahomans, and many of these individuals are currently undiagnosed. Awareness can go a long way toward diagnosing and treating the millions of suffers of celiac disease both in my home state of Oklahoma and across the nation."
Celiac disease is an autoimmune disorder and a malabsorption disease that creates an intolerance to gluten, a protein found in wheat, rye, oats and barley, as well as some medicines and vitamins. When exposed to gluten, the villi of the small intestine are damaged, interfering with the absorption of nutrients. Other problems can occur as a result of damage to the small intestine, including malnutrition, anemia, lymphoma and adenocarcinoma, osteoporosis, miscarriage and congenital malformation, and short stature.
Celiac disease is also linked other autoimmune disorders such as thyroid disease, systemic lupus erythematosus, type 1 diabetes, liver disease, collagen vascular disease, rheumatoid arthritis and Sjögren's syndrome.
Gling.com is an online resource for people allergic to gluten, a protein found in grains, to share recipes and find nearby stores that stock gluten-free products. Gling is an online hub for information on living gluten-free. His wife and son are both gluten intolerant and despite a plethora of information on the Internet about gluten-free diets, he couldn't find a single site that combined recipes and shopping resources with an online community for his gluten-free family.
"Information that doesn't give you anything real to do is very discouraging," Lee said. "The goal for Gling is to give somebody a site where you can sit down for five or ten minutes and find things to make and what to buy and where to buy them in your neighborhood."
Such new tools can't come fast enough for consumers. Only one in every four adults in Clark County gets the full recommended serving of fruits and vegetables every day, according to county health data.
"People do need information, it's really hard to tell anymore what's a health food and what's not," said Tricia Mortell, nutrition and family wellness program manager for Clark County Public Health. "We're flooded with 2,000 new food choices a year, so it's gotten very hard to figure things out."
www.zeer.com lists over 30,000 gluten-free items in their data base and new items are added weekly. According to Tiffany James who reported this for The Examiner, “the service is easy to use and contains an incredible amount of information about the gluten-free items they include in the program. Is something certified to be gluten-free? Is the product made in a dedicated gluten-free facility? Even the status of products being made on shared production lines is listed. MSG is called out on the labels, even though MSG is considered to be gluten-free in the U.S., many people avoid it for other reasons.”
Tiffany reports that the only drawback was the monthly fee of $4.95 a month! That’s still good news for gluten-free consumers
Reasors Gluten Free grocery store tour upcoming tour dates - November 17th and December 15th. Both of the tours will be held at Reasor’s in Jenks and will start at 6:30pm. You can register on-line at www.reasors.com (under ‘Health and Wellness’, then ‘Nutrition’, then ‘Supermarket Sense Shopping Tour’), or you can call Lara Munding Veazey, MA, RD/LD, CPT with Nutrition Consultants of Tulsa, LLC 2021 S Lewis Ave Suite 325 Tulsa, Ok 74104 www.nutritiontulsa.com at (918) 749-9077.
Holiday brunch - We are still looking at December 5th at 11 AM. We are still looking for a location. I only had 1 reply as to the $5.00/person charge to get in & that person thought it was fine (VOTE). I also only had one person reply with a suggestion of another place to hold our brunch. So if we still have it this year this is what we will need: You can go to the website at www.csatulsa.org and we will have a sign in sheet for the food and for non-cooking people take donations for the paper goods like last year. www.csatulsa.org
Medical - October 8, 2009, Immune system link in celiac disease, bone loss, By CBC News
People with celiac disease may be more susceptible to osteoporosis because their own immune system attacks their bone tissue, a new study suggests. Previously, it was thought that people with celiac disease may be more likely to develop the bone-thinning condition because they may have problems absorbing calcium and vitamin D from their diet. The two nutrients are key to the development of healthy bones. About 20 per cent of celiac patients produce antibodies that target a key protein called osteoprotegerin that maintains bone health, Scottish researchers reported in Thursday's New England Journal of Medicine. The result is rapid bone destruction and severe osteoporosis, Prof. Stuart Ralston of the Institute of Genetics and Molecular Medicine at the University of Edinburgh and his colleagues found. "Not only have we discovered a new reason to explain why osteoporosis occurs in celiac disease, but we have also found that it responds very well to drugs that prevent bone tissue removal," Ralston said in a release. The antibodies against osteoprotegerin were found in three of 15 patients with celiac disease, but not in 10 healthy controls or 14 people with autoimmune hypothyroidism. Several of the researchers reported relationships with pharmaceutical companies or patent applications involving osteoprotegerin antibodies for a diagnostic test and treatment.
Body Mass Index in Celiac Disease: Beneficial Effect of a Gluten-free Diet - This study was co-authored by Peter Green, MD, and investigated body mass index (BMI) and effect of the gluten-free diet (GFD) on BMI of celiac disease patients in the United States where obesity is a systematic problem. Findings were that compared with national data, females had lower BMI (21.9 vs. 24.2) and fewer were overweight (11% vs. 21%); more males had a normal BMI (59.5% vs. 34%) and fewer were underweight (9.1% vs. 26.7%). The study concluded that “a GFD had a beneficial impact on BMI, underweight patients gained weight and overweight/obese patients lost weight. The improvement in BMI adds to the impetus to diagnose celiac disease. Expert dietary counseling may be a major factor in the beneficial effects we noted. Source: J Clinical Gastroenterol. 2009 Sep 23 www.pubmed.gov
ScienceDaily (Sep. 7, 2009) — It was nine years ago that University of Maryland School of Medicine researchers discovered that a mysterious human protein called zonulin played a critical role in celiac disease and other autoimmune disorders, such as multiple sclerosis and diabetes. Now, scientists have solved the mystery of zonulin's identity, putting a face to the name, in a sense. Scientists led by Alessio Fasano, M.D., have identified zonulin as a molecule in the human body called haptoglobin 2 precursor.
Pinpointing the precise molecule that makes up the mysterious protein will enable a more detailed and thorough study of zonulin and its relationship to a series of inflammatory disorders. The discovery was reported in a new study by Dr. Fasano, published the week of September 7, 2009 in the online version of the Proceedings of the National Academy of Sciences. Dr. Fasano is a professor of pediatrics, medicine and physiology and director of the Mucosal Biology Research Center and the Center for Celiac Research at the University of Maryland School of Medicine.
Haptoglobin is a molecule that has been known to scientists for many years. It was identified as a marker of inflammation in the body. Haptoglobin 1 is the original form of the haptoglobin molecule, and scientists believe it evolved 800 million years ago. Haptoglobin 2 is a permutation found only in humans. It's believed the mutation occurred in India about 2 million years ago, spreading gradually among increasing numbers of people throughout the world.
Dr. Fasano's study revealed that zonulin is the precursor molecule for haptoglobin 2 — that is, it is an immature molecule that matures into haptoglobin 2. It was previously believed that such precursor molecules served no purpose in the body other than to mature into the molecules they were destined to become. But Dr. Fasano's study identifies precursor haptoglobin 2 as the first precursor molecule that serves another function entirely — opening a gateway in the gut, or intestines, to let gluten in.”
50% of Type 1 Diabetics Show Adverse Immune Response to Wheat - Scientists at the Ottawa Hospital Research Institute and the University of Ottawa have uncovered what looks to be an important clue regarding the causes of type 1 diabetes. A research team led by Dr. Fraser Scott recently screened 42 patients with type 1 diabetes and found that nearly half showed an abnormal immune response to wheat proteins. Dr. Scott is a Senior Scientist at the Ottawa Hospital Research Institute and Professor of Medicine at the University of Ottawa. The research team includes Dr. Majid Mojibian, Dr. Habiba Chakir, Dr. David E. Lefebvre, Jennifer A. Crookshank, Brigitte Sonier and Dr. Erin Keely. In most people, the immune system functions normally, identifying and attacking dangerous foreign visitors, like viruses and bacteria, without harming healthy body tissue or other benign molecules, including food molecules in the digestive tract. The breakdown of this process contributes to the development of various autoimmune diseases and allergies. In the case of Type 1 diabetes, the immune system wrongly targets the cells of the pancreas, the organ responsible for regulation of blood sugar. Globally, diabetes afflicts nearly 250 million people. Type 1 diabetes, the most severe form of the disease, makes up about 10 percent, or about 25 million, of that worldwide total. There is currently no cure for Type 1 diabetes, and sufferers require daily insulin injections can help control blood sugar levels. Dr. Scott’s results offer the first suggestions that T cells in the immune systems of type 1 diabetics are also more likely to have adverse immune reactions to wheat. His results also suggest that such over-reaction is tied to genes associated with type 1 diabetes. According to Dr. Scott, the research suggests that "people with certain genes may be more likely to develop an over-reaction to wheat and possibly other foods in the gut and this may tip the balance with the immune system and make the body more likely to develop other immune problems, such as type 1 diabetes.” Dr. Scott adds that the immune system has to find "the perfect balance to defend the body against foreign invaders without hurting itself or over-reacting to the environment and this can be particularly challenging in the gut, where there is an abundance of food and bacteria.”
In side comments that accompany the paper, diabetes expert Dr. Mikael Knip of Finland suggest that the team's results "add to the accumulating concept that the gut is an active player in the diabetes disease process.” Earlier animal models studies by Dr. Scott have shown that a wheat-free diet can reduce the risk of developing diabetes, but he notes that more research is needed to confirm the association and to assess possible effects of diet changes in humans. More research is also needed to examine possible connections to celiac disease, an autoimmune disease associated with adverse immune reactions to wheat proteins that has significant associations with diabetes. This research project was funded by the Juvenile Diabetes Research Foundation and the Canadian Institutes of Health Research.
Source: Diabetes - August 2009
Food - Restaurant Guide – Send me or bring in your GF menus and I’ll add them to this book. www.csatulsa@cox.net
Celiac.com - Celiac Disease & Gluten-free Diet Information Since 1995 - A Victory for Gluten-Free Beer Celiac.com 09/11/2009 - When is a beer not a beer? When it's gluten-free. Until now.
Beer perpetually hovers near the top of most celiac lists of things they'd love to have if they could. Until recently, the regulation of labels for beer, wine and spirits fell to a little known government agency called the Alcohol and Tobacco Tax and Trade Bureau.
Because their regulations relied on the Federal Alcohol Administration Act of 1935, which defined beer as a beverage brewed from malted barley and other grains, gluten-free beers did not meet the strict definition, and could not therefore be labeled as 'gluten-free beer,' as no such standard existed.
That situation has changed, and the Food and Drug Administration is now charged with the regulation of beer labels. Because of this, gluten-free beer can now be labeled 'gluten-free beer' instead of 'sorghum beer' or 'beer made without wheat or barley', or some such silliness.
That's good news for the nation's estimated two million sufferers of celiac disease, and the many, many more that are gluten intolerant. For these folks, consuming any kind of product containing wheat, rye or barley can cause chronic diarrhea, arthritis, bone loss and a raft of other symptoms.
In people with celiac disease, the immune system reacts to gluten, a protein found in wheat, rye and barley, which causes inflammation in their gut and interferes with the absorption of nutrients.
All traditional beers are brewed with malted barley and contain gluten. However, specialty micro brewers began making beer from malted sorghum, an African grain, and sometimes rice. Anheuser-Busch followed later with its own sorghum beer. Beers brewed with sorghum and rice are gluten free, which is great for celiacs, but was not in line with the Federal Alcohol Administration Act of 1935, which defines beer as a beverage brewed from malted barley and other grains.
So even though it looked, smelled and tasted like beer, the amber, foamy and distinctly beer-like beverage did not count as beer under the rules. Which is why last July 7, 2008, the FDA and TTB agreed that FDA would take over regulation.
The FDAs Guidance for Industry covers all non-barley beers. So, in a great development for all of the celiac and gluten-intolerant folks out there, these beers can now officially be labeled gluten-free once they've been tested and confirmed by FDA.
The guidelines give brewers of gluten-free beers until Jan. 1, 2012, to begin adding nutrition labels to their beverages, including a declaration of major food allergens, wheat.
Up until now, people with celiac disease and gluten intolerance could not be sure that their gluten-free beer was actually safe and gluten-free. Now FDA regulations have established a standard.
According to Elaine Monarch, executive director of the Celiac Disease Foundation, accurate labels will provide a measure of assurance for celiacs, and possibly make it easier for European gluten-free beverages to enter the market.
Gluten-free beer is a small, but steadily growing sector of the beer market, with a present market share of under 0.1%, according to Paul Gatza of the Brewers Association in Boulder, Colorado. Still, growth for some brands runs upward of 35% per year. The biggest gluten-free beer players are Anheuser-Busch, which makes Red Bridge, Lakefront Brewery's New Grist, and Bard's Tail.
Easy Cake ( $2.99) is a rich glutenfree "lava cake" that your customer can make with just a fork and a microwave oven. Each package includes the cake mix, a microwave-safe cooking container, and the "lava" (a bar of dark chocolate for the Chocolate Cake or a bar of white "chocolate" confection for the Vanilla Cake).
To prepare, the customer simply adds a little vegetable oil, liquid (milk, water, soy milk, or rice milk), and an egg. Mix with a fork, drop in the candy bar (which melts to become the "lava"), and microwave for 2 to 2.5 minutes. Voila! A scrumptious treat!
Easy Cake is perfect for school, office parties, or as a quick dessert. After baking the cake will be about 4 inches in diameter and 2 inches high (1 to 3 servings depending on portion size). The container is marked for measuring the liquids and includes a lid to make it easy to store leftovers (if there are any). The mix is rice based. The Chocolate flavor is milk/casein free. The Vanilla flavor has milk in the white confection, but the vanilla cake mix itself is milk/casein free. There are two flavors: Chocolate and Vanilla.
Gluten Free Trading Company is pleased introduce Easy Cake, a delicious glutenfree instant microwave cake that is ready to serve in less than 3 minutes!
For additional details please call us at 414-747-8700, ext 211 or log in to your GlutenFree Warehouse Account and visit our Easy Cake Page. http://www.food4celiacs.com/
Plaza District in OKC – Coffy’s Café – soups, salads, sandwich’s and sweets http://www.coffyscafe.org/
Chipotle is surprisingly easy to dine at while on a gluten-free diet. Really the only things that are off limits at Chipotle are the flour tortillas and the tomatillo salsa. All other items are the menu are gluten-free. You can create just about anything you like out of the many remaining ingredients. They have salads or burrito bowls that can be made up of chicken, steak, barbacoa or carnitas for your meat. There are black beans or pinto beans, if you prefer a vegetarian option. They have several different salsas & guacamole to choose from. You can add lettuce to your burrito bowl or just stick with the cheese & sour cream. One of the star ingredients is the cilantro lime rice. The end result is nothing short of spectacular. The best thing about Chipotle is the price. The burrito bowl is priced at $6.35, which is very reasonable for the amount of food you get. A wonderful idea for a quick lunch or dinner on the run. Before ordering, make sure to ask the person making your food to change their gloves so that there is less risk of cross contamination from the flour tortillas. If necessary, ask for the manager on duty to ensure that your needs are understood and met. **Please use caution with the chips & crispy corn taco shells, as they may not be made in a dedicated fryer. Make sure to ask the manager at each location before ordering.
SUMATRA COFFEE SHOP gluten-free sandwiches, paninis, brownies, chocolate chip cookies, and blueberry muffins at at 4244 South Peoria. Yvonne is the owner, and she is darling. You can call her ahead at 742-4849, and she will get your order ready for you. She makes incredible gluten-free bread for $14.95 a loaf that is simply wonderful! You can order loaves of bread the day before, and pick them up the next day. She can slice the bread or leave the loaf whole. She ONLY makes gluten-free bread, so the likelihood of problems is minimized. The BLT and panini are so good
Lonestar now has a gluten free menu. I spoke with one of the manager's there about the gluten free brownie sunday they have at Outback, he told me to email Lonestar and make this a suggestion and that it would create more business for them. Here is the email (lonestarsteakhouse.com)
PF Chang's has a system in place that helps you identify if the dish was prepared separately from other allergens. When you order gluten free meals or an allergy specific free meal, it should be served to you on a plate that has the PF Chang's inscription around the edge. This means that the meal was prepared in a different station using cleaned out woks with gluten-free ingredients. If you do not receive your order on a round plate with this insignia printed on it, double check with the manager.
Copelands (next to Teds Escondido (on 71st and 129TH) they said the kitchen manager will come out and discuss their gluten free offerings and as they are a scratch preparation restaurant they can fix many things gluten free.
The Olive Garden’s Gluten Free menu. Who would have thought that an almost strictly pasta restaurant would have GF offerings? Of course, you can always get their salad sans croutons, but now they have a GF pasta on their Garden Fare options menu. Pennine Rigate with Marinara is a hearty marinara sauce made from tomatoes, bell peppers, onions and herbs served over gluten free penne pasta. Gluten sensitive diners can also try their Steak Toscano (grilled 14 oz. steak served with grilled veggies) or the Herb-Grilled Salmon (salmon filet brushed with herbs and olive oil, served with broccoli and red bell peppers. The Mixed Grill, which comes with broccoli and grilled veggies, can be made with skewers of grilled steak and chicken, marinated in Italian herbs and olive oil, or with all chicken. There is even a children’s GF menu item: Grilled Chicken Breast served with broccoli and grilled veggies. www.olivegarden.com
Udi's breads at Whole Food’s - they make both whole grain and white bread that doesn't have to be kept in the fridge or freezer and that doesn't have to be toasted
GIG's restaurant program - Gluten Free Restaurant Awareness Program (GFRAP)
Have you taken a look at it lately? Website: www.glutenfreerestaurants.org
GFRAP's mission is to make dining out a pleasant experience for gluten-intolerant consumers by working with food service industry professionals to provide gluten-free menu options and employee training programs. GFRAP has been serving both independent restaurants and restaurant chains for over 12 years and currently includes over 1000 participating restaurants. Just in the last three months alone, 17 new restaurants were added to the website!
Participating restaurants receive education and training materials on preparing and serving gluten-free meals to their gluten-free guests. Their menus are approved by GIG’s team of dietitians before being added to our website.
If you are traveling or want to check your hometown's listings, just go to the website and search by restaurant name, city or zip code to find out which restaurants are serving gluten-free meals in your area. The website provides a brief description of the restaurant and a map to show how to get there. This is a valuable resource to people who eat out frequently and are looking for new restaurants to try. Check back every week to see the new restaurants that have been added!
Gluten Free Tasting Event on Tuesday at Boston's in Bentonville ~ August 25th 2009 ~ 3 Beer Samples, And a Small Original or Gluten Free Pizza of Your Choice ~ $12.00 ~ p.s. they have Bards gluten free beer now and your gluten eating family & friends can come too! If Bentonville, Arkansas can do this, we can too!! But it’s up to you!!
Halloween options – List of safe Halloween candy, all of these I would feed to my own family. Trick-or-treating tips: One option is to take "safe" candy to your neighbors ahead of time and ask them to hand this out to your child on Halloween.
Have a bag of assorted "safe" candies and treats at home. After trick or treating, let your child trade the disallowed sweets for items in your homemade goodie bag. (Hint: Have some really special items, like a cupcake, or popcorn ball, or even Halloween stickers), in the bag so your child will feel excited about the trade.) I let my kids do a ‘2-for-1’. They get to trade 1 of the non-safe items for 2 gluten-free items. They are always more than happy to do this. And in a few days all the candy goes away anyway.
Remember that different sizes of the SAME candy can contain different ingredients. So always read ingredient labels!
Wednesday, October 21, 2009
Monday, August 17, 2009
August 2009 Meeting Notes
August 2009
Miscellaneous – a new social network, www.GlutenFreeFaces.com, just launched. The site is free to join and gives you the ability to share recipes, stories, information, search gluten-free blogs, upload photos and videos, ask questions, join discussion groups, get the latest gluten-free news, connect with Celiacs in your area and even chat live with other gluten-free individuals from around the globe. Think of it as a gluten-free Facebook, that is customized to fit your gluten-free needs.
Becoming a member of Gluten-Free Faces is easy. All you have to do is visit www.GlutenFreeFaces.com and click the "Sign Up" link on the home page. Then, enter your email address and fill out a short password and you will instantly gain access to your personalized gluten-free social network! You can then create your profile, where you have the control over how much, or how little information you would like to share, which means that you have control over your privacy settings.
The Fourth Annual Gluten-Free Culinary Summit will be presented at two culinary colleges: The East Edition will be hosted by The Culinary Institute of America in Hyde Park, New York (September 12 and 13, 2009) and the West Edition will be hosted by Johnson & Wales University in Denver, Colorado (October 3 and 4, 2009).
Well-suited for all interest levels and skills. For event schedules, presenters and registration, please visit: www.theglutenfreelifestyle.com. If you have any questions about the Summit Editions, please feel free to call us at 303-368-9990 or email info@prchefs.com.
