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Celiac.com 07/15/2023 - Summary of the “Pathogenesis and Epidemiology of Celiac Disease” Clinical Symposium sponsored by the American Gastroenterological Association at the Digestive Disease Week international conference, San Francisco, May 22, 2002. Dr. Thomas T. MacDonald of the University of Southampton (UK) School of Medicine discussed new insights into the pathogenesis of celiac disease and the role that the DQ2 (gene) molecule plays in controlling the T-cells of the small intestinal mucosa to produce the lesion or flat mucosa. He explained that the lesion is created when the T-cell immune response in the gut wall results in changes in the gut shape on a microscopic level from tall villi and short crypts to a flat mucosa with an increase in mucosa thickness. Although it was once believed that the damaged gut would quickly return to its normal shape on a gluten-free diet, Dr. MacDonald stated that the flat mucosa appears to be a stable structure. It may therefore take a celiac patient a long time to get better due to the length of time it takes for the gut to revert back to its normal shape. Dr. MacDonald explained that gliadin peptides associate with DQ2 and DQ8 HLA molecules and put themselves into the grooves so that they are seen by the T-cells. Researchers now believe that Tissue Transglutaminase (tTg) alters the gliadin peptide so that it binds to DQ2. Once bound to the HLA, the altered gliadin peptide controls the T-cell response. Dr. MacDonald also described the case of a woman with cancer who was treated with interferon (IFN). The IFN-alpha used to treat her cancer may have triggered her case of clinical celiac disease. IFN-alpha can stimulate T-cells and a viral infection could activate IFN-alpha. Dr. Alessio Fasano, Co-Director of the University of Maryland Center for Celiac Research, discussed the prevalence of celiac disease on a local and worldwide scale. Dr. Fasano said that in the 1970’s, celiac disease was thought to be limited to the pediatric population, but since 1998 there has been a surge of adult cases. He believes that adult celiac disease in the U.S. has been overlooked due to the fact that adults tend to present more atypical symptoms. Also, pathologists need to be better trained to not overlook the majority of patients with only partial villous atrophy. He believes that in the vast majority of cases a person with celiac disease will not see a gastroenterologist, so other physicians and specialists need to have a heightened awareness of the disease. On a worldwide scale Dr. Fasano stated that the overall prevalence of celiac disease is about 1 in 266, on which he commented: "on a global scale, this is by far the most frequent genetic disease of human kind." Dr. Ciaran Kelly, of the Beth Israel Deaconess Medical Center (Boston), had interesting insights into both celiac disease and refractory sprue. Dr. Kelly explained that his responsibility when seeing a patient with possible refractory sprue is to first confirm that the patient really has celiac disease and that they are adhering to a gluten-free diet. Dr. Kelly explained that some patients would “prefer an iron shot” than have to adhere to the diet. Differences from patient to patient in their sensitivity to gluten can also affect their adherence to the diet. According to Dr. Kelly, in celiac disease the lamina propria lymphocytes are stimulated by gluten to mediate the disease, whereas in refractory sprue, intraepithelial lymphocytes no longer require gluten to cause damage. Essentially "they’re on auto-pilot," but he emphasizes that refractory sprue is a rare disease and doctors should refer patients to knowledgeable and competent dieticians for dietary management. Dr. Kelly said that patients who adhere to a gluten-free diet but do not respond to it should also be evaluated for other disorders that can masquerade as celiac disease, especially if the patient is IgA endomysial antibody (EmA) negative or HLA DQ2 or DQ8 negative. Not every flat mucosa is celiac disease, but could instead be a differential diagnosis such as cow’s milk protein intolerance. Other unusual immunological disorders could also be mistaken for celiac disease. Doctors should consider these if the patient’s IgA EmA or tTg antibody tests were negative at diagnosis. HLA typing should also be considered in this case, after other possibilities have been eliminated and the patient is not responding to a gluten-free diet. If a patient’s HLA DQ2/DQ8 test is negative the likelihood that they have celiac disease is much lower. He advised that antibody blood tests for follow-up were helpful but not to be relied upon. Dr. Kelly also emphasized that patients are being seen more frequently who have subtle manifestations of celiac disease and who were previously diagnosed or misdiagnosed with irritable bowel syndrome and other disorders. Some patients with celiac disease may show improvement in their biopsy and blood test results, but their symptoms may still persist. He emphasized that doctors need to be aware that just because a patient has celiac disease it does not mean that they do not also have another disorder.
