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  1. This article originally appeared in the Winter 2004 edition of Celiac.com's Journal of Gluten-Sensitivity. Celiac.com 09/19/2014 - Experts have decreed that pure oats are safe for people with celiac disease(1,2,3). The definition of this disease is based on a very specific type of injury to the intestinal wall that heals following the removal of gluten from the diet. This intestinal damage, called villous atrophy, is caused by the interaction between the immune system and certain proteins found in wheat, rye, and barley. Identical proteins are not found in oats (although there is also some variation between the protein groups found in wheat, rye, and barley). Further, many newly diagnosed celiac patients have been shown to recover from their celiac symptoms while eating significant quantities of oats and their intestinal biopsies do not show signs of villous atrophy1 (Admittedly, the quantity of oats consumed by these study subjects does not rival the grain protein consumption in a regular, gluten-laden diet, but the quantity is significant). Therefore, this food is considered safe for celiac consumption. Given these facts, it is not surprising that many gastroenterologists are now recommending that their patients eat oats. Some claim that patients are more likely to follow a gluten-free diet if that diet allows oats. Others point to the definition of celiac disease, which clearly requires gluten-induced villous atrophy. Still others insist that since we now know which proteins cause the villous atrophy, oats must be safe for celiac patients to consume. There are several problems with these perspectives, beginning with the assumption that patients will be more compliant with the diet if it includes oats. I have explored the medical literature and have been unable to find a single study that investigates dietary compliance as a function of including oats in the gluten-free diet. I’d be happy to hear about such a study. But until the question is investigated, the assumption is just one more opinion afloat in a sea of unfounded beliefs about grains and diet. Many celiac patients experience an addictive element in gluten. I have long suspected that is the result of morphine-like, opioid peptides found in the digests of gluten(4-8). Are some peptides from oats capable of producing these opioids? Has anyone investigated that issue? Again, I can find no evidence that this issue has been studied. Reliance on the biopsy to reveal problems with oat consumption is another relevant problem. As many of us can attest, and the medical literature reports, gluten challenges that intentionally involve ingestion of relatively large quantities of gluten often fail to reveal villous atrophy for weeks, months, and sometimes, years(9). Many celiac patients will also agree that despite our best efforts at compliance, gluten sometimes manages to sneak into our diets, particularly in the early months of following the diet. Yet a second biopsy usually shows dramatic healing of the intestinal wall, despite these dietary errors. Clearly, the intestinal biopsy is a fairly crude tool for measuring intestinal health. Its use in exonerating oats thus becomes suspect. An even more troubling element of this issue is that there are gastroenterologists who are recommending that their patients consume breakfast cereals that contain malt flavoring, because patients consuming such small quantities of malt do not show villous atrophy(10). Also troubling is the fact that many of the studies that support the safety of oats have not employed the Marsh system for identifying intestinal injury, a refinement that significantly increases the sensitivity of the intestinal biopsy. The greatest weakness of the pro-oats position is the underlying assumption that we fully understand celiac disease and gluten sensitivity. This is simply not the case. The research shows that some celiacs do develop symptoms when consuming oats. While most newly diagnosed celiacs experience reduced symptoms and improved health, this may simply be the result of consuming less grain-derived protein. Researchers have long known that even partial compliance with the gluten-free diet produces health improvements in celiac patients(11). The definition of celiac disease that requires villous atrophy followed the discovery of the beneficial impact of the gluten-free diet by more than 20 years (If in doubt about this point, please refer to the English translation of Dr. Dicke’s Ph.D. thesis at http://www.dangerousgrains.com). Our current understanding of the disease began with the observed benefits of the gluten-free diet. Intestinal biopsies were a much later development. A similar debate arose regarding the inclusion of wheat starch. It was long held to be a safe nutrient in the gluten-free diet in many European countries. In fact, the studies that showed a reduced risk of cancer and a variety of celiac-associated conditions were often