Food vendor Aramark is opening a gluten-free concession stand at the home of the Colorado Rockies. Aramark says it's believed to be the first such stand in the major leagues. In addition to hot dogs, the new stand's gluten-free offerings include burgers, chicken sandwiches, brownies and beer.
Families visiting Hersheypark will find burgers in gluten-free buns at 13 different locations (spotted on a map) in the park, in addition to GF chicken tenders, pizza, wraps, muffins, brownies and caramel corn.
These new items were added to park menus as a result of requests from guests. The Hersheypark.com Web site lists all the foods available for this and other allergy conditions.
Food workers receive training on the importance of handling gluten-free foods in ways that keep it safe from gluten. Guests can reach park staff through the Web site in advance of a visit with questions about food availability.
Guest Speaker – Teri Whisenhunt from – Mixes from the Heartland http://www.mixesfromtheheartland.net/
Medical – Journal of Clinical Gastroenterology. 2009 Apr 6- To better diagnose celiac disease, assess intestinal damage, and monitor treatment over the long-term, doctors are looking to develop a whole new set of non-invasive evaluation tools.
One of the tools currently of interest are fatty acid binding proteins (FABPs), these are small cytosolic proteins found in enterocytes (tall columnar cells and responsible for the final digestion and absorption of nutrients, electrolytes and water). FABPs are reliable indicators of intestinal mucosal damage, and are potentially useful for non-invasive assessment of intestinal damage in celiac patients.
A team of researchers in the Institute of Nutrition and Toxicology Research at Maastricht University, as well as the departments of Surgery, Pediatrics and Internal Medicine at University Hospital Maastricht, recently set out to assess the potential use of FABPs in non-invasive assessment of intestinal damage in celiac disease.
They began by examining the distribution and microscopic localization of FABPs in healthy human intestinal tissue. They then checked circulating levels of intestinal (I)-FABP and liver (L)-FABP in 26 healthy control subjects, and in 13 patients with biopsy-proven celiac disease, both before and after initiating a gluten-free diet. Ten celiac subjects underwent reevaluation within a year beginning a gluten-free diet.
They found that I-FABP and L-FABP are common in the small intestine, particularly in the jejunum. FABPs also show up in cells on the upper part of the villi, the part that is first to be damaged in celiac disease.
They also found that people with untreated, biopsy-proven celiac disease have substantially higher circulating levels of FABPs as compared with healthy control subjects (I-FABP: 784.7 pg/mL vs. 172.7 pg/mL, P<0.001; L-FABP: 48.4 ng/mL vs. 10.4 ng/mL, P<0.001). These levels return to normal when patients adopt a gluten-free diet.
According to the team, the monitoring of FABP circulating levels shows strong promise as a non-invasive means of diagnosing and assessing intestinal damage in celiac disease, as well as in long-term non-invasive monitoring of treatment and gluten-free diet compliance.
According to a study in the journal Gastroenterology, using frozen blood samples taken from Air Force recruits 50 years ago has found that intolerance of wheat gluten is four times more common today than it was in the 1950s. The findings contradict the prevailing belief that a sharp increase in diagnoses of wheat gluten intolerance has come about because of greater awareness and detection, and raises questions about whether dramatic changes in the American diet have played a role. "It's become much more common," said Dr. Joseph Murray, the Mayo Clinic gastroenterologist who led the study. No one knows why, he said, but one reason might be rapid changes in eating habits and food processing over the last half century. "Fifty years is way too fast for human genetics to have changed," Murray said. "Which tells us it has to be a pervasive environmental influence." Researchers at the Mayo Clinic and the University of Minnesota who conducted the study also found that the recruits who had the undiagnosed digestive disorder, called celiac disease, also had a four-fold increase in the risk of death.
Today an estimated one of 100 people suffer from the inherited disorder, though most of the time people don't know they have it.
Murray said he initiated the study to find out whether the disease is on the rise, and whether it had long-term health consequences if undiagnosed and untreated.
He turned to medical archaeology to find the answers - a treasure-trove of blood samples taken from recruits at the Warren Air Force base in Cheyenne, Wyo., between 1948 and 1954. At the time, strep infections were raging among the recruits, mostly young men on their way to fight in the Korean war. Doctors there drew the samples as part of a study that proved treating the infections with antibiotics would prevent rheumatic fever, a serious heart ailment that can follow strep throat.
Recurrent mouth ulcers suggest celiac disease- SOURCE: BMC Gastroenterology 2009.
- A minority of patients with recurrent mouth sores (aphthous stomatitis) have gluten-sensitive enteropathy, making evaluation for celiac disease appropriate in this population, according to a new study in BMC Gastroenterology.
"It has been reported that in 5 percent of celiac disease patients, aphthous stomatitis may be the sole manifestation of the disease," write Dr. Farhad Shahram, of Tehran University of Medical Sciences, Iran, and colleagues.
The researchers studied 247 aphthous stomatitis patients (average age 33 years) who had at least three aphthous attacks during the year. The team measured antibodies and other immune factors associated with celiac disease, and patients with negative results were excluded.
Those with positive results underwent biopsies of the lining of the small intestine. Gluten-sensitive enteropathy was defined as a positive blood test for immune factors and abnormal biopsy results. A gluten-free diet was recommended for patients with gluten-sensitive enteropathy.
Of the 247 patients, seven patients with positive blood tests underwent upper GI endoscopy and duodenal biopsies. Endoscopic findings were compatible with gluten-sensitive enteropathy in two patients and were normal in five patients. However, biopsy findings were compatible with gluten-sensitive enteropathy in all seven patients.
The patients with gluten-sensitive enteropathy were an average of 27 years old and the average duration of the disease was 4.5 years. The seven celiac disease patients had not responded to conventional mouth ulcer medications, including topical corticosteroids, tetracycline, and colchicine.
Of the seven celiac disease patients, four started a strict gluten-free diet. All showed a significant improvement within 2 to 6 months.
"Gluten-sensitive enteropathy should be considered in aphthous stomatitis patients," the authors conclude. A lack of response to conventional treatment for could be another indicator of celiac disease risk.
Gluten Tied to Schizophrenia-Celiac.com 04/29/2009 - A team of researchers based at UK's prospective University of Highlands and Islands (UHI) have found a link between gluten and schizophrenia. According to their latest findings, proteins found in the gluten of wheat, rye and barley might play a role in triggering schizophrenia in people with a genetic risk for the condition, or in worsening symptoms in people who have the disease.
The research team has been looking into the role played by gluten in schizophrenia and diabetes, as well as hunting for connections between the two disorders. Their research showed that the bodies of certain schizophrenia sufferers could not properly processes gluten, which led to tissue damage.
As a result of these and other findings, researchers now consider genetic risk factors, together with environmental triggers, to be central to development of both schizophrenia and diabetes. Gluten is one such example.
According to senior researcher and reader in genetics, Dr. Jun Wei, more than one-third of all people with schizophrenia show "high levels of antibodies against wheat gluten," and may experience some improvement in symptoms with a gluten-free diet.
Though the studies are still in their early stages, the hypothesis is encouraging, because, as noted by head of UHI department of diabetes and cardiovascular science, Prof Ian Megson, if it is correct, "a simple change in diet might prevent these diseases...in some individuals."
The research is part of two comprehensive studies at UHI into the connections between schizophrenia and diabetes, and the role played by gluten, and is supported by a £300,000 grant from the Schizophrenia Association of Great Britain (SAGB).
It would be interesting to see more research done on the connection between celiac disease and schizophrenia, as other studies have indicated that there is a link.
Source: BBC News
Hippocampal Sclerosis in Temporal Lobe Epilepsy Linked With Gluten Sensitivity- J Neurol Neurosurg Psychiatry 2009;80:626-630 - A paper in the June issue of the Journal of Neurology, Neurosurgery, and Psychiatry suggests an association between gluten sensitivity and temporal lobe epilepsy (TLE) with hippocampal sclerosis (HS).
Celiac disease and gluten sensitivity are known to be associated with cerebellar degeneration and epilepsy with occipital calcifications, Dr. Jukka Peltola, of Tampere University Hospital, Finland, and colleagues explain. They add that autoimmunity has been implicated as a possible mechanism leading to HS.
In the current study, the researchers examined celiac-associated antibodies and gluten sensitivity in 48 consecutive patients with refractory focal epilepsy. The patients were categorized into three groups based on ictal electro-clinical characteristics and magnetic resonance imaging findings: TLE with HS (n = 16), TLE without HS (n = 16), and extratemporal epilepsy (n = 16).
Seven patients were gluten sensitive. All seven were in the TLE with HS group (p<0.0002). On duodenal biopsy, three of the seven patients with gluten sensitivity had histological evidence of celiac disease. The other four had inflammatory changes consistent with early celiac diagnosis but normal small bowel villous morphology.
"Our data suggest that celiac disease-related antibodies may be associated with the development of HS in patients suffering from temporal epilepsy," Dr. Peltola said in an interview with Reuters Health. "Therapeutically, our findings open the possibility for prevention of HS by adhering to a gluten free diet," he explained. "TLE with HS is a progressive disorder leading to cognitive decline and worsening of seizures, therefore the relevance of these findings to the clinical practice is significant if confirmed in other studies."
"The present study adds further evidence for an association of immunological aberrations and human epilepsy," Dr. Peltola added. "Increased plasma levels of various autoantibodies have been identified in patients both with newly diagnosed and chronic epilepsy...Immunological mechanisms may be related to refractoriness and even progression of certain types of epilepsy."
Celiac Disease Linked to Irritable Bowel Syndrome - In patients meeting diagnostic criteria for irritable bowel syndrome (IBS), the prevalence of biopsy-proved celiac disease was more than quadruple that in control individuals without IBS, according to the results of a systematic review and meta-analysis reported in the April 13 issue of the Archives of Internal Medicine. "Prevalence of biopsy-proved celiac disease in cases meeting diagnostic criteria for IBS was more than 4-fold that in controls without IBS," the study authors write. "If screening is to be undertaken, then EMA or tTGA testing should be preferred to IgA class AGA testing because of a higher positive predictive value, although the yield will depend on the prevalence in the population being studied."
The American College of Gastroenterology supported this study. The authors have disclosed no relevant financial relationships.
ADHD Caused by Digestive Disorder? - Celiac.com 05/08/2009 - In 1996-1997, researchers began a long-term study of 23 children aged 4 to 11. All of the children suffered from hyperactive disorders including ADHD. All children showed abnormal levels of peptides in their urine.
Researchers believed that metabolic disorders impair the effective breakdown of certain proteins in children and thereby cause mental problem, such as hyperactive disorders. Related international research has established links between protein disorder and the conditions of Autism and schizophrenia. A growing number of studies also hint that some cases of ADHD are tied to digestive disorders. Data from this Norwegian study supports the idea that ADHD may also arise from a digestive disorder.
This study indicates that consumption of certain foods, such as milk and gluten, may contribute to ADHD in children who lack the enzyme that breaks down proteins like casein, a component of milk--which also helps in the formation of cheese.
Interestingly, when children who lack this enzyme eat foods that require the enzyme to properly digest proteins like casein, their brains experience an opium-like effect, which might explain at least some of the spaciness and impaired attention these kids exhibit.
According to Reichalt's theory, hyperactivity can be controlled by reducing the intake of foods that require the presence of this missing enzyme to properly break down the offending proteins.
In the study, 22 of the 23 children were placed on strict milk-free and gluten-free diets. All exhibited a rapid improvement in general well-being, including improved mental health and general behavior, improved attention-span and better learning abilities. After a year, 22 of the 23 families reported clear improvements in their child's behavior and attention-span.
When the kids were taken off their diets, their symptoms returned nearly immediately. Before changing their diets, most of the children were taking medications, like Ritalin, to treat their symptoms. After their diets were established, their medications were discontinued.
By 2004, a number of the children had ceased their diets for various reasons and some have returned to medication. Still, six children remained milk-free and several had also cut out gluten, which is found in wheat, rye, barley and to some extent oats.
Swine Flu Drugs: Roche Says Tamiflu Gluten-free - The Centers for Disease Control and Prevention (CDC) website has a page dedicated to antiviral medicines and swine influenza. That website contains the following information: To treat H1N1/swine flu, or prevent the flu in people one year of age or older who have been exposed to the virus, the CDC recommends oseltamivir (Tamiflu®). When contacted, Roche representatives stated that all Roche products, including Tamiflu, are gluten-free.
To treat H1N1/swine flu infection in people 7 years of age and older, or to prevent infection in people 5 years and older, the CDC recommends zanamivir (Relenza®). When contacted, GSK representatives stated that gluten is not one of the active or inactive ingredients in Relenza, but that GSK cannot guarantee that the product is free from potential cross-contamination.
Please be aware that this information applies only to products available in the U.S. For drugs obtained internationally, contact the manufacturers directly.
"Non-Celiacs" Benefit from Gluten-free Diet - Gastroenterology 2009;136:816–823 - A team of Finnish researchers is calling for a change in the criteria for diagnosing celiac disease, based on their findings that gluten intolerant patients who do not have clinical celiac disease get similar benefits from a gluten-free diet, and respond to the diet about as well as patients who do have clinical celiac disease.
The research team recently set out to test their hypothesis that patients who showed only mild enteropathy, but positive endomysial anti-bodies, would benefit from a gluten-free diet in a manner similar to patients with more serious mucosal damage.
Among their findings are that patients with endomysial antibodies benefit from a gluten-free diet REGARDLESS of the level of intestinal tissue damage. That means that folks who have no symptoms whatsoever, but who have blood antibodies that are reacting to offending gluten proteins, should consider the benefits of a gluten-free diet. Moreover, it's likely that damage will eventually occur over time without a gluten-free diet.
The current diagnostic criteria for celiac disease require the presence of small-bowel mucosal villous atrophy with crypt hyperplasia (Marsh III). So, no damage of this specific kind, no celiac disease, no gluten-free diet, no worries. Such has been the common medical practice up to the present.
However, in many cases, damage to the intestine develops slowly over time. Also, most patients show some kind of clinical symptoms long before histologic changes show up. Endomysial antibodies happen to be strong and specific predictors of pending damage in the form of villous atrophy.
To test their hypothesis, the research team performed small-bowel endoscopies, along with clinical evaluations, on 70 adults with positive endomysial antibodies. Of these, 23 showed only mild enteropathy (Marsh I–II). Researchers assigned members of this group to either gluten-free or gluten-inclusive diets at random.
After 1 year, the team repeated all clinical, serologic, and histologic tests. A total of 47 participants showed small-bowel mucosal lesions consistent with celiac disease (Marsh III), and this group served as a control for the study.
The results for the group that continued to consume gluten showed damage to the mucosal villous architecture in all cases, along with persistent symptoms and abnormal antibody levels.
In contrast, the gluten-free group showed less damage, generally Marsh I–II, a retreat of symptoms, reduced antibody levels along with reductions in mucosal inflammation similar to controls (Marsh III).
The team concluded that a gluten-free diet provides similar benefits for gluten intolerant patients without clinical celiac disease as for those with celiac disease, that the diagnostic criteria for celiac disease warrant re-evaluation, that the presence of endomysial antibodies without mucosal damage should be included in chain of genetic gluten intolerance, and finally that such cases merit treatment with gluten-free diet.
As a reminder: the Celiac Research study spoken about at our last meeting needs several more volunteers! They can arrange with the research sponsor to pay for transportation costs (gas) and can possibly work with individuals if they have special circumstances in getting to their clinic. Their center is the #1 research site in the US on this study now.
Steven Newlon
Director of Marketing & Patient Recruitment
COR Clinical Research
P: 405-272-8481
F: 405-272-3041
www.corclinical.com
SCIENTISTS IN AUSTRALIA TEST VACCINE - Australian scientists announced that they have developed a vaccine which could mean patients could eat all kinds of foods without any side effects. A couple of years ago, researchers at Melbourne's Walter and Eliza Hall Institute discovered which part of gluten was causing the toxic reaction in celiac patients. Now they have turned that into a vaccine treatment. Dr Jason Tye-Din, a gastroenterologist in Australia is quoted as saying the treatment would put an end to the need for a gluten-free diet. "The aim of the vaccine is to switch off the abnormal response to gluten seen in celiac disease," he said.
The vaccine is designed to de-sensitize the patient so their bodies can cope with gluten. Dr Tye-Din says it is hoped the treatment will restore the ability of the small intestine to absorb nutrients in the normal way. "Having a vaccine that would allow people to return to a normal gluten-containing diet will be a world first, a significant breakthrough and will significantly enhance the life of patients with celiac disease," he said. Researchers will initially do a small trial on 40 patients with celiac disease, which will tell them whether it is safe and if there are any side effects.
AT-1001 update - A gluten-free diet is the only accepted treatment, right now. But, what if you could take a pill before a meal to block gluten, and eat anything you want? That’s the idea behind a new experimental drug AT-1001. Dr. Alessio Fasano, M.D., one of the researchers behind the drug says “The ultimate goal is to go back to a regular life. To eat whatever you want, whenever you want.”
The drug inhibits zonulin, a protein that regulates the absorption of nutrients. Its job is to open and close spaces between tightly-packed cells that line the small intestine, letting vital nutrients in, and keeping destructive proteins, like gluten, out. Too much zonulin…and the space gets jammed open.
Another researcher heading the study says, so far, the pill seems to keep those spaces between cells closed so gluten can’t get in.
It doesn’t mean the end of a gluten-free diet, but it could allow for an occasional splurge.
Two recent activities should help raise CD awareness. First, a milestone in CD information has been initiated by the CDC to provide a better estimate of the number of people w/ CD in the US. The annual health statistics survey will now include questions about CD including tTg and EMA testing. Second, the American College of Gastroenterology now “highly recommends” testing for CD before making a diagnosis for IBS.
Food/Restaurants –Starbucks is discontinuing its Valencia orange cake. Triumph dining has put together a petition to let Starbucks know how much we miss the gluten-free cake and to let them know we’d love to see it back in our local Starbucks! Please share this petition with your support group members and ask them to sign it. The petition is located here: http://www.triumphdining.com/blog/petition -to-starbucks-bring-back-the-gluten-free-cake/. They are now going to sale KIND Fruit and Nut Bars in their place.
GoPicnic - http://www.gopicnic.com/Gluten-Free-Meals - on the go meals, some kind of like lunchables. Average pricd $5.99 + shipping.
www.celinalfoods.com They have single serving packets that can be made in the microwave in less than a minute. Including slices of bread, vanilla cake, corn bread and more.
Old School Bagels decided they couldn't do GF bagels because the risk of cross contamination is too great. They now have no plans to make gluten free bagels, and has asked to pass this along.
Pete's Place in Krebs (outside McAlester) is an Italian place. It has grilled chicken, pork loin or steak, salad AND they had GF pasta!!
The Celiac Chicks have begun creating a Gluten-Free Map of the World (http://www.celiacchicks.com/2009/04/glutenfree-world-map.html). We can all help by adding GF places we know of or have visited. This map could be great help to celiacs looking for places to eat or buy food while on vacation, business trips, etc.
Mazzio’s –
TPS - does have a limited GF menu, but there is a required process needed to receive it. Please contact Tulsa Public Schools Child Nutrition Services for more information.
Angel Food – Allergen-Free Food Box has gone up to $40.00 dollars go to www.angelfoodministries.com to order. I am told it is very good GF food.
NFCA is working to make Philadelphia a model for gluten-free dining by working to make all its restaurants friendly to gluten-free diners.
To that end, NFCA offers a Gluten-Free Resource Education Awareness Training (GREAT) program, free of charge. During the course, restaurant workers are taught what ingredients contain gluten, and what substitutes can be used instead. They learn that even a hint of flour in the air can be dangerous to some people, and that reusing utensils or pans that once touched gluten is a no-no.
Restaurants that complete the training can put a GREAT sticker on their door, signaling to diners that the chef has been properly trained in gluten-free protocol. The hopes are that one day the GREAT sticker will be as common as Zagat or "Best of Philadelphia."
NFCA is now working with the 76ers and the Phillies to help them add gluten-free foods to their stadium fare. She looks forward to the day when a child suffering from celiac disease can go to the ballpark and enjoy a traditional hot dog in a bun just like anybody else.
Watch for new or newly remodeled Wal-Marts to have a new Gluten Free 12 foot aisle. And don't forget the Great Value Brand will label Gluten Free if it truly is.
Red Robin – you can get a lettuce wrap burger (tell them to hold the seasoning) and it was delicious! It comes with a side salad.
Toby Keith's in the Hard Rock casino (used to be the Cherokee Casino out on I44). The fries are cooked separately from all battered foods, so the cheesy fries were safe. Also the baked potato wedges. Both were yummy! I think they are both appetizers, but the fries may be a side dish option.
They had lots of burgers and sandwiches that we could have gotten without the bun. The burger without the bun was delicious! It was the only burger or sandwich we tried, but they had some kind of bologna and turkey that day. They must use good quality meat, because the burger wasn't dry or tough. I skipped that stuff and went straight for the steak with fries. The steak is melt-in-your-mouth fabulous! Of course there was salad, too. And ice cream for dessert.