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We are trying to put our son into an international high schooling program for the first semester of 2023, but until now, not one of the organizations was able to find a 100% gluten-free homestay family for our 15 year old celiac boy. He is german, going to the swiss college in Curitiba/Brazil, where we are living today. He wants to study in the first half of 2023 in North America in order to improve his english and prepare himself for the International Bachelor Program (IB) which he will join in August 2023. Does anybody knows a program who supports and understands the requirements of a celiac and offers the possibility to study in North America for one semester? Thanks a lot, Holger (Leo´s dad)
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Celiac.com 09/28/2017 - Celiac Disease is a global disease and affects almost 0.7% of the world's population. In India, researchers estimate that celiac disease affects about six to eight million Indians. Rates in the north India community are 1 in 100. In a bid to discuss and explore the best ways to address the challenges faced by patients with celiac disease and the way forward, the 17th International Celiac Disease Symposium (ICDS 2017) was held for the first time in Asia from the 8th to the 10th of September 2017. ICDS offers a platform for researchers, gastroenterologists, clinical scientists, nutritionists, and other relevant industry leaders from across the globe to gather and address common challenges faced by patients living with celiac disease. Highlights of this event included keynote lectures, theme-based symposia, and debates as also sessions reflecting joint interests and needs of scientists, clinicians, nutritionists, and patients. In addition to discussions of treatment and management of celiac disease, ICDS 2017 also addressed ways to increase awareness among health care professionals and the general public about the disease, The conference also offered presentations on team-based management of patients with celiac disease, proper counseling and supervision of patients, training of dietitians in the management of celiac patients, industrial production of reliable and affordable gluten-free food, and food labeling for gluten contents. The symposium was organized by the All India Institute of Medical Sciences (AIIMS) in association with the Indian Society of Gastroenterology (ISG), International Society for the Study of Celiac Disease (ISSCD), and the Asia-Pacific Association of Gastroenterology (APAGE). Read more at biotechin.asia
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Celiac.com 05/17/2013 - After earning the title of Miss Hoboken International in January, and Miss New Jersey International 2013 on March 9, celiac disease sufferer Jenna Drew will compete with young women from across the globe in the Miss International Pageant in Chicago this July. Asked about her opportunity to shine, Drew, 25, who works for Litzky Public Relations in Hoboken, said, “I am so thrilled…You don't get to do something like this every day. It's so exciting.” Drew was diagnosed with celiac disease in 2007, after a blood revealed her mother, who was battling cancer, to be suffering from the disease. Since 2009, she has been working with the National Foundation for Celiac Awareness and speaking publicly about celiac disease. To rise to the top the pageant contest, competitors have to do be fit, glamorous, dance well, have a winning personality, and have strong commitment to community service. Drew seeks to raise awareness about celiac disease, especially about the benefits of giving up gluten. Since cutting gluten from her diet in 2009, most of her symptoms have have vanished. She also has more energy, and suffers fewer migraines, she said. Drew earned her bachelor's degree in advertising from Penn State University, and her MBA in marketing from the Florida Institute of Technology. Drew's latest victory earned her a $500 scholarship to help pay student loans, along with $250 toward an evening gown or cocktail dress for the next pageant. Perhaps most important of all, her victory covers the cost of coaching that will help her to sharpen the interview and public speaking skills that are so crucial to success in pageants, and beyond. And it will provide the opportunity to spread the word on celiac disease at engagements across the state. “Through this platform in New Jersey, I will be able to make connections and make a difference,” Drew told listeners. Drew will next compete in Chicago at the Miss International Pageant on July 22-28. Drew says she looks forward to meeting the other contestants, both from America, and from the around the world. Source: http://www.nj.com/hudson/index.ssf/2013/03/miss_international_hoboken_con.html