conducted among patient groups living where wheat starch was deemed acceptable(12, 13). Yet when wheat starch consumption was studied in Canada, against a back-drop of zero tolerance, most of the subjects developed signs and symptoms of celiac disease(14). Many celiacs and gluten-sensitive individuals know that their symptoms do not fit with the conventional view of celiac disease. Some of us believe that there is a continuum of severity. Others believe that there are many sub-types of celiac disease. Still others believe, me included, that it really doesn’t matter whether a person has intestinal damage. The important, defining characteristic should be whether a person is mounting an immune response against the proteins in the most common substance in our food supply. Whatever our beliefs we turn to the experts when faced with health concerns and crises. However, those answers often rely on the medical definition of celiac disease, where villous atrophy heals in response to a gluten-free diet. In cases where the biopsy was improperly taken, or too few samples were taken, or patchy intestinal lesions were missed, or other forms of gluten-induced ailments are causing symptoms, we may not get answers that aid our health. Many individuals who are gluten sensitive will be, under such circumstances, dismissed with a diagnosis of IBS. Given the facts, we have several hurdles to overcome before we can, in my opinion, render an informed judgment about the safety of oats. We need a much better understanding of gluten-induced disease in all of its manifestations. We also need a definition of celiac disease that is more useful to the patient who is experiencing symptoms of gluten sensitivity/celiac disease. As part of this, we also need a test that is more accurate, and can identify celiac disease after beginning the diet––a challenge that many of us face. Until we have overcome these hurdles, any pronouncement regarding the safety of oats is premature. Further research is, in my opinion, the greatest need of the celiac community. We need to know more, not just about celiac disease, but about the whole range of nutritional and pathological impacts of eating grains. In my own quest, I have learned from the experiences of other celiac patients. Each new facet of my own experience has been illuminated by someone else’s story. I have come to understand ADHD as a frequent companion of celiac disease. Learning disabilities are also common among celiacs. Behavioral disturbances are the norm, and speech problems are common. My understanding continues to grow as I hear from others who struggle with gluten sensitivity. Despite its usefulness, this patient-to-patient network of information sharing is not enough. We need well designed, well executed research. We need a better understanding of our disease and how to protect future generations from the current, inaccurate assumptions about grains. The oats question is only one facet of a much larger need for more information and better testing methods. Sources: Storsrud S, Olsson M, Arvidsson Lenner R, Nilsson LA, Nilsson O, Kilander A. Adult coeliac patients do tolerate large amounts of oats. Eur J Clin Nutr. 2003 Jan;57(1):163-9. Kilmartin C, Lynch S, Abuzakouk M, Wieser H, Feighery C. Avenin fails to induce a Th1 response in coeliac tissue following in vitro culture. Gut. 2003 Jan;52(1):47-52. Janatuinen EK, Kemppainen TA, Julkunen RJ, Kosma VM, Maki M, Heikkinen M, Uusitupa MI. No harm from five year ingestion of oats in coeliac disease. Gut. 2002 Mar;50(3):332-5. Teschemacher H. Opioid receptor ligands derived from food proteins. Curr Pharm Des. 2003;9(16):1331-44. Review. Yoshikawa M, Takahashi M, Yang S. Delta opioid peptides derived from plant proteins. Curr Pharm Des. 2003;9(16):1325-30. Review. Horvath K, Graf L, Walcz E, Bodanszky H, Schuler D. Naloxone antagonises effect of alpha-gliadin on leucocyte migration in patients with coeliac disease. Lancet. 1985 Jul 27;2(8448):184-5. Zioudrou C, Streaty RA, Klee WA. Opioid peptides derived from food proteins. The exorphins. J Biol Chem. 1979 Apr 10;254(7):2446-9. Hoggan R. Considering wheat, rye, and barley proteins as aids to carcinogens. Med Hypotheses. 1997 Sep;49(3):285-8. Fukudome S, Yoshikawa M. Opioid peptides derived from wheat gluten: their isolation and characterization. FEBS Lett. 1992 Jan 13;296(1):107-11. Kuitunen P, Savilahti E, Verkasalo M. Late mucosal relapse in a boy with coeliac disease and cow's milk allergy. Acta Paediatr Scand. 1986 Mar;75(2):340-2. Holmes, et. al. "Malignancy in coeliac disease - effect of a gluten free diet" Gut 1989; 30: 333-338 Holmes GK. Coeliac disease and malignancy.Dig Liver Dis. 2002 Mar;34(3):229-37 Collin P, Pukkala E, Reunala T. Malignancy and survival in dermatitis herpetiformis: a comparison with coeliac disease. Gut. 1996 Apr;38(4):528-30. Chartrand LJ, Russo PA, Duhaime AG, Seidman EG. Wheat starch intolerance in patients with celiac disease. J Am Diet Assoc. 1997 Jun;97(6):612-8.