Minute Rice’s microwave single-serve bowls. They are noted as gluten free on the package and I just love the chicken-flavored one.
More GF cereals from General Mills: Rice Chex, Corn Chex, Cinnamon Chex, Chocolate Chex, Strawberry Chex, Honey Nut Chex, Trix, Kix (check ingredients…old boxes have oats), Honey Kix, Berry Berry Kix, Sprinkles Cookie Crisp, Chocolate Lucky Charms, Dora the Explorer
Miscellaneous – a new social network, www.GlutenFreeFaces.com, just launched. The site is free to join and gives you the ability to share recipes, stories, information, search gluten-free blogs, upload photos and videos, ask questions, join discussion groups, get the latest gluten-free news, connect with Celiacs in your area and even chat live with other gluten-free individuals from around the globe. Think of it as a gluten-free Facebook, that is customized to fit your gluten-free needs.
Becoming a member of Gluten-Free Faces is easy. All you have to do is visit www.GlutenFreeFaces.com and click the "Sign Up" link on the home page. Then, enter your email address and fill out a short password and you will instantly gain access to your personalized gluten-free social network! You can then create your profile, where you have the control over how much, or how little information you would like to share, which means that you have control over your privacy settings.
The Fourth Annual Gluten-Free Culinary Summit will be presented at two culinary colleges: The East Edition will be hosted by The Culinary Institute of America in Hyde Park, New York (September 12 and 13, 2009) and the West Edition will be hosted by Johnson & Wales University in Denver, Colorado (October 3 and 4, 2009).
Well-suited for all interest levels and skills. For event schedules, presenters and registration, please visit: www.theglutenfreelifestyle.com. If you have any questions about the Summit Editions, please feel free to call us at 303-368-9990 or email info@prchefs.com.
Food vendor Aramark is opening a gluten-free concession stand at the home of the Colorado Rockies. Aramark says it's believed to be the first such stand in the major leagues. In addition to hot dogs, the new stand's gluten-free offerings include burgers, chicken sandwiches, brownies and beer.
Families visiting Hersheypark will find burgers in gluten-free buns at 13 different locations (spotted on a map) in the park, in addition to GF chicken tenders, pizza, wraps, muffins, brownies and caramel corn.
These new items were added to park menus as a result of requests from guests. The Hersheypark.com Web site lists all the foods available for this and other allergy conditions.
Food workers receive training on the importance of handling gluten-free foods in ways that keep it safe from gluten. Guests can reach park staff through the Web site in advance of a visit with questions about food availability.
Guest Speaker – Teri Whisenhunt from – Mixes from the Heartland http://www.mixesfromtheheartland.net/
Medical – Journal of Clinical Gastroenterology. 2009 Apr 6- To better diagnose celiac disease, assess intestinal damage, and monitor treatment over the long-term, doctors are looking to develop a whole new set of non-invasive evaluation tools.
One of the tools currently of interest are fatty acid binding proteins (FABPs), these are small cytosolic proteins found in enterocytes (tall columnar cells and responsible for the final digestion and absorption of nutrients, electrolytes and water). FABPs are reliable indicators of intestinal mucosal damage, and are potentially useful for non-invasive assessment of intestinal damage in celiac patients.
A team of researchers in the Institute of Nutrition and Toxicology Research at Maastricht University, as well as the departments of Surgery, Pediatrics and Internal Medicine at University Hospital Maastricht, recently set out to assess the potential use of FABPs in non-invasive assessment of intestinal damage in celiac disease.
They began by examining the distribution and microscopic localization of FABPs in healthy human intestinal tissue. They then checked circulating levels of intestinal (I)-FABP and liver (L)-FABP in 26 healthy control subjects, and in 13 patients with biopsy-proven celiac disease, both before and after initiating a gluten-free diet. Ten celiac subjects underwent reevaluation within a year beginning a gluten-free diet.
They found that I-FABP and L-FABP are common in the small intestine, particularly in the jejunum. FABPs also show up in cells on the upper part of the villi, the part that is first to be damaged in celiac disease.
They also found that people with untreated, biopsy-proven celiac disease have substantially higher circulating levels of FABPs as compared with healthy control subjects (I-FABP: 784.7 pg/mL vs. 172.7 pg/mL, P<0.001; L-FABP: 48.4 ng/mL vs. 10.4 ng/mL, P<0.001). These levels return to normal when patients adopt a gluten-free diet.
According to the team, the monitoring of FABP circulating levels shows strong promise as a non-invasive means of diagnosing and assessing intestinal damage in celiac disease, as well as in long-term non-invasive monitoring of treatment and gluten-free diet compliance.
According to a study in the journal Gastroenterology, using frozen blood samples taken from Air Force recruits 50 years ago has found that intolerance of wheat gluten is four times more common today than it was in the 1950s. The findings contradict the prevailing belief that a sharp increase in diagnoses of wheat gluten intolerance has come about because of greater awareness and detection, and raises questions about whether dramatic changes in the American diet have played a role. "It's become much more common," said Dr. Joseph Murray, the Mayo Clinic gastroenterologist who led the study. No one knows why, he said, but one reason might be rapid changes in eating habits and food processing over the last half century. "Fifty years is way too fast for human genetics to have changed," Murray said. "Which tells us it has to be a pervasive environmental influence." Researchers at the Mayo Clinic and the University of Minnesota who conducted the study also found that the recruits who had the undiagnosed digestive disorder, called celiac disease, also had a four-fold increase in the risk of death.
Today an estimated one of 100 people suffer from the inherited disorder, though most of the time people don't know they have it.
Murray said he initiated the study to find out whether the disease is on the rise, and whether it had long-term health consequences if undiagnosed and untreated.
He turned to medical archaeology to find the answers - a treasure-trove of blood samples taken from recruits at the Warren Air Force base in Cheyenne, Wyo., between 1948 and 1954. At the time, strep infections were raging among the recruits, mostly young men on their way to fight in the Korean war. Doctors there drew the samples as part of a study that proved treating the infections with antibiotics would prevent rheumatic fever, a serious heart ailment that can follow strep throat.
Recurrent mouth ulcers suggest celiac disease- SOURCE: BMC Gastroenterology 2009.
- A minority of patients with recurrent mouth sores (aphthous stomatitis) have gluten-sensitive enteropathy, making evaluation for celiac disease appropriate in this population, according to a new study in BMC Gastroenterology.
"It has been reported that in 5 percent of celiac disease patients, aphthous stomatitis may be the sole manifestation of the disease," write Dr. Farhad Shahram, of Tehran University of Medical Sciences, Iran, and colleagues.
The researchers studied 247 aphthous stomatitis patients (average age 33 years) who had at least three aphthous attacks during the year. The team measured antibodies and other immune factors associated with celiac disease, and patients with negative results were excluded.
Those with positive results underwent biopsies of the lining of the small intestine. Gluten-sensitive enteropathy was defined as a positive blood test for immune factors and abnormal biopsy results. A gluten-free diet was recommended for patients with gluten-sensitive enteropathy.
Of the 247 patients, seven patients with positive blood tests underwent upper GI endoscopy and duodenal biopsies. Endoscopic findings were compatible with gluten-sensitive enteropathy in two patients and were normal in five patients. However, biopsy findings were compatible with gluten-sensitive enteropathy in all seven patients.
The patients with gluten-sensitive enteropathy were an average of 27 years old and the average duration of the disease was 4.5 years. The seven celiac disease patients had not responded to conventional mouth ulcer medications, including topical corticosteroids, tetracycline, and colchicine.
Of the seven celiac disease patients, four started a strict gluten-free diet. All showed a significant improvement within 2 to 6 months.
"Gluten-sensitive enteropathy should be considered in aphthous stomatitis patients," the authors conclude. A lack of response to conventional treatment for could be another indicator of celiac disease risk.
Gluten Tied to Schizophrenia-Celiac.com 04/29/2009 - A team of researchers based at UK's prospective University of Highlands and Islands (UHI) have found a link between gluten and schizophrenia. According to their latest findings, proteins found in the gluten of wheat, rye and barley might play a role in triggering schizophrenia in people with a genetic risk for the condition, or in worsening symptoms in people who have the disease.
The research team has been looking into the role played by gluten in schizophrenia and diabetes, as well as hunting for connections between the two disorders. Their research showed that the bodies of certain schizophrenia sufferers could not properly processes gluten, which led to tissue damage.
As a result of these and other findings, researchers now consider genetic risk factors, together with environmental triggers, to be central to development of both schizophrenia and diabetes. Gluten is one such example.
According to senior researcher and reader in genetics, Dr. Jun Wei, more than one-third of all people with schizophrenia show "high levels of antibodies against wheat gluten," and may experience some improvement in symptoms with a gluten-free diet.
Though the studies are still in their early stages, the hypothesis is encouraging, because, as noted by head of UHI department of diabetes and cardiovascular science, Prof Ian Megson, if it is correct, "a simple change in diet might prevent these diseases...in some individuals."
The research is part of two comprehensive studies at UHI into the connections between schizophrenia and diabetes, and the role played by gluten, and is supported by a £300,000 grant from the Schizophrenia Association of Great Britain (SAGB).
It would be interesting to see more research done on the connection between celiac disease and schizophrenia, as other studies have indicated that there is a link.
Source: BBC News
Hippocampal Sclerosis in Temporal Lobe Epilepsy Linked With Gluten Sensitivity- J Neurol Neurosurg Psychiatry 2009;80:626-630 - A paper in the June issue of the Journal of Neurology, Neurosurgery, and Psychiatry suggests an association between gluten sensitivity and temporal lobe epilepsy (TLE) with hippocampal sclerosis (HS).
Celiac disease and gluten sensitivity are known to be associated with cerebellar degeneration and epilepsy with occipital calcifications, Dr. Jukka Peltola, of Tampere University Hospital, Finland, and colleagues explain. They add that autoimmunity has been implicated as a possible mechanism leading to HS.
In the current study, the researchers examined celiac-associated antibodies and gluten sensitivity in 48 consecutive patients with refractory focal epilepsy. The patients were categorized into three groups based on ictal electro-clinical characteristics and magnetic resonance imaging findings: TLE with HS (n = 16), TLE without HS (n = 16), and extratemporal epilepsy (n = 16).
Seven patients were gluten sensitive. All seven were in the TLE with HS group (p<0.0002). On duodenal biopsy, three of the seven patients with gluten sensitivity had histological evidence of celiac disease. The other four had inflammatory changes consistent with early celiac diagnosis but normal small bowel villous morphology.
"Our data suggest that celiac disease-related antibodies may be associated with the development of HS in patients suffering from temporal epilepsy," Dr. Peltola said in an interview with Reuters Health. "Therapeutically, our findings open the possibility for prevention of HS by adhering to a gluten free diet," he explained. "TLE with HS is a progressive disorder leading to cognitive decline and worsening of seizures, therefore the relevance of these findings to the clinical practice is significant if confirmed in other studies."
"The present study adds further evidence for an association of immunological aberrations and human epilepsy," Dr. Peltola added. "Increased plasma levels of various autoantibodies have been identified in patients both with newly diagnosed and chronic epilepsy...Immunological mechanisms may be related to refractoriness and even progression of certain types of epilepsy."
Celiac Disease Linked to Irritable Bowel Syndrome - In patients meeting diagnostic criteria for irritable bowel syndrome (IBS), the prevalence of biopsy-proved celiac disease was more than quadruple that in control individuals without IBS, according to the results of a systematic review and meta-analysis reported in the April 13 issue of the Archives of Internal Medicine. "Prevalence of biopsy-proved celiac disease in cases meeting diagnostic criteria for IBS was more than 4-fold that in controls without IBS," the study authors write. "If screening is to be undertaken, then EMA or tTGA testing should be preferred to IgA class AGA testing because of a higher positive predictive value, although the yield will depend on the prevalence in the population being studied."
The American College of Gastroenterology supported this study. The authors have disclosed no relevant financial relationships.
ADHD Caused by Digestive Disorder? - Celiac.com 05/08/2009 - In 1996-1997, researchers began a long-term study of 23 children aged 4 to 11. All of the children suffered from hyperactive disorders including ADHD. All children showed abnormal levels of peptides in their urine.
Researchers believed that metabolic disorders impair the effective breakdown of certain proteins in children and thereby cause mental problem, such as hyperactive disorders. Related international research has established links between protein disorder and the conditions of Autism and schizophrenia. A growing number of studies also hint that some cases of ADHD are tied to digestive disorders. Data from this Norwegian study supports the idea that ADHD may also arise from a digestive disorder.
This study indicates that consumption of certain foods, such as milk and gluten, may contribute to ADHD in children who lack the enzyme that breaks down proteins like casein, a component of milk--which also helps in the formation of cheese.
Interestingly, when children who lack this enzyme eat foods that require the enzyme to properly digest proteins like casein, their brains experience an opium-like effect, which might explain at least some of the spaciness and impaired attention these kids exhibit.
According to Reichalt's theory, hyperactivity can be controlled by reducing the intake of foods that require the presence of this missing enzyme to properly break down the offending proteins.
In the study, 22 of the 23 children were placed on strict milk-free and gluten-free diets. All exhibited a rapid improvement in general well-being, including improved mental health and general behavior, improved attention-span and better learning abilities. After a year, 22 of the 23 families reported clear improvements in their child's behavior and attention-span.
When the kids were taken off their diets, their symptoms returned nearly immediately. Before changing their diets, most of the children were taking medications, like Ritalin, to treat their symptoms. After their diets were established, their medications were discontinued.
By 2004, a number of the children had ceased their diets for various reasons and some have returned to medication. Still, six children remained milk-free and several had also cut out gluten, which is found in wheat, rye, barley and to some extent oats.
Swine Flu Drugs: Roche Says Tamiflu Gluten-free - The Centers for Disease Control and Prevention (CDC) website has a page dedicated to antiviral medicines and swine influenza. That website contains the following information: To treat H1N1/swine flu, or prevent the flu in people one year of age or older who have been exposed to the virus, the CDC recommends oseltamivir (Tamiflu®). When contacted, Roche representatives stated that all Roche products, including Tamiflu, are gluten-free.
To treat H1N1/swine flu infection in people 7 years of age and older, or to prevent infection in people 5 years and older, the CDC recommends zanamivir (Relenza®). When contacted, GSK representatives stated that gluten is not one of the active or inactive ingredients in Relenza, but that GSK cannot guarantee that the product is free from potential cross-contamination.
Please be aware that this information applies only to products available in the U.S. For drugs obtained internationally, contact the manufacturers directly.
"Non-Celiacs" Benefit from Gluten-free Diet - Gastroenterology 2009;136:816–823 - A team of Finnish researchers is calling for a change in the criteria for diagnosing celiac disease, based on their findings that gluten intolerant patients who do not have clinical celiac disease get similar benefits from a gluten-free diet, and respond to the diet about as well as patients who do have clinical celiac disease.
The research team recently set out to test their hypothesis that patients who showed only mild enteropathy, but positive endomysial anti-bodies, would benefit from a gluten-free diet in a manner similar to patients with more serious mucosal damage.
Among their findings are that patients with endomysial antibodies benefit from a gluten-free diet REGARDLESS of the level of intestinal tissue damage. That means that folks who have no symptoms whatsoever, but who have blood antibodies that are reacting to offending gluten proteins, should consider the benefits of a gluten-free diet. Moreover, it's likely that damage will eventually occur over time without a gluten-free diet.
The current diagnostic criteria for celiac disease require the presence of small-bowel mucosal villous atrophy with crypt hyperplasia (Marsh III). So, no damage of this specific kind, no celiac disease, no gluten-free diet, no worries. Such has been the common medical practice up to the present.
However, in many cases, damage to the intestine develops slowly over time. Also, most patients show some kind of clinical symptoms long before histologic changes show up. Endomysial antibodies happen to be strong and specific predictors of pending damage in the form of villous atrophy.
To test their hypothesis, the research team performed small-bowel endoscopies, along with clinical evaluations, on 70 adults with positive endomysial antibodies. Of these, 23 showed only mild enteropathy (Marsh I–II). Researchers assigned members of this group to either gluten-free or gluten-inclusive diets at random.
After 1 year, the team repeated all clinical, serologic, and histologic tests. A total of 47 participants showed small-bowel mucosal lesions consistent with celiac disease (Marsh III), and this group served as a control for the study.
The results for the group that continued to consume gluten showed damage to the mucosal villous architecture in all cases, along with persistent symptoms and abnormal antibody levels.
In contrast, the gluten-free group showed less damage, generally Marsh I–II, a retreat of symptoms, reduced antibody levels along with reductions in mucosal inflammation similar to controls (Marsh III).
The team concluded that a gluten-free diet provides similar benefits for gluten intolerant patients without clinical celiac disease as for those with celiac disease, that the diagnostic criteria for celiac disease warrant re-evaluation, that the presence of endomysial antibodies without mucosal damage should be included in chain of genetic gluten intolerance, and finally that such cases merit treatment with gluten-free diet.
As a reminder: the Celiac Research study spoken about at our last meeting needs several more volunteers! They can arrange with the research sponsor to pay for transportation costs (gas) and can possibly work with individuals if they have special circumstances in getting to their clinic. Their center is the #1 research site in the US on this study now.
Steven Newlon
Director of Marketing & Patient Recruitment
COR Clinical Research
P: 405-272-8481
F: 405-272-3041
www.corclinical.com
SCIENTISTS IN AUSTRALIA TEST VACCINE - Australian scientists announced that they have developed a vaccine which could mean patients could eat all kinds of foods without any side effects. A couple of years ago, researchers at Melbourne's Walter and Eliza Hall Institute discovered which part of gluten was causing the toxic reaction in celiac patients. Now they have turned that into a vaccine treatment. Dr Jason Tye-Din, a gastroenterologist in Australia is quoted as saying the treatment would put an end to the need for a gluten-free diet. "The aim of the vaccine is to switch off the abnormal response to gluten seen in celiac disease," he said.
The vaccine is designed to de-sensitize the patient so their bodies can cope with gluten. Dr Tye-Din says it is hoped the treatment will restore the ability of the small intestine to absorb nutrients in the normal way. "Having a vaccine that would allow people to return to a normal gluten-containing diet will be a world first, a significant breakthrough and will significantly enhance the life of patients with celiac disease," he said. Researchers will initially do a small trial on 40 patients with celiac disease, which will tell them whether it is safe and if there are any side effects.
AT-1001 update - A gluten-free diet is the only accepted treatment, right now. But, what if you could take a pill before a meal to block gluten, and eat anything you want? That’s the idea behind a new experimental drug AT-1001. Dr. Alessio Fasano, M.D., one of the researchers behind the drug says “The ultimate goal is to go back to a regular life. To eat whatever you want, whenever you want.”
The drug inhibits zonulin, a protein that regulates the absorption of nutrients. Its job is to open and close spaces between tightly-packed cells that line the small intestine, letting vital nutrients in, and keeping destructive proteins, like gluten, out. Too much zonulin…and the space gets jammed open.
Another researcher heading the study says, so far, the pill seems to keep those spaces between cells closed so gluten can’t get in.
It doesn’t mean the end of a gluten-free diet, but it could allow for an occasional splurge.
Two recent activities should help raise CD awareness. First, a milestone in CD information has been initiated by the CDC to provide a better estimate of the number of people w/ CD in the US. The annual health statistics survey will now include questions about CD including tTg and EMA testing. Second, the American College of Gastroenterology now “highly recommends” testing for CD before making a diagnosis for IBS.
Food/Restaurants –Starbucks is discontinuing its Valencia orange cake. Triumph dining has put together a petition to let Starbucks know how much we miss the gluten-free cake and to let them know we’d love to see it back in our local Starbucks! Please share this petition with your support group members and ask them to sign it. The petition is located here: http://www.triumphdining.com/blog/petition -to-starbucks-bring-back-the-gluten-free-cake/. They are now going to sale KIND Fruit and Nut Bars in their place.
GoPicnic - http://www.gopicnic.com/Gluten-Free-Meals - on the go meals, some kind of like lunchables. Average pricd $5.99 + shipping.
www.celinalfoods.com They have single serving packets that can be made in the microwave in less than a minute. Including slices of bread, vanilla cake, corn bread and more.
Old School Bagels decided they couldn't do GF bagels because the risk of cross contamination is too great. They now have no plans to make gluten free bagels, and has asked to pass this along.
Pete's Place in Krebs (outside McAlester) is an Italian place. It has grilled chicken, pork loin or steak, salad AND they had GF pasta!!
The Celiac Chicks have begun creating a Gluten-Free Map of the World (http://www.celiacchicks.com/2009/04/glutenfree-world-map.html). We can all help by adding GF places we know of or have visited. This map could be great help to celiacs looking for places to eat or buy food while on vacation, business trips, etc.
Mazzio’s –
TPS - does have a limited GF menu, but there is a required process needed to receive it. Please contact Tulsa Public Schools Child Nutrition Services for more information.