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This just in on the gluten-free beer front: Omission Beer took the top two slots to win the honors for best gluten free beer at the 2012 Great International Beer & Cider Competition in Providence, R.I. A total of four hundred seventy (470) beers and ciders from breweries from around the globe competed for top honors. Judges in the blind tasting competition presented first, second and third place awards in 44 categories of ales, lagers and ciders. The judges included eighty-three professional brew meisters, beer industry professionals, and beer journalists, who were given only the style and subcategory of each beer and cider they judged. Omission Lager received the gold medal, and Omission Pale Ale earned silver in the gluten free beer category. Third place went to St. Peters Brewery in Bungay, Suffolk, UK, for their St. Peter’s Dark Sorghum beer. Omission beers use traditional ingredients, including malted barley, that are specially crafted to remove gluten. Omission tests gluten levels in every batch both at the brewery, and at an independent lab, using the R5 Competitive ELISA gluten test to ensure that the beer measures well below the Codex gluten-free standard of 20 ppm or less. The R5 Competitive ELISA is currently the best test for measuring gluten levels in fermented beverages. Omission posts test results for each batch of beer on their website: www.omissiontests.com. In the cider competition, Crispin Cider's Browns Lane took top honors in the English Cider category. Meantime, if all this talk of tasty gluten-free beer and cider is making you hungry, then check out our recent article Gluten-Free Beers and Ciders For the Holiday Season and Beyond.
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On June 2, 2002, hundreds of researchers traveled from all over the world to Paris, France, in order to hear the latest scientific reports on celiac disease research and to present results from their own investigations. Over the course of three days, scientists presented dozens of reports, and displayed over a hundred posters covering all aspects of celiac disease, from laboratory research on the microbiologic aspects of the disease, to quality of life issues in patients who are on the gluten-free diet. There were so many exciting reports presented at the conference, and the following describes the research findings from these new reports concerning the screening and clinical presentation of celiac disease, osteoporosis and osteopathy and neurological conditions. SCREENING ISSUES IN CELIAC DISEASE In order to understand how best to screen populations for celiac disease, it is important to know how celiac disease affects a portion of the population, and how it compares to similar populations in other countries. Mayo Clinic Retrospective Study Dr. Joseph Murray from the Mayo Clinic conducted a retrospective study on the population of people living in Olmsted County, Minnesota. This county has kept medical records on all of its residents for over 100 years. Dr. Murray looked at the medical records to determine which residents were diagnosed with celiac disease from 1950 to 2001. He found 82 cases of celiac disease, with 58 in females and 24 in males. The average age of diagnosis was 45. Pediatric diagnoses of celiac disease during this time period were extremely rare. Dr. Murray found that while the diagnosis rate of dermatitis herpetiformis (DH) remained constant over the 51 year period, the diagnosis rate of celiac disease increased from 0.8 to 9.4 per 100,000 people. He also noted that over time, adults with celiac disease were less likely to present diarrhea and weight loss as symptoms. Encouragingly, he determined that the average life expectancy for a diagnosed celiac in this community was no less than that of the normal population, despite the fact that celiac disease was often diagnosed later in life. What does this mean? The celiac disease diagnosis rate in this county is much lower than the actual incidence rates that have been reported in other studies; however, that rate has greatly increased over the past 51 years. It is also noteworthy that so few children were diagnosed with celiac disease. The analysis highlights interesting and useful information about the presentation