  2. Celiac.com 08/03/2016 - As part of its mission, Gluten Free Watchdog performs gluten testing on gluten-free products and shares that information with the gluten-free community. They've tested many gluten-free products over the years, and collected data from their efforts. Over the past five years, Gluten Free Watchdog has been testing oat products labeled gluten-free that list oats as the first or second ingredient. In all, they've done professional testing on thirty-five different commercial products. They've recently released their findings, and while they don't name any names, they do offer some good general insight into gluten-contamination levels in general. All testing for Gluten Free Watchdog was conducted by Bia Diagnostics, LLC using the sandwich R5 ELISA (Ridascreen Gliadin R7001) and cocktail extraction—Mendez method. Based on testing data from Gluten Free Watchdog, oat products labeled gluten-free have an almost three times higher risk of gluten contamination as compared to labeled gluten-free foods as a whole. The results showed 28 of 35 or 80% of oat products testing below 5 parts per million of gluten, and 2 of 35 or 6% of oat products testing at or above 5 ppm but below 20 ppm of gluten. Meanwhile, 5 of 35 or 14% of oat products tested at or above 20 ppm of gluten. The good news, of course, is that 86% percent oat products tested below 20 parts per million of gluten, but that's not nearly as good as the 95% of all gluten-free foods tested to date that have tested below 20 ppm of gluten. So, the bad news is that the 14% of oat products testing at or above 20 ppm of gluten is nearly three times higher than for gluten-free foods in general. Main culprits testing at or above 20 ppm of gluten included "gluten-free" labeled oat breadcrumbs, rolled oats, granola, hot oat cereal, and granola. Gluten Free Watchdog's main recommendation for consumers is to know the source of the oats you are eating, and to make sure you're getting your oats form a safe and trustworthy source. If you have a concern, check with the manufacturer to make sure they source ALL oats from a supplier of purity protocol oats, such as gluten-free Harvest, Avena, Montana Gluten-Free. Read more at Gluten-free Watchdog.org.
  3. Hi guys, so I don't know about anyone else, but I have a lot of problems with the brand Kinnikinnick. I've never heard of other people having a problem with it, but for whatever reason, I can't eat it-which sucks because they're the only brand i know that makes graham crackers) So, I've tried Kinnikinnick on five seperate occasions, all different products. I've had their bread, their cinnamon sugar donuts, animal crackers, graham crackers and their vanilla cake. Each time I tried the product (whether to see if i might still have the same reaction or I wasn't paying enough attention to the box to tell it was the same brand) I would get a foggy mind, upset stomach, bone cramping, my heart would race, i felt terrible and my panic attacks sparked like mad, causing me to go into a frantic state of feeling sick and completely emotional and upset. It is literally one of the worst feelings ever. I don't have any other intolerances other than lactose and it has never given me a reaction like what I just described. So, i was wondering if anyone else had similar experiences with the brand or if there's something else I should be looking out for.
  4. Celiac.com 10/01/2014 - News that snack foods, like cookies, crackers, salty snacks and snack bars now account for more than half of new gluten-free product sales has some leading analysts and industry representatives sounding the alarm. Speaking at a webinar hosted by the Institute of Food Technologists, Ardent Mills’ director of commercial insights, David Sheluga PhD, announced that the market is starting to get a bit saturated with gluten-free snack products, and that he’d like to see "a little bit more distribution of other types of product categories." The top-selling gluten-free categories break down as follows: Crackers ($156m), salty snacks ($125m), bread and rolls ($120m), pasta ($78m), cookies ($60m), baking mixes ($55m), RTE cereal ($49m), ancient grains ($47m), snack bars ($45m), flour ($43m), and frozen pizza ($35m). Currently, market research company Mintel reckons the US gluten-free retail market topped $10 billion in 2013. This figure includes anything with a gluten-free label, including naturally-gluten-free products. When the category is limited to products specifically formulated to replace wheat and where gluten-free is "not just a minor claim among a bundle of others," Dr. Sheluga says the market is likely closer to $1.2 billion. 70% of these sales were driven by heavy buyers, who account for just 3.8% of US households. Still, he says that Ardent Mills remains 'pretty bullish' about gluten-free category growth overall. Sheluga points out that almost three-quarters of gluten-free products on the market in 2009 are still available today, whereas 85% of new products disappear from grocery market shelves after just two years. Still, Sheluga notes that the market for actual celiac disease patients is limited, and that we may be reaching a point where we can’t push consumers to eat more gluten-free snack. So, while he notes that there’s likely still plenty of room for the gluten-free food market to grow, he is among a growing chorus to wonder out loud if we reaching a breaking point where we can’t eat any more snacks? The entire webinar may be accessed for a fee at: IFT