Angel Food – Allergen-Free Food Box has gone up to $40.00 dollars go to www.angelfoodministries.com to order. I am told it is very good GF food.
NFCA is working to make Philadelphia a model for gluten-free dining by working to make all its restaurants friendly to gluten-free diners.
To that end, NFCA offers a Gluten-Free Resource Education Awareness Training (GREAT) program, free of charge. During the course, restaurant workers are taught what ingredients contain gluten, and what substitutes can be used instead. They learn that even a hint of flour in the air can be dangerous to some people, and that reusing utensils or pans that once touched gluten is a no-no.
Restaurants that complete the training can put a GREAT sticker on their door, signaling to diners that the chef has been properly trained in gluten-free protocol. The hopes are that one day the GREAT sticker will be as common as Zagat or "Best of Philadelphia."
NFCA is now working with the 76ers and the Phillies to help them add gluten-free foods to their stadium fare. She looks forward to the day when a child suffering from celiac disease can go to the ballpark and enjoy a traditional hot dog in a bun just like anybody else.
Watch for new or newly remodeled Wal-Marts to have a new Gluten Free 12 foot aisle. And don't forget the Great Value Brand will label Gluten Free if it truly is.
Red Robin – you can get a lettuce wrap burger (tell them to hold the seasoning) and it was delicious! It comes with a side salad.
Toby Keith's in the Hard Rock casino (used to be the Cherokee Casino out on I44). The fries are cooked separately from all battered foods, so the cheesy fries were safe. Also the baked potato wedges. Both were yummy! I think they are both appetizers, but the fries may be a side dish option.
They had lots of burgers and sandwiches that we could have gotten without the bun. The burger without the bun was delicious! It was the only burger or sandwich we tried, but they had some kind of bologna and turkey that day. They must use good quality meat, because the burger wasn't dry or tough. I skipped that stuff and went straight for the steak with fries. The steak is melt-in-your-mouth fabulous! Of course there was salad, too. And ice cream for dessert.
Minute Rice’s microwave single-serve bowls. They are noted as gluten free on the package and I just love the chicken-flavored one.
More GF cereals from General Mills: Rice Chex, Corn Chex, Cinnamon Chex, Chocolate Chex, Strawberry Chex, Honey Nut Chex, Trix, Kix (check ingredients…old boxes have oats), Honey Kix, Berry Berry Kix, Sprinkles Cookie Crisp, Chocolate Lucky Charms, Dora the Explorer
Tuesday, June 23, 2009
June 2009 Meeting
JUNE 2009
Guest Speakers – Thank you to Jessica Shaw with Organic Bistro Whole Life Meals for being here to discuss the new GF meals available at Akin’s and Whole Foods. Thank you Steven Newlon, Director of Marketing & Patient Recruitment from COR Clinical Research in OKC for discussing the research they are conducting on CD.
Jessica Shaw will be at Whole Foods near 41st & Peoria June 23rd from 1PM - ? handing out coupons for their products.
Miscellaneous – The NFCA is hosting a celiac awareness and gluten free education conference designed to educate restaurants, chefs, food suppliers and medical providers on the details of Celiac Disease and Gluten Free. The conference is in Northwest Arkansas on July 10th at the Holiday Inn Conference Center in Springdale, Arkansas. The room rate with a cut off date of Monday, June 29, 2009. To register for the conference please go to this link http://arkansasceli ac.eventbrite. com/.
We are encouraging the Gluten Free community to attend and to share this with their contacts in the food and medical industries. If anyone has any specific questions or needs information, please call Carolyn at 479-644-9909 or email celiac@glutenfreefriends-nwa.org
The Gluten-Free Cooking Expo is a two-day event featuring cooking demonstrations by professional chefs, cookbook authors and nutritionists. This year the Gluten-Free Cooking Expo takes place August 15-16 at the Wyndham Hotel in Lisle, Illinois, just outside of Chicago.
The Expo will focus on gluten-free and dairy-free cooking. (Click Here for a complete schedule) There is also a large Vendor Fair where you can sample and learn more about new gluten-free products.
There are several registration options, including one day or two day attendance. Visit the Gluten-Free Cooking Expo registration site to learn more. This year we are offering a special 10% group discount to members of CSA and GIG. Advanced Registration is required. Register at www.glutenfreeclasses.com
To receive the CSA/GIG discount, use the code GROUP when checking out.
Questions? Contact Jen Cafferty, Founder, The Gluten Free Cooking Expo jen@glutenfreeclasses.com or 847-217-1317
Plans are coming together for the 32nd Annual CSA Conference in Erie, PA. Mark your calendars for Oct. 30-Nov. 1. CSA Dietitian Day is Oct. 29. Hotel reservations can be made by calling 813-454-2005. The full schedule of speakers will be posted at http://www.csaceliacs.org/Conferences/2009Presenters.php as it is finalized.
CSA is seeking volunteers to help w/ national projects. If you are experienced in experimental GF baking and have an interst in doing some experimental GF baking w/ a new flour, contact Mary Schluckebier, Executive Director, P.O. Box 31700, Omaha, NE 68131-0700 or e-mail her at TestBaker@csaceliacs.org.
Food/Restaurants –The next scheduled Gluten Free Tour at Reasor’s on Tues, Aug 25th. It is a free tour that Reasor’s sponsors and participants can sign up on Reasor’s websites or by calling Lara Munding Veazey, MA, RD/LD, CPT of Nutrition Consultants of Tulsa at (918) 749-9077. The tour fills up fast and there is room for only about 14 people at a time. If you are newly diagnosed or struggling finding GF foods, I highly recommend this tour.
Sumatra Coffee Shop (SW side of 43rd & Peoria) now serves gluten-free sandwiches on soft, homemade bread, as well as gluten-free desserts! They're serving breakfast complete with GF bacon & eggs, sausage, toast, etc. They also have all kinds of great coffees, fruit smoothies, chai, teas, etc. The owner (Yvonne) uses separate equipment, utensils, & condiments for gluten-free cooking. Her employee, April, was diagnosed with celiac 8 years ago.
Gluten-free menu items beginning this Monday(June 1st)
Gluten-free Sandwiches (served w/ GF chips & pickle):
Classic BLT
Smoked Turkey Breast
Chicken Picca (Indian spices)
Turkey Artichoke
Smoked Ham
Grilled Chicken
Thai Beef
Vegetarian
Gluten-free Salads:
Grilled Chicken Salad
Grilled Chicken Caeser Salad
Sesame Chicken Salad
She is willing to expand her GF menu - to include grilled panini sandwiches the hours are 7:00 a.m. - 7:00 p.m. Monday - Saturday. Closed Sunday.
Next Meeting - Teri Whisenhunt CEO of Mixes From The Heartland in Amarillo, Tx will be here to tell us about their products and sell to those interested. They will have a limited number of items on hand to sell, but you can order now and they will bring them to the next meeting for you. All of their products carry the CSA/USA Seal of Recognition, and Teri told me they test a 3ppm or less. Visit them at http://www.mixesfromtheheartland.net/.
Guest Speakers – Thank you to Jessica Shaw with Organic Bistro Whole Life Meals for being here to discuss the new GF meals available at Akin’s and Whole Foods. Thank you Steven Newlon, Director of Marketing & Patient Recruitment from COR Clinical Research in OKC for discussing the research they are conducting on CD.
Jessica Shaw will be at Whole Foods near 41st & Peoria June 23rd from 1PM - ? handing out coupons for their products.
Miscellaneous – The NFCA is hosting a celiac awareness and gluten free education conference designed to educate restaurants, chefs, food suppliers and medical providers on the details of Celiac Disease and Gluten Free. The conference is in Northwest Arkansas on July 10th at the Holiday Inn Conference Center in Springdale, Arkansas. The room rate with a cut off date of Monday, June 29, 2009. To register for the conference please go to this link http://arkansasceli ac.eventbrite. com/.
We are encouraging the Gluten Free community to attend and to share this with their contacts in the food and medical industries. If anyone has any specific questions or needs information, please call Carolyn at 479-644-9909 or email celiac@glutenfreefriends-nwa.org
The Gluten-Free Cooking Expo is a two-day event featuring cooking demonstrations by professional chefs, cookbook authors and nutritionists. This year the Gluten-Free Cooking Expo takes place August 15-16 at the Wyndham Hotel in Lisle, Illinois, just outside of Chicago.
The Expo will focus on gluten-free and dairy-free cooking. (Click Here for a complete schedule) There is also a large Vendor Fair where you can sample and learn more about new gluten-free products.
There are several registration options, including one day or two day attendance. Visit the Gluten-Free Cooking Expo registration site to learn more. This year we are offering a special 10% group discount to members of CSA and GIG. Advanced Registration is required. Register at www.glutenfreeclasses.com
To receive the CSA/GIG discount, use the code GROUP when checking out.
Questions? Contact Jen Cafferty, Founder, The Gluten Free Cooking Expo jen@glutenfreeclasses.com or 847-217-1317
Plans are coming together for the 32nd Annual CSA Conference in Erie, PA. Mark your calendars for Oct. 30-Nov. 1. CSA Dietitian Day is Oct. 29. Hotel reservations can be made by calling 813-454-2005. The full schedule of speakers will be posted at http://www.csaceliacs.org/Conferences/2009Presenters.php as it is finalized.
CSA is seeking volunteers to help w/ national projects. If you are experienced in experimental GF baking and have an interst in doing some experimental GF baking w/ a new flour, contact Mary Schluckebier, Executive Director, P.O. Box 31700, Omaha, NE 68131-0700 or e-mail her at TestBaker@csaceliacs.org.
Food/Restaurants –The next scheduled Gluten Free Tour at Reasor’s on Tues, Aug 25th. It is a free tour that Reasor’s sponsors and participants can sign up on Reasor’s websites or by calling Lara Munding Veazey, MA, RD/LD, CPT of Nutrition Consultants of Tulsa at (918) 749-9077. The tour fills up fast and there is room for only about 14 people at a time. If you are newly diagnosed or struggling finding GF foods, I highly recommend this tour.
Sumatra Coffee Shop (SW side of 43rd & Peoria) now serves gluten-free sandwiches on soft, homemade bread, as well as gluten-free desserts! They're serving breakfast complete with GF bacon & eggs, sausage, toast, etc. They also have all kinds of great coffees, fruit smoothies, chai, teas, etc. The owner (Yvonne) uses separate equipment, utensils, & condiments for gluten-free cooking. Her employee, April, was diagnosed with celiac 8 years ago.
Gluten-free menu items beginning this Monday(June 1st)
Gluten-free Sandwiches (served w/ GF chips & pickle):
Classic BLT
Smoked Turkey Breast
Chicken Picca (Indian spices)
Turkey Artichoke
Smoked Ham
Grilled Chicken
Thai Beef
Vegetarian
Gluten-free Salads:
Grilled Chicken Salad
Grilled Chicken Caeser Salad
Sesame Chicken Salad
She is willing to expand her GF menu - to include grilled panini sandwiches the hours are 7:00 a.m. - 7:00 p.m. Monday - Saturday. Closed Sunday.
Next Meeting - Teri Whisenhunt CEO of Mixes From The Heartland in Amarillo, Tx will be here to tell us about their products and sell to those interested. They will have a limited number of items on hand to sell, but you can order now and they will bring them to the next meeting for you. All of their products carry the CSA/USA Seal of Recognition, and Teri told me they test a 3ppm or less. Visit them at http://www.mixesfromtheheartland.net/.
Thursday, May 28, 2009
New Research Opporunity
COR Clinical Research in Oklahoma City is currently seeking volunteers for a very important research study on Celiac Disease. The purpose of this research study is to determine the safety and effectiveness of an investigational medication to induce remission in subjects with Celiac Disease. The study is approximately 2.5 months long with approximately 6 visits and a 6 week “gluten challenge.” This is a very important study to the Celiac community, as there are no medications currently on the market for Celiac Disease and no other research being done on potential Celiac medications that we are aware of. This study hopes to provide enough FDA required information to someday have this medication on the market for Celiacs.
The basic eligibility requirements of the study are:
Ø Patients 18 – 72 years old
Ø Diagnosis of Celiac Disease by a biopsy
Ø On a Gluten-Free diet for at least 1 year
Ø Cannot have smoked within the last 6 months
Ø Cannot be a Diabetic
All qualifying participants will receive study visits, study medication, and tests performed at no charge. There will also be a nominal reimbursement for a patients travel costs. Anyone interested can simply call our office at 405-272-8481 from 8am-5pm Monday through Friday. Additionally people can get more information on our website at www.corclinical.com .
The basic eligibility requirements of the study are:
Ø Patients 18 – 72 years old
Ø Diagnosis of Celiac Disease by a biopsy
Ø On a Gluten-Free diet for at least 1 year
Ø Cannot have smoked within the last 6 months
Ø Cannot be a Diabetic
All qualifying participants will receive study visits, study medication, and tests performed at no charge. There will also be a nominal reimbursement for a patients travel costs. Anyone interested can simply call our office at 405-272-8481 from 8am-5pm Monday through Friday. Additionally people can get more information on our website at www.corclinical.com .
Thursday, April 23, 2009
Meeting Notes APRIL 2009
Meeting Notes April 2009
Miscellaneous – Thank you to our vendors: Becky Campbell with CC’s Gluten Free Foods, Staci Woodruff with BeautiControl Cosmetics, Jamie Patton with Xocai chocolate, Rose Salay with Mary Kay Cosmetics, and Iris Roper with Vitamist Spray Vitamins. We appreciate you being here!
A sad note – Barbara’s husband, Bob, died Monday morning. His funeral will be held Friday at 10 am at McClendon-Winters Funeral Home, 303 E Seventh St. Okmulgee, OK
A new cookbook coming out in May - Gluten Free Every Day Cookbook: More Than 100 Easy and Delicious Recipes from the Gluten-Free Chef by Robert M. Landolphi. Rob, a gluten-free chef and graduate of the Johnson & Wales University culinary school, is a certified culinary arts instructor and culinary operations manager at the University of Connecticut. The dishes in the book are delicious, quick, and easy, offering lots of flavor and not much fuss. Rob offers contemporary recipes for soups, muffins, main courses, sides, cookies, pies, and more, as well as great methods for encrusting and dusting and other tips for a satisfying gluten-free diet. The book is available through major bookstores and your favorite online retailer.
Gluten-Free Products Growth Feeds American Appetite- March 12, 2009 – from market research publisher Packaged Facts - For an American general population loaded with health problems but limited on health care, adopting a gluten-free diet is becoming an increasingly popular solution to alleviate complications from the numerous medical maladies associated with wheat and gluten consumption. As a result, the market for gluten-free food and beverage products grew at a compound annual growth rate (CAGR) of 28 percent from 2004 to 2008, to finish with almost $1.6 billion in retail sales last year, according to the brand-new report, “The Gluten-Free Food and Beverage Market: Trends and Developments Worldwide, 2nd Edition.”
Packaged Facts projects that ensuing years will experience double-digit growth due to an overwhelming number of positive factors, the most important of which is the existence of more gluten-free products in stores through both product introduction and the conversion of existing products to gluten-free status. By 2012 the market is expected to reach about $2.6 billion in sales.
To meet consumer demand, more than 225 marketers introduced new gluten-free products into the United States in 2008. From supermarkets with private label brands to single product-line specialty marketers, every conceivable type of food and beverage marketer in the United States introduced new products into the market last year.
TheGlutenSolution.com - The services offered at www.TheGlutenSolution.com provide consumers with an accurate and reliable tool that identifies which food products manufacturers claim to be gluten free, the steps taken to substantiate this claim, as well as provide industry with a platform that helps them effectively reach these consumers. They also include information on 16 other special diets for those who must try to combine a GF diet with other dietary needs (not just for those on a GFCF diet, but any combination of these 16 special diets for each of our members).
A new website called www.glutenfreereporter.com features slightly humorous reviews of restaurants with gluten-free menus. Based in Chicago, they are only able to visit restaurants in the area (along with a few places in cities they've vacationed in). They would love to cover GF restaurants nationwide, and are hoping our group would be willing to contribute some brief reviews of establishments in our area. Their email address is glutenfreereporter@gmail.com.
Medical – Quick Home Celiac Disease Test Debuts in Canada – www.celiac.com - the average time for a correct diagnosis of celiac disease is 10 years from the first onset of symptoms. That figure is 12 years for Canadians. Checking for celiac disease involves a simple blood test and usually a biopsy to follow up on positive results. Until now, that blood test was available solely through a doctor. Often, believing celiac to be rare, doctors are reluctant to order the blood test without overwhelming evidence. This can be problematic, as most people do not have classic symptoms, and are often asymptomatic. Numerous people have been forced to visit multiple doctors before confirming their diagnosis.
Recently, the Finnish firm AniBiotech developed a unique, patient-friendly celiac disease test kit that can be used to provide quick, accurate results at home. Marketed in Canada by 2G Pharma, the Biocard™ Celiac Test Kit works by metering gluten antibody levels from a tiny fingertip blood sample, and is the currently the only point-of-care celiac disease test kit approved by Health Canada.
The test tells users with a high degree of accuracy that they are either negative, developing celiac disease, or already have celiac disease. In the last two cases, the specially formulated Canadian kit encourages people to consult a physician for confirmation, which usually involves a biopsy of the small bowel.
The Biocard™ Celiac Test Kit is currently available in Canada at London Drugs, Rexall Pharma Plus, and other major Canadian retail chains.
The test kit is currently awaiting approval for U.S. distribution.
More information can be found at www.celiachometest.com.
Is Celiac Disease America’s Most Under-diagnosed Health Problem? – www.celiac.com - According to Dr. Alessio Fasano, medical director of the Center for Celiac Research, 2.5 million to 3 million people in the USA have celiac disease—it is twice as common as type 1 diabetes or breast cancer and twice as common as Crohn’s disease, ulcerative colitis and cystic fibrosis combined—yet, to date, no more than 150,000 of them have been diagnosed. This means that a full 2.35 to 2.85 million people in the USA have not been diagnosed and treated.
The symptoms of the disease can range from no symptoms at all, to mild weakness, bone pain, canker sores, chronic diarrhea, abdominal bloating, and progressive weight loss. If people with celiac disease continue to eat gluten, studies show that their risk of gastrointestinal cancer increases by a factor of 40 to 100 times over the general population. Further, gastrointestinal carcinoma or lymphoma develops in up to 15 percent of patients with untreated or refractory celiac disease. It is thus essential that the disease be quickly diagnosed and treated.
The last decade has seen an explosion in the understanding and awareness of celiac disease and in higher standards and increased availability of gluten-free foods.
Genetic Link Between Type 1 Diabetes, Celiac Disease Seen - (Health Day News) - If connection holds up, it might lead to cures. Researchers have identified common genetic mutations between type 1 diabetes and celiac disease, suggesting that the two inflammatory disorders may stem from a shared underlying mechanism.
The finding also suggests that the two diseases may be triggered by similar environmental factors.
"Our results spotlight that much more research needs to go into investigating the environmental factors involved," said study senior author John Todd, of the Cambridge Institute for Medical Research at the University of Cambridge in the U.K. "Additionally, research investigating whether there are benefits for type 1 diabetics knowing they are positive for celiac is important. There needs to be clinical research to see if this information could help them."
Knowledge on biological function could one day help spur treatments or cures for the diseases, the researchers suggested.
The study, released early online Wednesday by the New England Journal of Medicine, which will publish it in the Dec. 25 issue, was co-sponsored by the JDRF.
Potential New Therapies: A Future Without Gluten-free Diet?
• Enzyme Therapy - It has been shown that because of the high proline content, gliadin peptides are highly resistant to digestive processing by pancreatic and brush border proteases.[19] Enzyme supplement therapy with the use of bacterial prolyl endopeptidases has been proposed to promote complete digestion of cereal proteins and thus destroy T-cell multipotent epitopes.[20,21•] It remains to be assessed to what extent such intraluminal digestion may detoxify peptides particularly active in the most proximal part of the small intestine. An alternative approach to reduce gluten toxicity is based on a pretreatment of whole gluten or gluten-containing food with bacterial-derived peptidase.
• Engineered Grains and Inhibitory Gliadin Peptides - Either breeding programs or transgenic technology or both may lead to production of wheat that is devoid of biologically active peptide sequences. Site-directed mutagenesis of wheat, which would not affect the baking properties, has also been proposed, although the number and the repetition of such sequences in wheat render this approach difficult. The identification of specific epitopes may also provide a target for immunomodulation of antigenic peptides by engineering peptide analogues of gliadin epitope(s) with antagonistic effects of native peptide(s).