of celiac disease in adults, and about the potential life expectancy for people with celiac disease who are diagnosed later in life. United States and Europe Compared Dr. Carlo Catassi of Ancona, Italy is currently a visiting researcher at the University of Maryland Celiac Research Center. He presented an analysis of the similarities and differences between the clinical presentations of celiac disease in the United States and Europe. Dr. Catassi established that the prevalence of celiac disease in the U.S. and Europe are the same and range between 0.5 to 1.0 percent of the general population. The prevalence in at-risk populations is much higher, ranging between 5 and 10 percent, and the prevalence in people with Type 1 Diabetes is approximately 5 percent in both the U.S. and Europe. He found that the typical (symptomatic) cases of celiac disease were less common in the U.S., and that the latent (asymptomatic) cases were much more common. Dr. Catassi stated that these differences could be due to genetic factors (for example, there are more Asians in the United States than in Europe), but are more likely due to environmental factors. He noted that infants born in the U.S. are often breastfed longer than their European counterparts. There is also a lower gluten intake in the first months of life for infants in the U.S. The timing of the introduction of cereals could help explain why many American children have somewhat milder symptoms and a more unusual presentation of the disease. What does this mean? Dr. Catassis analysis underscores the need to better educate physicians in the U.S. so that they learn to see typically atypical signs of celiac disease in children and adults. He also reinforced the importance of breastfeeding as a protective factor for children with a genetic predisposition to celiac disease, which could also improve the outlook for European children in the future. United States Prevalence Research Dr. Alessio Fasano presented a poster which outlined his recent findings that are a follow-up to his now famous 1996 blood screening study. The original study found that 1 in 250 Americans had celiac disease. It was performed using anti-gliadin antibodies (AGA), and when a blood sample tested AGA positive it was confirmed using anti-endomysial (EMA) antibody testing. Now that human tissue transglutaminase (tTG) testing is available, Dr. Fasano and his colleagues wanted to see if the results of their original study would be different using the tTG test. He and his colleagues tested the negative samples in the original study, and found 10 more positives using the tTG test. Two of these samples were confirmed positive when checked using the AGA antibody test. Dr. Fasano concluded that the original (1996) prevalence estimate of 1 in 250 understated the true prevalence rate, which could actually be greater than 1 in 200 Americans. Dr. Michelle Pietzak, a pediatric gastroenterologist at the University of California at Los Angeles, also presented a poster which described the prevalence of celiac disease in Southern California. In a study of 1,094 participants, Dr. Pietzak found that 8% of Hispanics tested positive for celiac disease. The most common symptoms presented by subjects in her study included abdominal pain, diarrhea, constipation, joint pain and chronic fatigue. What does this mean? It is important to understand that the foundation of all U.S. prevalence research on celiac disease began with the blood donor study performed by Dr. Fasano in 1996. His newly revised findings, which have been supported by at least one other major study, show that the prevalence of celiac disease in the U.S. population is much higher than originally believed, and that it could be greater than 1 in 200 people. Additionally, the California study is one of the first to establish a celiac disease prevalence figure for the Hispanic population in the U.S., and if the 8 percent figure is supported by further research it would indicate that celiac disease significantly affects Hispanic Americans. OSTEOPOROSIS AND OSTEOPATHY Dr. Julio Bai of Argentina presented important information on a condition that affects many people with celiac disease, and one that is often overlooked by physicians—osteoporosis or osteopathy (its milder form). Both children and adults with celiac disease can have low bone mineral density, and its method of treatment can have important consequences. Dr. Bai treats adults with bone loss, and has studied the nature of fractures and bone health in adults with celiac disease. In a