  5. Celiac.com 03/04/2009 - Millions of people currently suffer from a potentially deadly condition that can have little or no symptoms, but is easily diagnosed and treated. The condition is called celiac disease, and it is caused by an adverse autoimmune reaction to gliadin (found in wheat gluten), secalin (found in rye gluten), or horedin (found in barley gluten). Because of the broad range of symptoms that celiac disease can present, and the fact that many people will have no symptoms at all, it can often be very difficult for those who do have it to get properly screened for the disease. According to Dr. Alessio Fasano, medical director of the Center forCeliac Research, 2.5 million to 3 million people in the USA have celiac disease—it istwice as common as Crohn’s disease, ulceric colitis and cystic fibrosiscombined—yet, to date, no more than 150,000 of them have beendiagnosed. 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, aphthousstomatitis (canker sores), chronic diarrhea, abdominal bloating, and progressiveweight 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. To help us better appreciate the dramatic changes and developments that have taken place, Celiac.com has put together a list of historical landmarks in the understanding and treatment of celiac disease. A glance at the time line will show that it really has taken centuries just to recognize and diagnose celiac disease, with the greatest strides being made in the last fifty years, and especially in the last decade. A Celiac Disease / Gluten-Free Diet Historical Timeline: 100 A.D.—The first written account of celiac symptoms in western medicine occurs when the Greek Physician, Aretaeus the Cappadocean, known as Galen, describes the characteristic stool, noting that the disease was more common in women than men and that children can also be affected. 1669—The Dutch physician Vincent Ketelaer publishes a book that contains an account of a diarrheal illness in which he notes feces so voluminous that, "several basins or pots scarcely hold these accumulations." 1737—John Bricknell writes of patients who suffer from what he terms the "white flux.” Both Ketelaer and Bricknell were likely describing celiac disease, though that name would not be attached it for another century and a half. 1887—Dr. Samuel Gee ushers in the modern era of celiac disease, when he drew attention to the disorder in a lecture delivered at the Hospital for Sick Children, Great Ormond Street, London. 1888—Dr. Gee publishes his classic paper, "On the Coeliac Affection,” in which he describes aspects of the celiac disease with great accuracy and suggests that, "if the patient can be cured at all, it must be by means of diet.” He experimented with various diets and noted that children who were fed a quart of the best Dutch mussels daily, throve splendidly, but relapsed when the season for mussels ended. 1889—R.A. Gibbons, MD., M.R.C.P. publishes The Celiac Affection in Children in the Edinburgh Medical. Journal. 1908—British Physician Christian Herter becomes the first to discover that celiac disease can cause stunted growth, especially among children in their middle years. 1921—British Physician John Howland devises the healthy, three-stage diet for celiac patients known as the milk/protein diet. 1932—Danish physician Thorwald Thaysen provides the first clinical explanation of celiac disease in adults, though he lacks detailed knowledge on intestinal pathology for a full understanding of the disease. 1936—Dutch pediatrician Willem Karel Dicke isolates cereal grains as the factor in aggravating the symptoms of celiac disease, especially in children, and begins treating children with the gluten-free diet. Afterwards his Ph.D. thesis was published and he was laughed out of the NYC gastroenterology meeting in 1950 and vowed not to return to the USA. 1954—Experimenting with surgical biopsy material, Doctor J. W. Paulley makes the first discovery of the intestinal lesions caused by celiac disease in patients. 1955—Margo Shiner invents the tiny biopsy tube that is still used today for confirming the presence of celiac disease in the small intestines. The important celiac disease discoveries of Paulley and Shiner meant that, from the mid 1950s onwards, doctors had a means by which to reliably diagnose the disease. Their discoveries gave rise to an explosion in the understanding of celiac disease that continues to this day. 1965—Dermatologists recognize that people suffering from the itchy skin rash, dermatitis herpetiformis, have an abnormal jejunal biopsy just like those with celiac disease and that the rash usually subsides with the observance of a gluten-free diet. 1970—In the early 1970s, researchers identify genetic markers for celiac disease. Even though the gene or genes that cause celiac disease have not been identified, researchers remain hopeful that they will succeed in doing so, and thereby give rise to a new generation of celiac treatments that do not require a gluten-free diet. 1980s—Fiber optic technology enables doctors to take small bowel biopsies using fiber-optic endoscopes, while the development of reliable screening blood tests greatly increases the number of celiac diagnosis. 