• Immunomodulatory Strategies - The autoantigenic tTG is mainly expressed in the lamina propria and its expression is upregulated by various stimuli, such as mechanical stress or bacterial/viral infection, during active celiac disease. Although the precise molecular details of this interaction in vivo remain unclear, selective inhibition of tTG in the small intestine might represent a therapeutically useful strategy for countering the immunotoxic response to dietary gluten in celiac disease. Other immunomodulatory targets, including IL-10, are possible alternative tools for promoting tolerance. However, evidence that gluten toxicity is not dependent only on T-cell recognition is growing. Activation of innate immunity has been demonstrated, and antibodies to IL-15 have been proposed, particularly in the treatment of refractory sprue because of the intraepithelial-lymphocyte-activating role of IL-15.[22] Nevertheless, one should realize that treated celiac disease is a benign condition and dietary treatment is safe, although strenuous. Therefore, any immunomodulatory approach must have a safety profile equivalent to that of the GFD, but with the advantage of increased compliance.
• Correction of the Intestinal Barrier Defect - The ability of the intestinal mucosa to regulate the trafficking of macromolecules between the environment and the host is an extremely important function of the intestine. Together with the gut-associated lymphoid tissue and the neuroendocrine network, the intestinal epithelial barrier, with its intercellular tight junctions, controls the equilibrium between tolerance and immunity to nonself antigens. When the finely tuned trafficking of macromolecules is dysregulated in genetically susceptible individuals, both intestinal and extraintestinal autoimmune disorders can occur.[23] This new paradigm subverts traditional theories underlying the development of autoimmunity, which are based on either molecular mimicry or the bystander effect or both, and suggests that the autoimmune process can be arrested if the interplay between genes and environmental triggers is prevented by re-establishing the intestinal barrier function. Indeed, in many cases, increased intestinal permeability seems to precede disease and causes an abnormality in antigen delivery that triggers the multiorgan process leading to the autoimmune response.[23] Therefore, correction of the intestinal barrier defects may represent an innovative therapeutic alternative to the treatment of autoimmune diseases, including celiac disease.
• The inhibition of zonulin, a modulator of intestinal permeability, has been already successfully explored in an animal model of autoimmunity.[24] More recently, the zonulin inhibitor AT-1001 has been tested in an inpatient, double-blind, randomized placebo-controlled human clinical trial to determine its safety, tolerability, and preliminary efficacy.[25••] Following acute gluten exposure, a 70% increase in intestinal permeability was detected in the placebo group, whereas no changes were seen in the AT-1001 group.[25••] Gastrointestinal symptoms were significantly more frequent among patients of the placebo group as compared with the AT-1001 group.[25••] Combined, these data suggest that AT-1001 is well tolerated and appears to reduce gluten-induced intestinal barrier dysfunction, proinflammatory cytokine production, and gastrointestinal symptoms in celiac patients.
• Vaccination - First Ever Celiac Disease Vaccine Trials Underway in Australia
Celiac.com 04/06/2009 - Celiac sufferers around the globe are anxiously awaiting word from Australia, as the world's first vaccine trials for the treatment of celiac disease get underway in Melbourne. In April, Bob Anderson, of the Walter and Eliza Hall Institute of Medical research, will begin the initial phase of the first-ever trials for a celiac vaccine that, if successful, might just mean the end of gluten-free diets for those with celiac disease.
The treatment has been successful in mice and is now ready to be tested on humans. In this initial phase, 40 volunteers with celiac disease will receive doses of the vaccine over an 11-month period to determine that it will cause no harm. Once researchers make sure the vaccine is safe, they will begin phase II trial, wherein they give vaccine doses to trial subjects and evaluate their responses to gluten challenges to determine the efficacy of the vaccine. Evaluation will include an examination of immune response and intestinal condition to determine the level of gluten tolerance.
The vaccine therapy involves repeatedly injecting solutions of gluten at increasing concentrations. The goal is to reduce and ultimately eliminate gluten sensitivity slowly, in a manner similar to common allergy desensitization treatments. The road to the development of this treatment has not been easy. Dr. Anderson is that rare combination of medical doctor (gastroenterologist) and PhD scientist who is able to develop practical treatments from bedside observations. After struggling to gain funding throughout his research career, he eventually patented his vaccine and co-founded Nexpep in an effort to develop the vaccine on his own. Because, like common dust and hay fever allergy therapies, this treatment approach may allow people with celiac disease to actually consume the gluten that produces the toxic reaction and reduce or even eliminate that reaction via vaccination. This approach will also serve as a model for a vaccine approach for other immune conditions such as type 1 diabetes, rheumatoid arthritis and multiple sclerosis.
Until recently, doctors thought celiac disease was rare. But according to statistics, it is twice as common as type1 diabetes or breast cancer. Celiac disease is now known to strike one per cent of Americans, but although modern blood testing has made early detection accurate and efficient, most people with celiac disease still do not know that they have it. Just 3% of sufferers have been diagnosed, leaving nearly 3 million people undiagnosed, and therefore unable to benefit form simple treatment in the form of a gluten-free diet. Long-term risks for untreated celiac disease include malnutrition, infertility, osteoporotic fractures, liver failure and various cancers. Symptoms can vary between individuals, with some experiencing no symptoms at all, even though damage to the bowel and general health still occurs whether or not symptoms are present.
Presently, long-term monitoring of dietary compliance for celiac patients is haphazard at best, and standards for gluten-free products have yet to take effect in the USA and other countries. Geoff Withers, director of pediatric gastroenterology at Brisbane's Royal Children's Hospital, points out that a gluten-free diet is "notoriously difficult. It is expensive and lifelong, and comes at a cost to the individual." Even treatment with a gluten-free disease is no panacea. People on gluten-free diets routinely suffer from a deficiency of certain vitamins, especially B vitamins. Roughly half of those following gluten-free diets have impaired intestinal healing due to compliance issues, and that means they are in danger of associated risks which include cancer.
A successful vaccine could have massive consequences for treatment of celiac disease, and might radically improve the lives of those with the condition.
Conclusion - Celiac disease is a unique model of autoimmunity in which some of the genes involved, the target autoantigen, and, most importantly, the environmental trigger, are all known. Therefore, celiac disease represents a superb model to study the genetic, immunological, epidemiological, and clinical aspects of multifactorial diseases. Given the undisputable role of gluten in inducing the autoimmune intestinal insult typical of celiac disease, the GFD is considered the only effective treatment for individuals with celiac disease. However, the implementation of a GFD is challenging and most of the time suboptimal. A better understanding of the complexity of the genetic/environmental interaction responsible for celiac disease development opens the way to explore alternative therapeutic strategies. It is possible that reducing the 'strength' or the access of the environmental component will prevent disease recurrence, particularly in those patients with a lower genetic load of predisposing genes.
Carlo Catassi; Alessio Fasano
Curr Opin Gastroenterol. 2008;24(6):687-691. ©2008 Lippincott Williams & Wilkins
How Much Gluten is Too Much? - New data are now available on the issue of the gluten threshold. By using a prospective, double-blind and placebo-controlled study design and the quantitative morphometry on small intestinal biopsies as the biomarker of gluten-induced damage, Catassi et al.[15] showed that 50 mg of daily gluten, if introduced for 3 months, was sufficient to cause a significant decrease in the villus height/crypt depth ratio in the small bowel mucosa of treated celiac disease patients. Neither the clinical nor the serological (IgA antitTG and AGA) findings showed a correlation with the minimal mucosal changes induced by these gluten traces. Because of the limited number of patients studied, no firm conclusions could be reached about the potential toxicity of 10 mg gluten/day, which remained a 'grey' area. A recent systematic review of the literature suggested that a daily gluten intake of less than 10 mg is unlikely to cause significant histological abnormalities.[17] These results should be interpreted in light of recent data regarding the consumption of wheat substitutes by celiac disease patients. In a large sample of European celiac disease patients, the median intake of wheat substitutes was 173-268 g/day, whereas 10% of patients consumed 400-531 g/day of these products.[18]
It can be concluded that the previously used 200 ppm value is not a safe threshold because the harmful gluten intake of 50 mg/day could be ingested even by patients consuming a moderate amount (250 g/day) of nominally gluten-free products. Even a 100-ppm threshold is not suitable for generalized use, especially when consumption of wheat substitutes is occasionally as high as 500 g/day. The threshold of 20 ppm keeps the intake of gluten from 'special celiac food' well below the amount of 50 mg/day, which allows a safety margin for the variable gluten sensitivity and dietary habits of patients.
Food - EU Debuts New Standards for Foods with 'Gluten-Free' Label - Celiac.com 02/06/2009 - The European Union’s Food Standards Agency (FSA) has issued new rules for foods carrying the ‘gluten-free’ label. Under the new rules, foods labeled ‘gluten-free’ must have less than 20 parts of gluten per million. This new standard represents a ten-fold reduction over the prior rules, which set the gluten limit at 200 parts per million.
The FSA also established a separate labeling category for cereals that have been specially processed to reduce gluten to levels below 100 parts per million. These foods may not be labeled ‘gluten-free,’ but must carry some other label such as ‘gluten-reduced,’ or ‘very-low gluten.’ The FSA indicates that the exact labeling for such products should be undertaken at the national level.
Foods that are naturally gluten-free and acceptable for a gluten-free diet cannot be labeled as ‘gluten-free,’ or ‘special-diet,’ but may say that they are ‘naturally gluten-free.’ The rules require the term ‘gluten-free’ or ‘very-low gluten’ to appear prominently on the package label in a way that indicates the “true nature of the food.” These rules are designed to help people with celiac disease make more informed decisions about the gluten content of the food they eat.
The new rules provide strict definitions for gluten and related grains and proteins, and gluten-free foods, and mandates standards for testing and measuring gluten levels in food.
They also mandate that quantitative determination of gluten in foods and ingredients be based on an immunologic method or other method providing at least equal sensitivity and specificity, and that all testing done on equipment sensitive to gluten at 10 mg gluten/kg or below.
The rules cite the enzyme-linked Immunoassay (ELISA) R5 Mendez method as the officially sanctioned qualitative analysis method for determining gluten presence in food.
European food makers can voluntarily adopt the new labeling system any time. Compliance becomes mandatory for all EU food makers on Jan. 1, 2012. Regarding the three-year delay, the FSA cited a need on the part of some manufacturers for time to make formulation and packaging changes.
Oat and quinoa possible semolina replacers in pasta - Formulating pasta with oats or quinoa may offer pasta manufacturers alternatives to traditional semolina, and open up opportunities in the gluten-free market, says new research from Italy.
Writing in the Journal of Cereal Science, researchers report that tagliatelle made from amaranth, quinoa and oat with the same of semolina pasta became possible with additives such as whey protein and pre-gelatinized starch.
“In future work a study of pasta quality, such as mechanical and sensorial characteristics during cooking and overcooking, will be carried out,” they concluded.
If future studies support the potential of the extract, it may see gluten-free breads formulated with amaranth ingredients adding to the ever-growing gluten-free market.
Source: Journal of Cereal Science
Volume 49, Issue 2, Pages 163-170
“Effects of additives on the rheological and mechanical properties of non-conventional fresh handmade tagliatelle”
Mallory’s Mud Pies at 38th & Harvard can do gluten free/allergy free wedding/ birthday/ anniversary/ special occasion cakes.
Kilkenny’s – now has a gluten free menu.
Schwan’s –has at least one GF meal available, go to www.schwans.com and you will see the GF pasta and turkey meatball meal from “The Celebrity Apprenctice”.
Ghiradelli Chocolates: In June, 2008, the Ghiradelli Chocolate Co. started production of a new milk chocolate bar, Luxe Milk Crisp, which has an ingredient containing barley malt. As a result, the line on which chocolate bars and squares are produced will now share a common line with barley gluten. The company takes the following measures to reduce cross contamination on their production lines: lines are cleaned between the changing from one product to the next. The first two batches of any product made are disposed of and not packaged. The chocolate chips by Ghiradelli, 60% Bittersweet, Semi-sweet and Milk Chocolate line and powder line of hot chocolates and cocoas will remain free of gluten.
General Mills Announcement – 3/31/09 - General Mills is reformulating the following Big G Cereals to gluten free status:
• Corn Chex
• Honey Nut Chex
• Strawberry Chex
• Chocolate Chex
• Cinnamon Chex
As was the case with Gluten Free Rice Chex, the barley malt ingredient was removed and replaced with another ingredient. Production has begun, so you may start seeing the gluten free formulas on store shelves now. All 5 products should be widely available across the U.S. by June 1, 2009. As with all reformulated products, both products may be on store shelves at the same time so please read labels/packaging carefully, examining the product packaging to ensure that the cereal inside the box is in fact the new, gluten free product. Look for "NOW GLUTEN FREE" or "GLUTEN FREE" on the front/side/back panels.
In addition, the following Betty Crocker Gluten Free mixes will be available at approximately the same time:
• Betty Crocker Gluten Free Brownie Mix
• Betty Crocker Gluten Free Chocolate Chip Cookie Mix
• Betty Crocker Gluten Free Devils Food Cake Mix
• Betty Crocker Gluten Free Yellow Cake Mix
However, understand that ingredients can be confusing. Betty Crocker wanta you to be assured that if the ingredient label does not list wheat, barley, rye, oats or gluten containing ingredients sourced from these grains, then the product would be gluten-free. Sources of gluten are listed on the label even if the source of gluten is part of another ingredient (such as flavoring or spice). Because ingredients may vary from one package to another due to product reformulation, you should use the products ingredient label to provide you with current and accurate information.
It was also mentioned at the meeting that Duncan Hines will soon be following suit with their own gluten free mixes. And starting in May, Starbucks will offer a gluten free cake at their stores.
Miscellaneous – Thank you to our vendors: Becky Campbell with CC’s Gluten Free Foods, Staci Woodruff with BeautiControl Cosmetics, Jamie Patton with Xocai chocolate, Rose Salay with Mary Kay Cosmetics, and Iris Roper with Vitamist Spray Vitamins. We appreciate you being here!
A sad note – Barbara’s husband, Bob, died Monday morning. His funeral will be held Friday at 10 am at McClendon-Winters Funeral Home, 303 E Seventh St. Okmulgee, OK
A new cookbook coming out in May - Gluten Free Every Day Cookbook: More Than 100 Easy and Delicious Recipes from the Gluten-Free Chef by Robert M. Landolphi. Rob, a gluten-free chef and graduate of the Johnson & Wales University culinary school, is a certified culinary arts instructor and culinary operations manager at the University of Connecticut. The dishes in the book are delicious, quick, and easy, offering lots of flavor and not much fuss. Rob offers contemporary recipes for soups, muffins, main courses, sides, cookies, pies, and more, as well as great methods for encrusting and dusting and other tips for a satisfying gluten-free diet. The book is available through major bookstores and your favorite online retailer.
Gluten-Free Products Growth Feeds American Appetite- March 12, 2009 – from market research publisher Packaged Facts - For an American general population loaded with health problems but limited on health care, adopting a gluten-free diet is becoming an increasingly popular solution to alleviate complications from the numerous medical maladies associated with wheat and gluten consumption. As a result, the market for gluten-free food and beverage products grew at a compound annual growth rate (CAGR) of 28 percent from 2004 to 2008, to finish with almost $1.6 billion in retail sales last year, according to the brand-new report, “The Gluten-Free Food and Beverage Market: Trends and Developments Worldwide, 2nd Edition.”
Packaged Facts projects that ensuing years will experience double-digit growth due to an overwhelming number of positive factors, the most important of which is the existence of more gluten-free products in stores through both product introduction and the conversion of existing products to gluten-free status. By 2012 the market is expected to reach about $2.6 billion in sales.
To meet consumer demand, more than 225 marketers introduced new gluten-free products into the United States in 2008. From supermarkets with private label brands to single product-line specialty marketers, every conceivable type of food and beverage marketer in the United States introduced new products into the market last year.
TheGlutenSolution.com - The services offered at www.TheGlutenSolution.com provide consumers with an accurate and reliable tool that identifies which food products manufacturers claim to be gluten free, the steps taken to substantiate this claim, as well as provide industry with a platform that helps them effectively reach these consumers. They also include information on 16 other special diets for those who must try to combine a GF diet with other dietary needs (not just for those on a GFCF diet, but any combination of these 16 special diets for each of our members).
A new website called www.glutenfreereporter.com features slightly humorous reviews of restaurants with gluten-free menus. Based in Chicago, they are only able to visit restaurants in the area (along with a few places in cities they've vacationed in). They would love to cover GF restaurants nationwide, and are hoping our group would be willing to contribute some brief reviews of establishments in our area. Their email address is glutenfreereporter@gmail.com.
Medical – Quick Home Celiac Disease Test Debuts in Canada – www.celiac.com - the average time for a correct diagnosis of celiac disease is 10 years from the first onset of symptoms. That figure is 12 years for Canadians. Checking for celiac disease involves a simple blood test and usually a biopsy to follow up on positive results. Until now, that blood test was available solely through a doctor. Often, believing celiac to be rare, doctors are reluctant to order the blood test without overwhelming evidence. This can be problematic, as most people do not have classic symptoms, and are often asymptomatic. Numerous people have been forced to visit multiple doctors before confirming their diagnosis.
Recently, the Finnish firm AniBiotech developed a unique, patient-friendly celiac disease test kit that can be used to provide quick, accurate results at home. Marketed in Canada by 2G Pharma, the Biocard™ Celiac Test Kit works by metering gluten antibody levels from a tiny fingertip blood sample, and is the currently the only point-of-care celiac disease test kit approved by Health Canada.
The test tells users with a high degree of accuracy that they are either negative, developing celiac disease, or already have celiac disease. In the last two cases, the specially formulated Canadian kit encourages people to consult a physician for confirmation, which usually involves a biopsy of the small bowel.
The Biocard™ Celiac Test Kit is currently available in Canada at London Drugs, Rexall Pharma Plus, and other major Canadian retail chains.
The test kit is currently awaiting approval for U.S. distribution.
More information can be found at www.celiachometest.com.
Is Celiac Disease America’s Most Under-diagnosed Health Problem? – www.celiac.com - According to Dr. Alessio Fasano, medical director of the Center for Celiac Research, 2.5 million to 3 million people in the USA have celiac disease—it is twice as common as type 1 diabetes or breast cancer and twice as common as Crohn’s disease, ulcerative colitis and cystic fibrosis combined—yet, to date, no more than 150,000 of them have been diagnosed. This means that a full 2.35 to 2.85 million people in the USA have not been diagnosed and treated.
The symptoms of the disease can range from no symptoms at all, to mild weakness, bone pain, canker sores, chronic diarrhea, abdominal bloating, and progressive weight loss. If people with celiac disease continue to eat gluten, studies show that their risk of gastrointestinal cancer increases by a factor of 40 to 100 times over the general population. Further, gastrointestinal carcinoma or lymphoma develops in up to 15 percent of patients with untreated or refractory celiac disease. It is thus essential that the disease be quickly diagnosed and treated.
The last decade has seen an explosion in the understanding and awareness of celiac disease and in higher standards and increased availability of gluten-free foods.
Genetic Link Between Type 1 Diabetes, Celiac Disease Seen - (Health Day News) - If connection holds up, it might lead to cures. Researchers have identified common genetic mutations between type 1 diabetes and celiac disease, suggesting that the two inflammatory disorders may stem from a shared underlying mechanism.
The finding also suggests that the two diseases may be triggered by similar environmental factors.
"Our results spotlight that much more research needs to go into investigating the environmental factors involved," said study senior author John Todd, of the Cambridge Institute for Medical Research at the University of Cambridge in the U.K. "Additionally, research investigating whether there are benefits for type 1 diabetics knowing they are positive for celiac is important. There needs to be clinical research to see if this information could help them."
Knowledge on biological function could one day help spur treatments or cures for the diseases, the researchers suggested.
The study, released early online Wednesday by the New England Journal of Medicine, which will publish it in the Dec. 25 issue, was co-sponsored by the JDRF.
Potential New Therapies: A Future Without Gluten-free Diet?
• Enzyme Therapy - It has been shown that because of the high proline content, gliadin peptides are highly resistant to digestive processing by pancreatic and brush border proteases.[19] Enzyme supplement therapy with the use of bacterial prolyl endopeptidases has been proposed to promote complete digestion of cereal proteins and thus destroy T-cell multipotent epitopes.[20,21•] It remains to be assessed to what extent such intraluminal digestion may detoxify peptides particularly active in the most proximal part of the small intestine. An alternative approach to reduce gluten toxicity is based on a pretreatment of whole gluten or gluten-containing food with bacterial-derived peptidase.
• Engineered Grains and Inhibitory Gliadin Peptides - Either breeding programs or transgenic technology or both may lead to production of wheat that is devoid of biologically active peptide sequences. Site-directed mutagenesis of wheat, which would not affect the baking properties, has also been proposed, although the number and the repetition of such sequences in wheat render this approach difficult. The identification of specific epitopes may also provide a target for immunomodulation of antigenic peptides by engineering peptide analogues of gliadin epitope(s) with antagonistic effects of native peptide(s).