case-control study of 78 celiac disease patients, Dr. Bai found that symptomatic patients were more likely to experience bone fractures than the normal population. Interestingly, he also found that patients with latent (asymptomatic) celiac disease had lower fracture rates than those with symptoms, and that the rate was equal to that of the normal population. None of the patients, however, experienced a fracture of the more serious type—in the hip, spine or shoulder, and the fractures tended to occur in their arms, legs, hands and feet. The doctor also discussed preliminary evidence which showed that most women with osteopathy and celiac disease who go on a gluten free diet will experience an improvement in bone density, while many men do not. There was, however, no difference found between the fracture rates of men and women. Dr. Bai also found that nutritional and metabolic deficiencies in patients with celiac disease and osteopathy might also contribute to fractures by weakening the muscles that surround essential bones. He added that immunological factors could also enhance or inhibit bone rebuilding, and that there is a bone-specific tissue transglutaminase (tTG) that plays a role in this process. What does this mean? It was certainly good news to hear that most people with low bone density due to celiac disease can reverse the damaging process, and if celiac-related fractures do occur they tend to be of the less serious type. Additionally, it was interesting to learn just how important a role muscle health plays in preventing celiac-related fractures. Osteopathy in Children Dr. Mora, an Italian researcher, presented data on osteopathy in children with celiac disease. His results indicate that a gluten-free diet can improve bone mass, and the effect is maintained even after 10 years. He also added that a gluten-free diet improved the overall bone metabolism of the children, and that the diet alone could cure their osteopathy. Osteopenia and Osteoporosis: Conditions Related to Celiac Disease In a chart prepared by Dr. David Sanders of the United Kingdom, data on 674 patients, 243 with osteoporosis and 431 with osteopenia, were presented. He found 10 cases of celiac disease among a mostly female population that had an average age of 53. In all ten cases, patients either had a history of iron-deficient anemia or gastrointestinal symptoms. He concluded that all patients with osteopenia or osteoporosis and a history of anemia or gastrointestinal symptoms should be screened for celiac disease. What does this mean? Dr. Sanders has identified a subset of people with osteoporosis and osteopenia that should be screened for celiac disease—those who have been anemic or have gastrointestinal symptoms. This helps physicians know when to refer patients for celiac disease screening. NEUROLOGICAL SYMPTOMS Dr. Marios Hadjivassiliou of the United Kingdom presented data on neurological symptoms and gluten sensitivity. In an eight-year study, Dr. Hadjivassiliou screened people who had neurological symptoms of unknown origin using the anti-gliadin antibody (AGA) test. He found that 57 percent of these patients had antibodies present in their blood, compared to 12 percent of healthy controls or 5 percent of patients with a neurological condition of known origin. From this group, he studied 158 patients with gluten sensitivity and neurological conditions of unknown origin (only 33 percent of these patients had any gastrointestinal symptoms). The most common neurological conditions in this group were ataxia, peripheral neuropathies, myopathy, and encephalopathy (very severe headache). Less common were stiff person syndrome, myelopathy and neuromyotonia. He noted that ataxia is not a result of vitamin deficiencies, but is instead an immune-mediated condition. Patients with ataxia have unique antibodies that are not found in patients with celiac disease. Dr. Hadjivassiliou felt that up to 30 percent of idiopathic neuropathies could be gluten-related, and that there is preliminary evidence which indicates that a gluten-free diet is helpful in cases of neuropathy and ataxia. What does this mean? It is interesting to note that Dr. Hadjivassiliou has studied gluten sensitivity and not celiac disease. The test used in this study is not specific enough to identify people who were likely to have celiac disease. However, his finding that the gluten-free diet may be helpful in people with certain types of neuropathy and ataxia opens the door for further research on these conditions in people with celiac disease.