1981—The Codex Alimentarius Commission establishes the earliest standards for gluten-free food. Under this original standard, foods labeled “gluten-free” must be made from naturally gluten-free grains, such as corn or rice or from gluten grains (wheat, barley, rye) that had been rendered gluten free through processing. At the time, there was no way to test for the presence of gluten, so tests gauged the levels of gluten by measuring nitrogen levels, an imprecise method. ~1985—It is discovered that gliadin initiate damage to the absorptive epithelium of the small intestine toproduce symptoms of celiac disease in susceptible individuals. 1990s—Early in the decade, doctors thought celiac disease to be rare and affect just 40,000 or so Americans. Over the last decade or so, the number of Americans diagnosed with celiac disease has nearly tripled, to 110,000, but that’s just the start. The National Institutes of Health now estimates that about 1% of the population, or about 3 million people suffer from celiac disease, and that only about 3% of existing cases have been diagnosed. A full 97% of celiac cases remain undiagnosed. That’s about 2.9 million people who remain undiagnosed and in danger. More and more of those who are diagnosed are reporting no symptoms. 1995—In San Francisco, California, Scott Adams launches the Web site that evolves into Celiac.com, the first website on the Internet dedicated solely to celiac disease. The site quickly evolves into one of the most authoritative, informative, and comprehensive sources for celiac disease and gluten-free diet information. The celiac.com forum is one of the most popular places on the web for people with celiac disease to get answers and share information. 1998—Codex Alimentarius revises its standards for foods labeled ‘gluten-free’ to be made from naturally gluten-free ingredients and contain 20 parts gluten per million, or less, while foods processed to be reduce gluten, such as wheat starch, can have no more than 200 parts per million gluten. 1998—The Gluten-Free Mall (www.GlutenFreeMall.com) launches its "Special Diet Superstore!" to provide home delivery of top quality foods and other products that are free of wheat, rye and barley gluten, soy, dairy, eggs, corn, and other common allergens. The Gluten-Free Mall now sells thousands of gluten-free products including breads, cookies, cakes, pizzas, mixes, full meals, frozen foods, cosmetics, gluten-free guides, books, and more. 1997 to 2007, the number of people under-18 diagnosed with food or digestive allergies rises nearly 20%, and nearly 3 million people young people now suffer from food allergies. About 12 million Americans suffer from a food allergy, according to the American Academy of Allergy, Asthma and Immunology, with nearly 90% of all food allergies arising from reactions to just eight foods: Cow’s milk, eggs, peanuts, tree nuts, shellfish, soy and wheat. Since 2004, food retailers have added nearly 2500 new gluten free products to their shelves. 2000—Scientists at the University of Maryland discover Zonulin, which is a protein that participates in tight junctions between cells of the wall of the digestive tract. 2003—Alessio Fasano, MD, publishes his seminal study in the Archives ofInternal Medicine that indicates that 1 in 133 people in the USA haveceliac disease. 2007—Studies show a high instance of arthritis and osteoporosis in people with celiac disease, and other studies show a high prevalence of celiac disease among people with type-1 diabetes. 2008—A team of researchers works to develop a simple saliva test after concluding that it is possible to accurately measure salivary tTG-Abs; both at initial diagnosis for celiac disease, and also while patients are following a gluten-free diet. 2008—Rates of celiac disease are shown to be 2.5 times higher among elderly people than among the general population. 2009—Canada debuts the home celiac disease test kit as part of its national health care plan. 2009—The company Nexpep is currently preparing for a clinical trial program for a peptide-based therapeutic vaccine, and intends to commence a Phase 1 in the first half of 2009. According to Nexpep, the peptide-based therapeutic vaccine is designed to treat the main problem T-cell epitopes of gluten, and has the potential to treat at about 80% of people with celiac disease and the appropriate genetic background. 2009—Sometime this year the USFDA is expected to adopt long awaited regulations for the use of the term "gluten-free" on USA food labels. The new regulation would require foods with "gluten-free" on their labels to contain less than 20 parts per million of gliadin. Several pharmaceutical companies are currently working on treatments for celiac disease, such as Alvine Pharmaceuticals (enzyme therapy), and Alba Therapeutics is developing a zonulin receptor antagonist called AT-1001, which is currently in phase 2 clinical trials. 2012—All food made in the E.U. with ‘gluten-free’ on its label must contain less than 20 parts per million of gliadin, in accordance with the Codex Alimentarius standards.
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