• Immunomodulatory Strategies - The autoantigenic tTG is mainly expressed in the lamina propria and its expression is upregulated by various stimuli, such as mechanical stress or bacterial/viral infection, during active celiac disease. Although the precise molecular details of this interaction in vivo remain unclear, selective inhibition of tTG in the small intestine might represent a therapeutically useful strategy for countering the immunotoxic response to dietary gluten in celiac disease. Other immunomodulatory targets, including IL-10, are possible alternative tools for promoting tolerance. However, evidence that gluten toxicity is not dependent only on T-cell recognition is growing. Activation of innate immunity has been demonstrated, and antibodies to IL-15 have been proposed, particularly in the treatment of refractory sprue because of the intraepithelial-lymphocyte-activating role of IL-15.[22] Nevertheless, one should realize that treated celiac disease is a benign condition and dietary treatment is safe, although strenuous. Therefore, any immunomodulatory approach must have a safety profile equivalent to that of the GFD, but with the advantage of increased compliance.
• Correction of the Intestinal Barrier Defect - The ability of the intestinal mucosa to regulate the trafficking of macromolecules between the environment and the host is an extremely important function of the intestine. Together with the gut-associated lymphoid tissue and the neuroendocrine network, the intestinal epithelial barrier, with its intercellular tight junctions, controls the equilibrium between tolerance and immunity to nonself antigens. When the finely tuned trafficking of macromolecules is dysregulated in genetically susceptible individuals, both intestinal and extraintestinal autoimmune disorders can occur.[23] This new paradigm subverts traditional theories underlying the development of autoimmunity, which are based on either molecular mimicry or the bystander effect or both, and suggests that the autoimmune process can be arrested if the interplay between genes and environmental triggers is prevented by re-establishing the intestinal barrier function. Indeed, in many cases, increased intestinal permeability seems to precede disease and causes an abnormality in antigen delivery that triggers the multiorgan process leading to the autoimmune response.[23] Therefore, correction of the intestinal barrier defects may represent an innovative therapeutic alternative to the treatment of autoimmune diseases, including celiac disease.
• The inhibition of zonulin, a modulator of intestinal permeability, has been already successfully explored in an animal model of autoimmunity.[24] More recently, the zonulin inhibitor AT-1001 has been tested in an inpatient, double-blind, randomized placebo-controlled human clinical trial to determine its safety, tolerability, and preliminary efficacy.[25••] Following acute gluten exposure, a 70% increase in intestinal permeability was detected in the placebo group, whereas no changes were seen in the AT-1001 group.[25••] Gastrointestinal symptoms were significantly more frequent among patients of the placebo group as compared with the AT-1001 group.[25••] Combined, these data suggest that AT-1001 is well tolerated and appears to reduce gluten-induced intestinal barrier dysfunction, proinflammatory cytokine production, and gastrointestinal symptoms in celiac patients.
• Vaccination - First Ever Celiac Disease Vaccine Trials Underway in Australia
Celiac.com 04/06/2009 - Celiac sufferers around the globe are anxiously awaiting word from Australia, as the world's first vaccine trials for the treatment of celiac disease get underway in Melbourne. In April, Bob Anderson, of the Walter and Eliza Hall Institute of Medical research, will begin the initial phase of the first-ever trials for a celiac vaccine that, if successful, might just mean the end of gluten-free diets for those with celiac disease.
The treatment has been successful in mice and is now ready to be tested on humans. In this initial phase, 40 volunteers with celiac disease will receive doses of the vaccine over an 11-month period to determine that it will cause no harm. Once researchers make sure the vaccine is safe, they will begin phase II trial, wherein they give vaccine doses to trial subjects and evaluate their responses to gluten challenges to determine the efficacy of the vaccine. Evaluation will include an examination of immune response and intestinal condition to determine the level of gluten tolerance.
The vaccine therapy involves repeatedly injecting solutions of gluten at increasing concentrations. The goal is to reduce and ultimately eliminate gluten sensitivity slowly, in a manner similar to common allergy desensitization treatments. The road to the development of this treatment has not been easy. Dr. Anderson is that rare combination of medical doctor (gastroenterologist) and PhD scientist who is able to develop practical treatments from bedside observations. After struggling to gain funding throughout his research career, he eventually patented his vaccine and co-founded Nexpep in an effort to develop the vaccine on his own. Because, like common dust and hay fever allergy therapies, this treatment approach may allow people with celiac disease to actually consume the gluten that produces the toxic reaction and reduce or even eliminate that reaction via vaccination. This approach will also serve as a model for a vaccine approach for other immune conditions such as type 1 diabetes, rheumatoid arthritis and multiple sclerosis.
Until recently, doctors thought celiac disease was rare. But according to statistics, it is twice as common as type1 diabetes or breast cancer. Celiac disease is now known to strike one per cent of Americans, but although modern blood testing has made early detection accurate and efficient, most people with celiac disease still do not know that they have it. Just 3% of sufferers have been diagnosed, leaving nearly 3 million people undiagnosed, and therefore unable to benefit form simple treatment in the form of a gluten-free diet. Long-term risks for untreated celiac disease include malnutrition, infertility, osteoporotic fractures, liver failure and various cancers. Symptoms can vary between individuals, with some experiencing no symptoms at all, even though damage to the bowel and general health still occurs whether or not symptoms are present.
Presently, long-term monitoring of dietary compliance for celiac patients is haphazard at best, and standards for gluten-free products have yet to take effect in the USA and other countries. Geoff Withers, director of pediatric gastroenterology at Brisbane's Royal Children's Hospital, points out that a gluten-free diet is "notoriously difficult. It is expensive and lifelong, and comes at a cost to the individual." Even treatment with a gluten-free disease is no panacea. People on gluten-free diets routinely suffer from a deficiency of certain vitamins, especially B vitamins. Roughly half of those following gluten-free diets have impaired intestinal healing due to compliance issues, and that means they are in danger of associated risks which include cancer.
A successful vaccine could have massive consequences for treatment of celiac disease, and might radically improve the lives of those with the condition.
Conclusion - Celiac disease is a unique model of autoimmunity in which some of the genes involved, the target autoantigen, and, most importantly, the environmental trigger, are all known. Therefore, celiac disease represents a superb model to study the genetic, immunological, epidemiological, and clinical aspects of multifactorial diseases. Given the undisputable role of gluten in inducing the autoimmune intestinal insult typical of celiac disease, the GFD is considered the only effective treatment for individuals with celiac disease. However, the implementation of a GFD is challenging and most of the time suboptimal. A better understanding of the complexity of the genetic/environmental interaction responsible for celiac disease development opens the way to explore alternative therapeutic strategies. It is possible that reducing the 'strength' or the access of the environmental component will prevent disease recurrence, particularly in those patients with a lower genetic load of predisposing genes.
Carlo Catassi; Alessio Fasano
Curr Opin Gastroenterol. 2008;24(6):687-691. ©2008 Lippincott Williams & Wilkins
How Much Gluten is Too Much? - New data are now available on the issue of the gluten threshold. By using a prospective, double-blind and placebo-controlled study design and the quantitative morphometry on small intestinal biopsies as the biomarker of gluten-induced damage, Catassi et al.[15] showed that 50 mg of daily gluten, if introduced for 3 months, was sufficient to cause a significant decrease in the villus height/crypt depth ratio in the small bowel mucosa of treated celiac disease patients. Neither the clinical nor the serological (IgA antitTG and AGA) findings showed a correlation with the minimal mucosal changes induced by these gluten traces. Because of the limited number of patients studied, no firm conclusions could be reached about the potential toxicity of 10 mg gluten/day, which remained a 'grey' area. A recent systematic review of the literature suggested that a daily gluten intake of less than 10 mg is unlikely to cause significant histological abnormalities.[17] These results should be interpreted in light of recent data regarding the consumption of wheat substitutes by celiac disease patients. In a large sample of European celiac disease patients, the median intake of wheat substitutes was 173-268 g/day, whereas 10% of patients consumed 400-531 g/day of these products.[18]
It can be concluded that the previously used 200 ppm value is not a safe threshold because the harmful gluten intake of 50 mg/day could be ingested even by patients consuming a moderate amount (250 g/day) of nominally gluten-free products. Even a 100-ppm threshold is not suitable for generalized use, especially when consumption of wheat substitutes is occasionally as high as 500 g/day. The threshold of 20 ppm keeps the intake of gluten from 'special celiac food' well below the amount of 50 mg/day, which allows a safety margin for the variable gluten sensitivity and dietary habits of patients.
Food - EU Debuts New Standards for Foods with 'Gluten-Free' Label - Celiac.com 02/06/2009 - The European Union’s Food Standards Agency (FSA) has issued new rules for foods carrying the ‘gluten-free’ label. Under the new rules, foods labeled ‘gluten-free’ must have less than 20 parts of gluten per million. This new standard represents a ten-fold reduction over the prior rules, which set the gluten limit at 200 parts per million.
The FSA also established a separate labeling category for cereals that have been specially processed to reduce gluten to levels below 100 parts per million. These foods may not be labeled ‘gluten-free,’ but must carry some other label such as ‘gluten-reduced,’ or ‘very-low gluten.’ The FSA indicates that the exact labeling for such products should be undertaken at the national level.
Foods that are naturally gluten-free and acceptable for a gluten-free diet cannot be labeled as ‘gluten-free,’ or ‘special-diet,’ but may say that they are ‘naturally gluten-free.’ The rules require the term ‘gluten-free’ or ‘very-low gluten’ to appear prominently on the package label in a way that indicates the “true nature of the food.” These rules are designed to help people with celiac disease make more informed decisions about the gluten content of the food they eat.
The new rules provide strict definitions for gluten and related grains and proteins, and gluten-free foods, and mandates standards for testing and measuring gluten levels in food.
They also mandate that quantitative determination of gluten in foods and ingredients be based on an immunologic method or other method providing at least equal sensitivity and specificity, and that all testing done on equipment sensitive to gluten at 10 mg gluten/kg or below.
The rules cite the enzyme-linked Immunoassay (ELISA) R5 Mendez method as the officially sanctioned qualitative analysis method for determining gluten presence in food.
European food makers can voluntarily adopt the new labeling system any time. Compliance becomes mandatory for all EU food makers on Jan. 1, 2012. Regarding the three-year delay, the FSA cited a need on the part of some manufacturers for time to make formulation and packaging changes.
Oat and quinoa possible semolina replacers in pasta - Formulating pasta with oats or quinoa may offer pasta manufacturers alternatives to traditional semolina, and open up opportunities in the gluten-free market, says new research from Italy.
Writing in the Journal of Cereal Science, researchers report that tagliatelle made from amaranth, quinoa and oat with the same of semolina pasta became possible with additives such as whey protein and pre-gelatinized starch.
“In future work a study of pasta quality, such as mechanical and sensorial characteristics during cooking and overcooking, will be carried out,” they concluded.
If future studies support the potential of the extract, it may see gluten-free breads formulated with amaranth ingredients adding to the ever-growing gluten-free market.
Source: Journal of Cereal Science
Volume 49, Issue 2, Pages 163-170
“Effects of additives on the rheological and mechanical properties of non-conventional fresh handmade tagliatelle”
Mallory’s Mud Pies at 38th & Harvard can do gluten free/allergy free wedding/ birthday/ anniversary/ special occasion cakes.
Kilkenny’s – now has a gluten free menu.
Schwan’s –has at least one GF meal available, go to www.schwans.com and you will see the GF pasta and turkey meatball meal from “The Celebrity Apprenctice”.
Ghiradelli Chocolates: In June, 2008, the Ghiradelli Chocolate Co. started production of a new milk chocolate bar, Luxe Milk Crisp, which has an ingredient containing barley malt. As a result, the line on which chocolate bars and squares are produced will now share a common line with barley gluten. The company takes the following measures to reduce cross contamination on their production lines: lines are cleaned between the changing from one product to the next. The first two batches of any product made are disposed of and not packaged. The chocolate chips by Ghiradelli, 60% Bittersweet, Semi-sweet and Milk Chocolate line and powder line of hot chocolates and cocoas will remain free of gluten.
General Mills Announcement – 3/31/09 - General Mills is reformulating the following Big G Cereals to gluten free status:
• Corn Chex
• Honey Nut Chex
• Strawberry Chex
• Chocolate Chex
• Cinnamon Chex
As was the case with Gluten Free Rice Chex, the barley malt ingredient was removed and replaced with another ingredient. Production has begun, so you may start seeing the gluten free formulas on store shelves now. All 5 products should be widely available across the U.S. by June 1, 2009. As with all reformulated products, both products may be on store shelves at the same time so please read labels/packaging carefully, examining the product packaging to ensure that the cereal inside the box is in fact the new, gluten free product. Look for "NOW GLUTEN FREE" or "GLUTEN FREE" on the front/side/back panels.
In addition, the following Betty Crocker Gluten Free mixes will be available at approximately the same time:
• Betty Crocker Gluten Free Brownie Mix
• Betty Crocker Gluten Free Chocolate Chip Cookie Mix
• Betty Crocker Gluten Free Devils Food Cake Mix
• Betty Crocker Gluten Free Yellow Cake Mix
However, understand that ingredients can be confusing. Betty Crocker wanta you to be assured that if the ingredient label does not list wheat, barley, rye, oats or gluten containing ingredients sourced from these grains, then the product would be gluten-free. Sources of gluten are listed on the label even if the source of gluten is part of another ingredient (such as flavoring or spice). Because ingredients may vary from one package to another due to product reformulation, you should use the products ingredient label to provide you with current and accurate information.
It was also mentioned at the meeting that Duncan Hines will soon be following suit with their own gluten free mixes. And starting in May, Starbucks will offer a gluten free cake at their stores.
Monday, February 23, 2009
February 2009 Meeting Notes
February 2009
RESEARCH OPPORTUNITY - Celiac Sprue Association encourages qualified people to respond to the following attached research opportunity. At this time we highly encourage the newly diagnosed to participate. “Celiacs Helping Celiacs”.
COR Clinical Research in OKC is sponsoring a clinical study on Celiac Disease. If you are aged 18-75, are newly diagnosed with Celiac disease or have previously been diagnosed and the gluten-free diet did not resolve your symptoms you may qualify. For more information call COR at 1-405-272-8481. According to Study Coordinator, Lacey Bixler, in Oklahoma City,phone 405-272-8481, to be eligible you must be having symptoms or just have been dagnosed w/ unresolved symptoms. It is a 12 week long study and you would have to make 5 visits to the clinic in Oklahoma City.
Miscellaneous –
New web site offering people with food allergies information and a chance to try new products that don't contain gluten, nuts, dairy, soy and fish. Web site offers info, coupons for allergen-free foods – www.BeFreeForMe.com. People who sign up will get a monthly newsletter and coupons from manufacturers, retailers and restaurants that feature allergen-free items.
Faster Gluten Test - WebMD Health News - Nov. 14, 2008 -- Scientists have developed a new test that could speed up identification of gluten in foods. The new test flags gliadin, and is faster than and as sensitive as currently available test. The new gliadin test was "highly sensitive" and only took 90 minutes, compared to similar sensitivity from a currently available test that takes eight hours.
Food –
Signature Cakes in Jenks will do gluten-free cakes and cupcakes.
Uno to offer gluten-free pizzas nationwide - Uno Chicago Grill is going to offer gluten-free pizzas nationally after strong consumer demand during market tests of the products.
Uno officials said the gluten-free option has received a positive reaction from guests who suffer from celiac disease, as well as others who have an allergy or need to avoid eating wheat. The new pizzas, available with cheese or pepperoni toppings, have been tested at locations in Maine, Vermont, New Hampshire, Rhode Island and Massachusetts.
“Consumer reaction was so positive, and the chatter so strong on gluten-free blogs and websites, that our restaurants began receiving requests to carry the new pizza,” said Richard Hendrie, senior vice president of marketing for Boston-based Uno. “Because the demand was so strong, we decided to pull out all the stops to get the gluten-free pizza into our 200-plus stores as quickly as possible.”
The gluten-free pizza adds to Uno’s other wheat-free menu items, which include entrees, salads, sides and desserts. The chain also clearly labels menu items for ingredients that are linked to common allergies, including fish/shellfish, soy, tree nuts/peanuts, eggs, milk and wheat/gluten.
French Meadow Bakery now offers Gluten-Free Par-Baked Pizza Crusts. The crusts are packaged individually in aluminum tins for your convenience and to minimize the risk of cross-contamination. Each package offers 6 – 10.5 inch crusts for just $13.50. Visit www.frenchmeadow.com to order your Gluten-Free Pizza Crusts, then just top and bake!
TastesLikeRealFood.com- and mixesfromtheheartlandinnc.com – are now offering a variety of GF and sugar free mixes and products. The phone # is 806.355.7900. All of their products are ELISA tested and meet the 20 ppm GF standard. Enter coupon code CSA74105 for all orders placed on our site using this code through March 31, we'll donate 15% of the purchase price to your group.
Whole Foods Market Inc. has pulled three "gluten-free" products for children because the items actually contain gluten. The products made by Wellshire Farms Inc. of Swedesboro, N.J. -- Chicken Bites Dinosaur Shaped, chicken corn dogs and beef corn dogs -- contained between 116 and 2,200 parts per million of gluten. The chain also said it would create a strict "gluten-free" definition and begin monitoring its items so such problems don't recur. While the federal legal definition of gluten-free is imprecise, most experts view it as containing less than 20 parts per million, the newspaper said. Whole Foods initially refused to remove the products, saying Wellshire Farms was responsible for ensuring the items were safe and legal. But after receiving about 20 consumer complaints or inquiries, including from people who thought "gluten-free" meant zero gluten, Whole Foods pulled the products from its U.S. stores. Wellshire Farms now has a batter supplier that guarantees less than 20 parts per million of gluten, owner Louis Colameco said. The Wellshire Farms Web site lists all products in its Wellshire Kids line as "gluten-free."
From Buffalo Wild Wings - Thank you for your request. Attached is our recently completed Allergen Reference Sheet, Sauce Nutritional information and Burger Seasoning information for your review. Please note the preparation process below for the fried items in regards to the crossover of food. The Naked chicken tenders do not contain gluten however they are cooked on the grill. They should not be cooked on the same part of the grill as the burgers and they should use separate utensil (however I cannot guarantee).
You can speak with the manager at the location.
Preparation Processes:
- Our Traditional Wings are a fresh chicken product that we deep fry at 350'F and shake in the sauce of choice.
- Our Boneless Wings are a breaded chicken product that is also fried at 350'F and then shook in the sauce of choice. The same container is used to sauce the boneless and the traditional wings.
- Our grilled chicken products and burger products are cooked on a 550'F char broiler, a grill seasoning is applied at the time of cooking the seasoning does contain Dairy and Soy. The Burgers do contain gluten.
- Our Tortilla chips are fried fresh in the restaurant.
As a note, in the preparation process of all our fried items we do not segregate individual product into separate fryers when they are cooked so there is the potential of crossover of fried items and oil in the fryers.
In regards to the frying oil, we use a Beef Tallow Shortening from Cargill to fry all of our products.
The Shortening Ingredient Statement Lists: Deodorized Beef Tallow, BHT and Citric Acid (to protect flavor), Dimethylpolysiloxane (added as a stabilizer).
We hope you find this information helpful.
Buffalo Wild Wings - Research and Development
5500 Wayzata Blvd Suite 1600
Minneapolis, MN 55416
Medical –When prescribed a medication - Your physician and pharmacist have access to a large resource book called “Physicians Desk Reference” or PDR. Every medication (prescription and OTC) is listed along with a consumer number to call with questions. I highly suggest you contact the drug manufacturer directly and verify the gluten-free status of any drug you are taking. Even the minute amounts in a pill, taken regularly, can cause problems. Note, you can also go to www.pdrhealth.com to find out the manufacturer of a particular medication. I did not find phone numbers on their site, however, so you might need to search further on the internet. As for the FDA, they have not tackled the medication issue as yet. A couple of years ago, the American Celiac Disease Alliance introduce a bill to include such disclosure, but the bill did not pass. The Alliance keeps working on that issue as it is a big concern for so many. Meanwhile, the good news is that more and more vitamins and supplements are voluntarily labeling their products as “gluten-free” and “contains no wheat or gluten.”
Celiac Disease Vaccine Trials Slated for 2009
www.Celiac.com - There is currently no cure for the celiac disease. The only treatment is life-long adherence to a strict gluten-free diet. If a gluten-free diet is not followed, the disease can ultimately lead to ill health and life-threatening conditions including malnutrition, osteoporosis, bowel cancer, and may cause infertility problems.
The charity group Coeliac UK, recently hosted a conference at the Royal Society of Arts in central London where, among the latest findings in celiac disease research, they announced progress on the development of a possible vaccine for the condition.
Dr. Bob Anderson of the Autoimmunity and Transplantation Division of Australia’s Walter and Eliza Hall Institute has led a research team that has isolated the toxic elements of gluten, paving the way for a possible vaccine that will suppress or prevent gluten toxicity. The research indicates that the toxic, autoimmune response in celiac patients exposed to wheat is triggered by just few dominant peptides in the gluten protein. This small number of offending peptides makes it exponentially easier for researchers to develop a vaccine.
Dr. Anderson is a joint founder and CEO of Nexpep, an Australian company that is actively working to develop a vaccine to treat celiac disease. Dr. Anderson’s team has created a peptide-based therapeutic vaccine to treat the main problem T-cell epitopes of gluten. The vaccine has the potential to treat at about 80% of people with celiac disease and having the appropriate genetic background. Similar to traditional desensitization therapy for allergies, the peptide-based vaccines are given in multiple small doses over a course of injections in an effort to create immune tolerance not only to the selected gluten fragments, but also lower the toxicity of related toxic gluten molecules.
Nexpep is currently raising capital for a clinical trial program for a peptide-based therapeutic vaccine and intends to commence a Phase 1 clinical trial in the first half of 2009.
Alba Therapeutics announces enrollment of its first European patient in global phase IIb study of larazotide acetate – this is a global multi-center randomized, double-blind, placebo-controlled study that will evaluate the clinical and histological efficacy, safety and tolerability of larazotide acetate in 106 active CD subjects. Dr. Gemma Castillejo ( a principal investigator in the study), believes “this clinical trial has the potential to be a turning point in the search for treatments for celiac disease.” Larazotide acetate acts locally by inhibiting the opening of tight junctions in the cells lining the small intestine triggered by both gluten and inflammatory cytokines, thus reducing uptake of gluten. It also disrupts the intestinal permeability-inflammation loop, and reduces symptoms associated with CD. Larazotide acetate is orally formulated and has been given “fast track” designation by the US FDA for the treatment of CD,a nd is also being evaluated for the treatment of Crohn’s. For more info about Alba’s clinical trials, please visit www.clinicaltrials.gov and search for Alba Therapeutics.
Guest Speaker – Rene’ Norman, RDLD – these are the notes Rene sent to me…Thanks, Rene’!
Vitamin D – A Case for Sensible Sun Exposure
…or at least Supplements
By René Norman, RD/LD
Nutrition Consultants of Tulsa
918-749-9077
Vitamin D’s importance was discovered during the industrial revolution in Northern Great Britain. Children began to have rickets when the skies became polluted. No sun. No vitamin D.
Human population developed over 10’s of thousands of years with a lot of sun exposure. About 90-95% of vitamin D is from sun exposure for most people on earth.
Vitamin D is made when either:
UVB rays hit the skin.
Pro-vitamin D3 is converted to Pre-Vitamin D3
Has a methyl group added in the liver (25 hydroxy Vitamin D3), the storage form of Vitamin D and what is tested by blood work
Has the final methyl group added (mostly done in the kidneys) kidneys to for the biologically active form: 1, 25 (OH)2 D3.
Carried through blood attached to Vitamin D bound protein, made in the liver
OR….by taking supplements or consuming foods/beverages that are supplemented with vitamin D.
Why is vitamin D important?
Vitamin D receptors are found in virtually all tissues and cells. Most understood role for Vitamin D has is to pull calcium from the intestines into the blood to be delivered to bones and other tissues. Researchers have used population studies to see links between vitamin D and health for decades. Some clinical trials are showing how supplementing with vitamin D along with calcium improves bone density. Vitamin D is fat soluble and has better absorption when taken with some fat.
Who’s at risk?
Everybody. Just a few major groups to think about:
• People that have malabsorption issues including Chronhs, celiac disease, Roux En Y gastric bypass surgery.
• People with fat malapsorption.
• Breastfeeding infants whose mothers are vitamin D depleted.
• People with dark skin (African-Americans, Asian Indians).
• Elderly people in general because they often stay away from sun, have reduced ability to make vitamin D in their skin, have reduced ability to absorb nutrients.
• People with kidney or liver failure
How much?
Dosage/day Target population Recommended by:
400-800 IU people < 50 years old National Osteoporosis Foundation
800-1000 IU people 50+ years old
400 IU Children under 18 years old American Academy of Pediatrics
2000 IU Considered the upper tolerable dose for adults; chronic intake of this dose or more run the risk of hypercalcemia . * National Academy of Sciences: Committee that sets Daily Value (DV) levels
* If your vitamin D status is insufficient or deficient, you physician will likely put you on higher doses for a period of time until corrected. If you have concerns, please contact your physician.
What’s a normal lab (25 hydroxy vitmamin D) for vitamin D?
The National Institutes of Health suggests the following:
Value
(Differs between labs) Interpretation
<11 ng/mL <27.5 nmol/L Associated with vitamin D deficiency and rickets in infants and young children
<10-15 ng/mL
<25-37.5 nmol/L Generally considered inadequate for bone and overall health in healthy individuals
30+ ng/mL 75+ nmol/L Proposed by some as desirable for overall health & disease prevention, although a recent government-sponsored expert panel concluded that insufficient data are available to support these higher levels.
Consistently >200 ng/mL
Consistently >500 ng/mL Potential toxicity
The lab (vitamin D sent to ARUP Laboratories) at St. Francis indicates:
19 or less ng/mL Deficiency
20-29 ng/mL Insufficiency
30-80 ng/mL Optimal Level
>80 ng/mL Possible Toxicity
Even after getting 600-700 IU vitamin D per day (milk, supplements) 3 months before my vitamin D test, mine was 30 ng/mL. Interestingly, the first word from my doctor said to get in 800 IU/day. After calling him for something else, his nurse reports the doctor says 2000 IU/day and then re-test in 3 months. I’ll keep you posted.
OK…how much sun? Heresy!
Aren’t we supposed to avoid the sun or slather on a very high SPF sunscreen before heading out? Maybe not. If you:
• Have light colored skin (darker colored skin needs more sun to make vit. D)
• Are in your bathing suit at Cape Cod in July at noon
• See blue skies
• Spend 15-20 minutes outside at noon
• Do NOT have sunscreen on . . . . . .
You will produce about 20,000 IU vitamin D.
Our skin has a built in ability to prevent a toxic amount of vitamin D to be produced.
Researchers calculate that you can spend about 25% of the time it takes you to get a mild sunburn in the full sun and get adequate vitamin D during late spring, summer and early fall. Do this about 3 times per week and you’re vitamin D status should be excellent. The goal is NOT to tan, but rather think of sensible sun exposure.
Getting vitamin D from sun exposure depends on latitude, season, ozone layer, cloud cover, color of skin, and time of day. For example, there are 4 months you can’t get vitamin D in Boston (November-February).
Where else can you get vitamin D?
Supplements Look for D3; dose varies
Cod Liver Oil 1 tablespoon is about 1300 IU
Salmon & Mackerel About 300 IU per 3.5 oz serving size
Tuna & Sardines About 200-250 IU per 3.5 oz. serving size
Fluid Milk About 93 IU per 1 cup
Eggs from hens fed vitamin D Up to 20 IU per egg
Vitamin D References
www.nof.org
National Osteoporosis Foundation
www.pubmed.gov
A service of the National Library of Medicine and the National Institutes of Health. This website provides abstracts of published medical research from peer reviewed journals. A great place to start with your questions. I used the search “vitamin D AND celiac disease” and got nearly 200 citations. Information can be very technical. Focus on reading who they tested, results and conclusions.
www.vitamindhealth.org
Website sponser by Michael F. Holick, PhD, MD. This dermatologist has done a lot of research on vitamin D. There is a very informative and entertaining slideshow presentation he put on his website. Look for “External Links” and click on “Dr. Holick ECTS Presentation 5/2007.” I have no knowledge of any of the products or services that are linked to Dr. Holick’s website.
www.nig.gov
National Institutes of Health. Look for “Vitamin D Fact Sheet.”
Please note: The information presented is as accurate as I was able to determine at the time of my research. While I strived to present the information correctly, there may be information presented during my research that is incorrect or that may have been misinterpreted. This information is meant to be used as a resource to help you make decisions about your medical status and to help you communicate with your physician. It is not meant to be used to diagnose or treat your particular needs.
Vitamin D’s Role in Health
Bone Health
Medical Condition What the research indicates
Osteoporosis & Osteopenia • Vitamin D deficiency will lead to removal of both calcium and the collagen matrix that calcium is deposited on. Research indicates BOTH calcium and vitamin D must be taken to see health benefits.
• Post-menopausal women who reported 80% adherence to at least 1000 mg calcium and 400 IU vitamin D per day reduces risk of hip fractures by about 29%.
• Recent study on 757 girls from Beijing showed a 5.5% increase in bone mineral density when supplemented with vitamin D and calcium than the girls that were given placebos. The study lasted for 2 years.
• Vitamin D at 700-800 IU had a reduced risk of an initial fracture risk in ambulatory & institutionalized elderly people. However, second fractures were not reduced.
• Fracture risk for vertebral fractures is significantly decreased when blood levels are in the 75 ng/mL range.
Osteomalacia
(bone pain in adults) • Vitamin D deficiency can lead a deforming of the cover of the bone which carries pain sensing nerves, which can lead to throbbing, aching bone pain. Often described as achiness in muscles and bones and can often be misdiagnosed as fibromyalgia and chronic fatigue syndrome.
• Some studies show dramatic improvement in symptoms when vitamin D deficiency is corrected. Be patient, it will take 3 to 6 months for improvement in symptoms.
Rickets
(children) • Vitamin D deficiency can lead to soft bones in children and can present as growth retardation skeletal deformities like leg bowing or knocked knees, prominent knob like projections along the ribs next to the sternum. and muscle weakness. Infants can also develop misshapen heads.
Teeth • Elderly people with sufficient vitamin D and calcium intake have less loss of teeth.
Periodontal Disease • Patients with high vitamin D levels have a reduced risk of developing periodontal disease. However, this was true for people over 50 years of age, not younger than 50 year.
Cancer
Medical Condition What the research indicates
General • As early as 1941, scientists observed that people living at higher latitude were at higher risk of dying of cancer.
• In the 1980’s and 1990’s, reports began to surface about how living at higher latitude and being at higher risk of vitamin D deficiency increased risk of developing and dying of cancers of the colon, rectum, prostate, breast and ovary. More recently, researchers are seeing increased risk for developing other cancers of the esophagus, pancreas, and leukemia at higher latitudes. Prostate cancer may have a vitamin D link.
• Healthy postmenopausal women taking 1400-1500 mg calcium/day plus 1100 IU/day of vitamin D had a 60% lower relative risk for developing cancer of any type.
• Men who had a vitamin D level of at least 25 nnol/L had a 17% reduced risk of overall cancer incident and a 29% reduction in cancer-related mortality.
Breast • Information is conflicting.
• Supplementing with just vitamin D doesn’t seem to result in reduction of incidence.
• Some research showed that supplementing with both Vitamin D and calcium led to a substantial reduction in breast cancer for pre-menopausal women, but not for women post-menopause.
• Women with blood levels of about 52 ng/mL had a 50% lower risk of developing breast cancer than those with levels < 13, ng/mL. However, this corresponds to a vitamin D dose of about 4000 IU/day.
• Research from the Women’s Health Initiative shows that there is no reduction in breast cancer incidence for supplementing with 1000 mg calcium/day with 400 IU vitamin D/day.
Gastrointestinal • Population studies suggest for men, higher vitamin D levels (at least 25 nmol/L) indicates a 45% reduction in GI cancer incidence and a 45% reduction in GI cancer mortality.
• An analysis of several studies suggests that people with Vitamin D levels >33 ng/mL have a 50% lower risk of developing colorectal cancer compared to those with levels at or below 12 ng/mL.
Colorectal • An analysis of several studies suggests that people with vitamin D levels >33 ng/mL have a 50% lower rsk of developing colorectal cancert that those with levels at below 12 ng/mL.
Auto-Immune Disorders and Type 2 Diabetes
Medical Condition What the research indicates
Muliple Sclerosis • People who lived the first 10 years of their life north of the 35o latitude (Atlanta, GA) had a 100% risk of developing MS.
• Recent studies suggest that women and men that have a long term history of supplementing with at least 400 IU vitamin D per day have a 40% reduced risk of developing MS.
Type 1 Diabetes • A study from Finland started with supplementing infants through age 1 with 2,000 IU vitamin D per day. These kids were followed for 31 years. This group was found to have a 78% reduced risk of developing type 1 diabetes. Children who had deficient vitamin at the same time and were followed for that same 31 years showed a 300% increased risk of developing type 1 diabetes
• Mice that were genetically prone to developing type 1 diabetes were treated with vitamin D. An 80% reduction in the development of type 1 diabetes.
Type 2 Diabetes • Vitamin D has a receptor cell in the beta islet cells of the pancreas, which helps these cells produce insulin.
• Scientists have observed that the relative risk of developing type 2 diabetes is reduced by as much as 33% in men and women who increase their intake of vitamin D to vitamin D above 800 IU along with 1,000 mg calcium.
Rheumatoid Arthritis • Women with long term supplementation of 400 IU/day of vitamin D had a reduction of developing RA by up to 42%.
Psoriasis • A vitamin D based topical treatment has effectively treated plaque type psoriasis in some people.
Infectious Diseases
Medical Condition What the research indicates
Tuberculosis • It has long been observed that people with TB do better when treated with vitamin D or exposed to sunlight. Vitamin D is needed to produce a peptide in macrophages, an immune cell, so that it can kill infectious agents.
Influenza • It is speculated that one of the reasons influenza is more prevalent in winter in tepid climate is due to lack of vitamin D based on lack of sun exposure.
Muscles Function and Falls
Medical Condition What the research indicates
Sarcopenia
Weakness due to loss of muscle mass • Low Vitamin D leads to sarcopenia, or loss of muscle mass. This happens as we age no matter what we do.
• Increased risk of falls when muscles get weak and people begin to be unsteady on their feet.
• Studies indicate you must supplement with both vitamin D and calcium.
• Post-menopausal women are the most likely to benefit from a reduction in falls following vitamin D therapy.
Obesity & Weight Management
Medical Condition What the research indicates
Obesity & weight management • Population studies have seen a link between low levels of vitamin D being associated with being more likely to be obese.
• Evidence from a prospective large, high quality trial demonstrated that postmenopausal women that daily took 1,000 mg of calcium plus 400 IU vitamin D were significantly less likely to gain small to moderate amounts of weight compared to the women that took a placebo.
• From this same study, women that took calcium plus vitamin D were more likely to lose weight and maintain their weight, but was seen primarily in women that had inadequate calcium intake at the beginning of the study (<1200 mg/day.)
• Obese people tend to have lower vitamin D in their blood because much of it gets bound in fat cells and isn’t easily released from those fat cells.
Low vitamin D has also been associated with depression and schizophrenia, but the research isn’t conclusive….yet.
Final note: Research suggests that some undiagnosed or newly diagnosed celiac patients have secondary hyperparathyroid. One study indicated that testing parathyroid (PTH) should be included when evaluating for celiac disease. This gland regulates blood calcium and can essentially dissolve calcium from your bones to be delivered to the blood. This may be why some adults with celiac disease diagnosed during adulthood have a lower bone mineral density than those without celiac disease. There was 1 case of an older man that was diagnosed with celiac disease AFTER using bisphosonates (brand not named) to treat osteoporosis when his blood calcium when low. Once celiac was diagnosed, he used risendronate (Actonel) after his diagnosis and had normal calcium. This doesn’t seem to be well researched for those that have been GF for several years. It is not known if celiac patients have different needs for osteoporosis medications. But it would certainly be interesting to ask your doctors about it.
One final note…As CSA celebrates over 30 years of service we are by far the largest and the most active celiac organization in the United States. We lobby Congress, fund research, test gluten-free food claims, work with the medical community and publish The CSA Gluten-Free Product Listing so we can enjoy our food without worry. And CSA provides the only national toll free celiac support line responding to over 1,200 calls a month!
Your annual financial contribution and volunteerism makes all this possible. But, there is more.
This January CSA took on the most ambitious physician education program ever in the United States…The CSA-PEP (CSA Celiac Disease and Gluten Sensitivity Physician Education Program). The goal of CSA-PEP is to provide doctors and medical students the information and tools they need to quickly and suc¬cessfully diagnose and treat their patients. Through the efforts of CSA members, the CSA-PEP will accomplish the following objectives:
• Deliver info to physicians and med students that will increase the suspicion necessary to detect patients at risk of CD and gluten sensitivity.
• Increase the rate of successful assessment, diagnosis and treatment of CD and Gluten sensitivity in the US through direct education of physicians.
• Establish recognition of the prevalence as well as the importance of early diagnosis and treatment in the mainstream medical community.
• Introduce physicians to CSA-PEP, CSA, CSA chapters, partners and sponsors.
• Create public awareness of CD, CSA, and CSA_PEP
Your participation is needed to make this program a success. CSA is looking for people to help on a local, regional and national level. Contact CSA if you have experience in any of the following areas: corporate or event fund-raising, information distribution, public relations and program management.
OR…For a gift of $70 or more you can receive a CSA-PEP packet for your doctor. All donations to CSA-USA are fully tax deductible. Be sure to check with your employer about donation matching programs. Then contact CSA to get involved with programs like CSA-PEP and fundraising activities toll-free 1-877-CSA-4-CSA (1-877-272-4272) or email www.celiacs@csaceliacs.org. Click here to donate on-line Celiac Sprue Association.
RESEARCH OPPORTUNITY - Celiac Sprue Association encourages qualified people to respond to the following attached research opportunity. At this time we highly encourage the newly diagnosed to participate. “Celiacs Helping Celiacs”.
COR Clinical Research in OKC is sponsoring a clinical study on Celiac Disease. If you are aged 18-75, are newly diagnosed with Celiac disease or have previously been diagnosed and the gluten-free diet did not resolve your symptoms you may qualify. For more information call COR at 1-405-272-8481. According to Study Coordinator, Lacey Bixler, in Oklahoma City,phone 405-272-8481, to be eligible you must be having symptoms or just have been dagnosed w/ unresolved symptoms. It is a 12 week long study and you would have to make 5 visits to the clinic in Oklahoma City.
Miscellaneous –
New web site offering people with food allergies information and a chance to try new products that don't contain gluten, nuts, dairy, soy and fish. Web site offers info, coupons for allergen-free foods – www.BeFreeForMe.com. People who sign up will get a monthly newsletter and coupons from manufacturers, retailers and restaurants that feature allergen-free items.
Faster Gluten Test - WebMD Health News - Nov. 14, 2008 -- Scientists have developed a new test that could speed up identification of gluten in foods. The new test flags gliadin, and is faster than and as sensitive as currently available test. The new gliadin test was "highly sensitive" and only took 90 minutes, compared to similar sensitivity from a currently available test that takes eight hours.
Food –
Signature Cakes in Jenks will do gluten-free cakes and cupcakes.
Uno to offer gluten-free pizzas nationwide - Uno Chicago Grill is going to offer gluten-free pizzas nationally after strong consumer demand during market tests of the products.
Uno officials said the gluten-free option has received a positive reaction from guests who suffer from celiac disease, as well as others who have an allergy or need to avoid eating wheat. The new pizzas, available with cheese or pepperoni toppings, have been tested at locations in Maine, Vermont, New Hampshire, Rhode Island and Massachusetts.
“Consumer reaction was so positive, and the chatter so strong on gluten-free blogs and websites, that our restaurants began receiving requests to carry the new pizza,” said Richard Hendrie, senior vice president of marketing for Boston-based Uno. “Because the demand was so strong, we decided to pull out all the stops to get the gluten-free pizza into our 200-plus stores as quickly as possible.”
The gluten-free pizza adds to Uno’s other wheat-free menu items, which include entrees, salads, sides and desserts. The chain also clearly labels menu items for ingredients that are linked to common allergies, including fish/shellfish, soy, tree nuts/peanuts, eggs, milk and wheat/gluten.
French Meadow Bakery now offers Gluten-Free Par-Baked Pizza Crusts. The crusts are packaged individually in aluminum tins for your convenience and to minimize the risk of cross-contamination. Each package offers 6 – 10.5 inch crusts for just $13.50. Visit www.frenchmeadow.com to order your Gluten-Free Pizza Crusts, then just top and bake!
TastesLikeRealFood.com- and mixesfromtheheartlandinnc.com – are now offering a variety of GF and sugar free mixes and products. The phone # is 806.355.7900. All of their products are ELISA tested and meet the 20 ppm GF standard. Enter coupon code CSA74105 for all orders placed on our site using this code through March 31, we'll donate 15% of the purchase price to your group.
Whole Foods Market Inc. has pulled three "gluten-free" products for children because the items actually contain gluten. The products made by Wellshire Farms Inc. of Swedesboro, N.J. -- Chicken Bites Dinosaur Shaped, chicken corn dogs and beef corn dogs -- contained between 116 and 2,200 parts per million of gluten. The chain also said it would create a strict "gluten-free" definition and begin monitoring its items so such problems don't recur. While the federal legal definition of gluten-free is imprecise, most experts view it as containing less than 20 parts per million, the newspaper said. Whole Foods initially refused to remove the products, saying Wellshire Farms was responsible for ensuring the items were safe and legal. But after receiving about 20 consumer complaints or inquiries, including from people who thought "gluten-free" meant zero gluten, Whole Foods pulled the products from its U.S. stores. Wellshire Farms now has a batter supplier that guarantees less than 20 parts per million of gluten, owner Louis Colameco said. The Wellshire Farms Web site lists all products in its Wellshire Kids line as "gluten-free."
From Buffalo Wild Wings - Thank you for your request. Attached is our recently completed Allergen Reference Sheet, Sauce Nutritional information and Burger Seasoning information for your review. Please note the preparation process below for the fried items in regards to the crossover of food. The Naked chicken tenders do not contain gluten however they are cooked on the grill. They should not be cooked on the same part of the grill as the burgers and they should use separate utensil (however I cannot guarantee).
You can speak with the manager at the location.
Preparation Processes:
- Our Traditional Wings are a fresh chicken product that we deep fry at 350'F and shake in the sauce of choice.
- Our Boneless Wings are a breaded chicken product that is also fried at 350'F and then shook in the sauce of choice. The same container is used to sauce the boneless and the traditional wings.
- Our grilled chicken products and burger products are cooked on a 550'F char broiler, a grill seasoning is applied at the time of cooking the seasoning does contain Dairy and Soy. The Burgers do contain gluten.
- Our Tortilla chips are fried fresh in the restaurant.
As a note, in the preparation process of all our fried items we do not segregate individual product into separate fryers when they are cooked so there is the potential of crossover of fried items and oil in the fryers.
In regards to the frying oil, we use a Beef Tallow Shortening from Cargill to fry all of our products.
The Shortening Ingredient Statement Lists: Deodorized Beef Tallow, BHT and Citric Acid (to protect flavor), Dimethylpolysiloxane (added as a stabilizer).
We hope you find this information helpful.
Buffalo Wild Wings - Research and Development
5500 Wayzata Blvd Suite 1600
Minneapolis, MN 55416
Medical –When prescribed a medication - Your physician and pharmacist have access to a large resource book called “Physicians Desk Reference” or PDR. Every medication (prescription and OTC) is listed along with a consumer number to call with questions. I highly suggest you contact the drug manufacturer directly and verify the gluten-free status of any drug you are taking. Even the minute amounts in a pill, taken regularly, can cause problems. Note, you can also go to www.pdrhealth.com to find out the manufacturer of a particular medication. I did not find phone numbers on their site, however, so you might need to search further on the internet. As for the FDA, they have not tackled the medication issue as yet. A couple of years ago, the American Celiac Disease Alliance introduce a bill to include such disclosure, but the bill did not pass. The Alliance keeps working on that issue as it is a big concern for so many. Meanwhile, the good news is that more and more vitamins and supplements are voluntarily labeling their products as “gluten-free” and “contains no wheat or gluten.”
Celiac Disease Vaccine Trials Slated for 2009
www.Celiac.com - There is currently no cure for the celiac disease. The only treatment is life-long adherence to a strict gluten-free diet. If a gluten-free diet is not followed, the disease can ultimately lead to ill health and life-threatening conditions including malnutrition, osteoporosis, bowel cancer, and may cause infertility problems.
The charity group Coeliac UK, recently hosted a conference at the Royal Society of Arts in central London where, among the latest findings in celiac disease research, they announced progress on the development of a possible vaccine for the condition.
Dr. Bob Anderson of the Autoimmunity and Transplantation Division of Australia’s Walter and Eliza Hall Institute has led a research team that has isolated the toxic elements of gluten, paving the way for a possible vaccine that will suppress or prevent gluten toxicity. The research indicates that the toxic, autoimmune response in celiac patients exposed to wheat is triggered by just few dominant peptides in the gluten protein. This small number of offending peptides makes it exponentially easier for researchers to develop a vaccine.
Dr. Anderson is a joint founder and CEO of Nexpep, an Australian company that is actively working to develop a vaccine to treat celiac disease. Dr. Anderson’s team has created a peptide-based therapeutic vaccine to treat the main problem T-cell epitopes of gluten. The vaccine has the potential to treat at about 80% of people with celiac disease and having the appropriate genetic background. Similar to traditional desensitization therapy for allergies, the peptide-based vaccines are given in multiple small doses over a course of injections in an effort to create immune tolerance not only to the selected gluten fragments, but also lower the toxicity of related toxic gluten molecules.
Nexpep is currently raising capital for a clinical trial program for a peptide-based therapeutic vaccine and intends to commence a Phase 1 clinical trial in the first half of 2009.
Alba Therapeutics announces enrollment of its first European patient in global phase IIb study of larazotide acetate – this is a global multi-center randomized, double-blind, placebo-controlled study that will evaluate the clinical and histological efficacy, safety and tolerability of larazotide acetate in 106 active CD subjects. Dr. Gemma Castillejo ( a principal investigator in the study), believes “this clinical trial has the potential to be a turning point in the search for treatments for celiac disease.” Larazotide acetate acts locally by inhibiting the opening of tight junctions in the cells lining the small intestine triggered by both gluten and inflammatory cytokines, thus reducing uptake of gluten. It also disrupts the intestinal permeability-inflammation loop, and reduces symptoms associated with CD. Larazotide acetate is orally formulated and has been given “fast track” designation by the US FDA for the treatment of CD,a nd is also being evaluated for the treatment of Crohn’s. For more info about Alba’s clinical trials, please visit www.clinicaltrials.gov and search for Alba Therapeutics.
Guest Speaker – Rene’ Norman, RDLD – these are the notes Rene sent to me…Thanks, Rene’!
Vitamin D – A Case for Sensible Sun Exposure
…or at least Supplements
By René Norman, RD/LD
Nutrition Consultants of Tulsa
918-749-9077
Vitamin D’s importance was discovered during the industrial revolution in Northern Great Britain. Children began to have rickets when the skies became polluted. No sun. No vitamin D.
Human population developed over 10’s of thousands of years with a lot of sun exposure. About 90-95% of vitamin D is from sun exposure for most people on earth.
Vitamin D is made when either:
UVB rays hit the skin.
Pro-vitamin D3 is converted to Pre-Vitamin D3
Has a methyl group added in the liver (25 hydroxy Vitamin D3), the storage form of Vitamin D and what is tested by blood work
Has the final methyl group added (mostly done in the kidneys) kidneys to for the biologically active form: 1, 25 (OH)2 D3.
Carried through blood attached to Vitamin D bound protein, made in the liver
OR….by taking supplements or consuming foods/beverages that are supplemented with vitamin D.
Why is vitamin D important?
Vitamin D receptors are found in virtually all tissues and cells. Most understood role for Vitamin D has is to pull calcium from the intestines into the blood to be delivered to bones and other tissues. Researchers have used population studies to see links between vitamin D and health for decades. Some clinical trials are showing how supplementing with vitamin D along with calcium improves bone density. Vitamin D is fat soluble and has better absorption when taken with some fat.
Who’s at risk?
Everybody. Just a few major groups to think about:
• People that have malabsorption issues including Chronhs, celiac disease, Roux En Y gastric bypass surgery.
• People with fat malapsorption.
• Breastfeeding infants whose mothers are vitamin D depleted.
• People with dark skin (African-Americans, Asian Indians).
• Elderly people in general because they often stay away from sun, have reduced ability to make vitamin D in their skin, have reduced ability to absorb nutrients.
• People with kidney or liver failure
How much?
Dosage/day Target population Recommended by:
400-800 IU people < 50 years old National Osteoporosis Foundation
800-1000 IU people 50+ years old
400 IU Children under 18 years old American Academy of Pediatrics
2000 IU Considered the upper tolerable dose for adults; chronic intake of this dose or more run the risk of hypercalcemia . * National Academy of Sciences: Committee that sets Daily Value (DV) levels
* If your vitamin D status is insufficient or deficient, you physician will likely put you on higher doses for a period of time until corrected. If you have concerns, please contact your physician.
What’s a normal lab (25 hydroxy vitmamin D) for vitamin D?
The National Institutes of Health suggests the following:
Value
(Differs between labs) Interpretation
<11 ng/mL <27.5 nmol/L Associated with vitamin D deficiency and rickets in infants and young children
<10-15 ng/mL
<25-37.5 nmol/L Generally considered inadequate for bone and overall health in healthy individuals
30+ ng/mL 75+ nmol/L Proposed by some as desirable for overall health & disease prevention, although a recent government-sponsored expert panel concluded that insufficient data are available to support these higher levels.
Consistently >200 ng/mL
Consistently >500 ng/mL Potential toxicity
The lab (vitamin D sent to ARUP Laboratories) at St. Francis indicates:
19 or less ng/mL Deficiency
20-29 ng/mL Insufficiency
30-80 ng/mL Optimal Level
>80 ng/mL Possible Toxicity
Even after getting 600-700 IU vitamin D per day (milk, supplements) 3 months before my vitamin D test, mine was 30 ng/mL. Interestingly, the first word from my doctor said to get in 800 IU/day. After calling him for something else, his nurse reports the doctor says 2000 IU/day and then re-test in 3 months. I’ll keep you posted.
OK…how much sun? Heresy!
Aren’t we supposed to avoid the sun or slather on a very high SPF sunscreen before heading out? Maybe not. If you:
• Have light colored skin (darker colored skin needs more sun to make vit. D)
• Are in your bathing suit at Cape Cod in July at noon
• See blue skies
• Spend 15-20 minutes outside at noon
• Do NOT have sunscreen on . . . . . .
You will produce about 20,000 IU vitamin D.
Our skin has a built in ability to prevent a toxic amount of vitamin D to be produced.
Researchers calculate that you can spend about 25% of the time it takes you to get a mild sunburn in the full sun and get adequate vitamin D during late spring, summer and early fall. Do this about 3 times per week and you’re vitamin D status should be excellent. The goal is NOT to tan, but rather think of sensible sun exposure.
Getting vitamin D from sun exposure depends on latitude, season, ozone layer, cloud cover, color of skin, and time of day. For example, there are 4 months you can’t get vitamin D in Boston (November-February).
Where else can you get vitamin D?
Supplements Look for D3; dose varies
Cod Liver Oil 1 tablespoon is about 1300 IU
Salmon & Mackerel About 300 IU per 3.5 oz serving size
Tuna & Sardines About 200-250 IU per 3.5 oz. serving size
Fluid Milk About 93 IU per 1 cup
Eggs from hens fed vitamin D Up to 20 IU per egg
Vitamin D References
www.nof.org
National Osteoporosis Foundation
www.pubmed.gov
A service of the National Library of Medicine and the National Institutes of Health. This website provides abstracts of published medical research from peer reviewed journals. A great place to start with your questions. I used the search “vitamin D AND celiac disease” and got nearly 200 citations. Information can be very technical. Focus on reading who they tested, results and conclusions.
www.vitamindhealth.org
Website sponser by Michael F. Holick, PhD, MD. This dermatologist has done a lot of research on vitamin D. There is a very informative and entertaining slideshow presentation he put on his website. Look for “External Links” and click on “Dr. Holick ECTS Presentation 5/2007.” I have no knowledge of any of the products or services that are linked to Dr. Holick’s website.
www.nig.gov
National Institutes of Health. Look for “Vitamin D Fact Sheet.”
Please note: The information presented is as accurate as I was able to determine at the time of my research. While I strived to present the information correctly, there may be information presented during my research that is incorrect or that may have been misinterpreted. This information is meant to be used as a resource to help you make decisions about your medical status and to help you communicate with your physician. It is not meant to be used to diagnose or treat your particular needs.
Vitamin D’s Role in Health
Bone Health
Medical Condition What the research indicates
Osteoporosis & Osteopenia • Vitamin D deficiency will lead to removal of both calcium and the collagen matrix that calcium is deposited on. Research indicates BOTH calcium and vitamin D must be taken to see health benefits.
• Post-menopausal women who reported 80% adherence to at least 1000 mg calcium and 400 IU vitamin D per day reduces risk of hip fractures by about 29%.
• Recent study on 757 girls from Beijing showed a 5.5% increase in bone mineral density when supplemented with vitamin D and calcium than the girls that were given placebos. The study lasted for 2 years.
• Vitamin D at 700-800 IU had a reduced risk of an initial fracture risk in ambulatory & institutionalized elderly people. However, second fractures were not reduced.
• Fracture risk for vertebral fractures is significantly decreased when blood levels are in the 75 ng/mL range.
Osteomalacia
(bone pain in adults) • Vitamin D deficiency can lead a deforming of the cover of the bone which carries pain sensing nerves, which can lead to throbbing, aching bone pain. Often described as achiness in muscles and bones and can often be misdiagnosed as fibromyalgia and chronic fatigue syndrome.
• Some studies show dramatic improvement in symptoms when vitamin D deficiency is corrected. Be patient, it will take 3 to 6 months for improvement in symptoms.
Rickets
(children) • Vitamin D deficiency can lead to soft bones in children and can present as growth retardation skeletal deformities like leg bowing or knocked knees, prominent knob like projections along the ribs next to the sternum. and muscle weakness. Infants can also develop misshapen heads.
Teeth • Elderly people with sufficient vitamin D and calcium intake have less loss of teeth.
Periodontal Disease • Patients with high vitamin D levels have a reduced risk of developing periodontal disease. However, this was true for people over 50 years of age, not younger than 50 year.
Cancer
Medical Condition What the research indicates
General • As early as 1941, scientists observed that people living at higher latitude were at higher risk of dying of cancer.
• In the 1980’s and 1990’s, reports began to surface about how living at higher latitude and being at higher risk of vitamin D deficiency increased risk of developing and dying of cancers of the colon, rectum, prostate, breast and ovary. More recently, researchers are seeing increased risk for developing other cancers of the esophagus, pancreas, and leukemia at higher latitudes. Prostate cancer may have a vitamin D link.
• Healthy postmenopausal women taking 1400-1500 mg calcium/day plus 1100 IU/day of vitamin D had a 60% lower relative risk for developing cancer of any type.
• Men who had a vitamin D level of at least 25 nnol/L had a 17% reduced risk of overall cancer incident and a 29% reduction in cancer-related mortality.
Breast • Information is conflicting.
• Supplementing with just vitamin D doesn’t seem to result in reduction of incidence.
• Some research showed that supplementing with both Vitamin D and calcium led to a substantial reduction in breast cancer for pre-menopausal women, but not for women post-menopause.
• Women with blood levels of about 52 ng/mL had a 50% lower risk of developing breast cancer than those with levels < 13, ng/mL. However, this corresponds to a vitamin D dose of about 4000 IU/day.
• Research from the Women’s Health Initiative shows that there is no reduction in breast cancer incidence for supplementing with 1000 mg calcium/day with 400 IU vitamin D/day.
Gastrointestinal • Population studies suggest for men, higher vitamin D levels (at least 25 nmol/L) indicates a 45% reduction in GI cancer incidence and a 45% reduction in GI cancer mortality.
• An analysis of several studies suggests that people with Vitamin D levels >33 ng/mL have a 50% lower risk of developing colorectal cancer compared to those with levels at or below 12 ng/mL.
Colorectal • An analysis of several studies suggests that people with vitamin D levels >33 ng/mL have a 50% lower rsk of developing colorectal cancert that those with levels at below 12 ng/mL.
Auto-Immune Disorders and Type 2 Diabetes
Medical Condition What the research indicates
Muliple Sclerosis • People who lived the first 10 years of their life north of the 35o latitude (Atlanta, GA) had a 100% risk of developing MS.
• Recent studies suggest that women and men that have a long term history of supplementing with at least 400 IU vitamin D per day have a 40% reduced risk of developing MS.
Type 1 Diabetes • A study from Finland started with supplementing infants through age 1 with 2,000 IU vitamin D per day. These kids were followed for 31 years. This group was found to have a 78% reduced risk of developing type 1 diabetes. Children who had deficient vitamin at the same time and were followed for that same 31 years showed a 300% increased risk of developing type 1 diabetes
• Mice that were genetically prone to developing type 1 diabetes were treated with vitamin D. An 80% reduction in the development of type 1 diabetes.
Type 2 Diabetes • Vitamin D has a receptor cell in the beta islet cells of the pancreas, which helps these cells produce insulin.
• Scientists have observed that the relative risk of developing type 2 diabetes is reduced by as much as 33% in men and women who increase their intake of vitamin D to vitamin D above 800 IU along with 1,000 mg calcium.
Rheumatoid Arthritis • Women with long term supplementation of 400 IU/day of vitamin D had a reduction of developing RA by up to 42%.
Psoriasis • A vitamin D based topical treatment has effectively treated plaque type psoriasis in some people.
Infectious Diseases
Medical Condition What the research indicates
Tuberculosis • It has long been observed that people with TB do better when treated with vitamin D or exposed to sunlight. Vitamin D is needed to produce a peptide in macrophages, an immune cell, so that it can kill infectious agents.
Influenza • It is speculated that one of the reasons influenza is more prevalent in winter in tepid climate is due to lack of vitamin D based on lack of sun exposure.
Muscles Function and Falls
Medical Condition What the research indicates
Sarcopenia
Weakness due to loss of muscle mass • Low Vitamin D leads to sarcopenia, or loss of muscle mass. This happens as we age no matter what we do.
• Increased risk of falls when muscles get weak and people begin to be unsteady on their feet.
• Studies indicate you must supplement with both vitamin D and calcium.
• Post-menopausal women are the most likely to benefit from a reduction in falls following vitamin D therapy.
Obesity & Weight Management
Medical Condition What the research indicates
Obesity & weight management • Population studies have seen a link between low levels of vitamin D being associated with being more likely to be obese.
• Evidence from a prospective large, high quality trial demonstrated that postmenopausal women that daily took 1,000 mg of calcium plus 400 IU vitamin D were significantly less likely to gain small to moderate amounts of weight compared to the women that took a placebo.
• From this same study, women that took calcium plus vitamin D were more likely to lose weight and maintain their weight, but was seen primarily in women that had inadequate calcium intake at the beginning of the study (<1200 mg/day.)
• Obese people tend to have lower vitamin D in their blood because much of it gets bound in fat cells and isn’t easily released from those fat cells.
Low vitamin D has also been associated with depression and schizophrenia, but the research isn’t conclusive….yet.
Final note: Research suggests that some undiagnosed or newly diagnosed celiac patients have secondary hyperparathyroid. One study indicated that testing parathyroid (PTH) should be included when evaluating for celiac disease. This gland regulates blood calcium and can essentially dissolve calcium from your bones to be delivered to the blood. This may be why some adults with celiac disease diagnosed during adulthood have a lower bone mineral density than those without celiac disease. There was 1 case of an older man that was diagnosed with celiac disease AFTER using bisphosonates (brand not named) to treat osteoporosis when his blood calcium when low. Once celiac was diagnosed, he used risendronate (Actonel) after his diagnosis and had normal calcium. This doesn’t seem to be well researched for those that have been GF for several years. It is not known if celiac patients have different needs for osteoporosis medications. But it would certainly be interesting to ask your doctors about it.
One final note…As CSA celebrates over 30 years of service we are by far the largest and the most active celiac organization in the United States. We lobby Congress, fund research, test gluten-free food claims, work with the medical community and publish The CSA Gluten-Free Product Listing so we can enjoy our food without worry. And CSA provides the only national toll free celiac support line responding to over 1,200 calls a month!
Your annual financial contribution and volunteerism makes all this possible. But, there is more.
This January CSA took on the most ambitious physician education program ever in the United States…The CSA-PEP (CSA Celiac Disease and Gluten Sensitivity Physician Education Program). The goal of CSA-PEP is to provide doctors and medical students the information and tools they need to quickly and suc¬cessfully diagnose and treat their patients. Through the efforts of CSA members, the CSA-PEP will accomplish the following objectives:
• Deliver info to physicians and med students that will increase the suspicion necessary to detect patients at risk of CD and gluten sensitivity.
• Increase the rate of successful assessment, diagnosis and treatment of CD and Gluten sensitivity in the US through direct education of physicians.
• Establish recognition of the prevalence as well as the importance of early diagnosis and treatment in the mainstream medical community.
• Introduce physicians to CSA-PEP, CSA, CSA chapters, partners and sponsors.
• Create public awareness of CD, CSA, and CSA_PEP
Your participation is needed to make this program a success. CSA is looking for people to help on a local, regional and national level. Contact CSA if you have experience in any of the following areas: corporate or event fund-raising, information distribution, public relations and program management.
OR…For a gift of $70 or more you can receive a CSA-PEP packet for your doctor. All donations to CSA-USA are fully tax deductible. Be sure to check with your employer about donation matching programs. Then contact CSA to get involved with programs like CSA-PEP and fundraising activities toll-free 1-877-CSA-4-CSA (1-877-272-4272) or email www.celiacs@csaceliacs.org. Click here to donate on-line Celiac Sprue Association.
Sunday, December 21, 2008
More Photos from Holiday Luncheon 2008
Here's another batch of photos from the holiday luncheon. Thank you Tracey for sending them to me...
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