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Celiac.com 07/02/2002 (Summary prepared 06/05/2002) - I'm here at the 10th International Celiac Disease Research Conference, in Paris, and three days of intense meetings and reports have just concluded. I didn't want to wait to share with you some of the most interesting and exciting developments in celiac disease--so I'm in a cyber cafe in Paris sending this e-mail. First of all, many of you know that there are two main types of medical research--work that is done in a laboratory, with test tubes and equipment, and research that is done using human participants, called clinical research. There were many presentations on laboratory research at this meeting, which is a subject that tends to be pretty complicated (for me at least!). Laboratory Research Presentations: Many of the presentations on this area of research were focused on answering the following question, so neatly outlined by Dr. Fasano: How do environmental factors (like gluten) reach the immune system (which is primed by genetic predisposition) to cause a response (the development of disease)? The wall of the intestine is designed to prevent this from happening, he said. There are many theories as to why this occurs. Some theorized that gluten actually penetrates epithelial cells (they are the ones that line the intestine) and come out the other side. Other researchers showed evidence that the bonds between epithelial cells break down and opens a pathway for gluten to enter the intestine. Interestingly, another researcher, Dr. Bana Jabri from Princeton has focused her research on the role of immune killer cells that are activated in celiac disease, and gliadin does not have to be present for them to react and create celiac disease! Several researchers discussed the toxic areas of the gliadin protein, and how they are activated in the presence of immune molecules like IL 15. One interesting but complicated note--in a study of numerous patients (using biopsy samples) all of the intestinal samples recognized different toxic fragments of gluten--meaning that there are dozens of ways that celiac disease can develop at the cellular level. These researchers are studying the earliest events in the body that may lead to celiac disease. It is hoped that if we can better explain the series of events (like a row of dominos that fall, one at a time) we can develop treatments to stop these events and prevent celiac disease. Did you know there was more than one kind of tTG (tissue Transglutaminase)?...I didn't! There is an epidermal transglutaminase that is present in dermatitis herpetiformis...this difference may indicate why people with DH are much more sensitive to gluten than those with celiac disease. Clinical Research and Screening Studies: Dr. Joe Murray presented a retrospective analysis of the incidence of celiac disease in the county that includes Rochester, Minnesota and the Mayo Clinic. In his analysis, which goes back decades, he found that the average age of diagnosis is 45-64, and the incidence of celiac disease was more common in women by 3 to 1. He found that celiac disease was more common in this county than ulcerative colitis and more common than Type1 diabetes. Dr. Carlo Catassi, currently in residence at the Center for Celiac Disease Research in Baltimore but native to Italy, presented an overview of the differences between celiacs in the United States and Europe. Some interesting and not surprising information--Europeans are diagnosed younger as adults (34 years of age) when compared to Americans. In Europe, children are diagnosed on average by the age of 4, while many American children are school-age by the time they reach a diagnosis. Surprisingly, Catassi reported that US celiacs tend to have more diarrhea than their European counterparts. Catassi also reported that Europeans have more atypical forms of celiac disease than Americans. He presented the celiac disease screening prevalence figures for the US: 2,121,212 people are projected to have celiac disease in America. There are 140 unknown celiacs for every diagnosed celiac in the US. Dr. Michele Pietzak, in California, did a prevalence study of at-risk conditions in children and found that 14% of children with iron-deficiency anemia had celiac disease. A group in Salt Lake found that 10% of children with Downs Syndrome had celiac disease, and the Childrens Hospital of Milwaukee found that 7% of children with type 1 diabetes have celiac disease. This is a strong case for screening all children with these conditions. Speaking in reference to children, Dr. Catassi said that weaning practices in the US and other countries are having a bigger role in the development of celiac disease than previously thought. Osteopathy: a South American researcher has looked at the issue of fractures in people with silent celiac disease as compared to people with symptomatic celiac disease. He found that people who had symptomatic celiac disease were more likely to suffer fractures than those with silent celiac disease. In all cases, the fractures were less severe in nature. More confirmation with regard to bone mass deficiency in children-the gluten-free diet alone will repair the deficit, and there is generally no need for other medical interventions. Another area of research concerned gluten-related ataxia (a complicated condition that I dont fully know how to describe, but includes muscle weakness and confusion). Overall, it was reported that 6-10% of celiac patients may develop neurological problems (of which gluten-related ataxia is only one). This is another case where celiacs with ataxia may produce different antibodies (like in DH) which lead to the development of ataxia. Most importantly, ataxia does not develop as a result of a nutrient deficiency. There was a great deal of information presented about autoimmune disorders, and I want to make sure I get it right, so Ill summarize that section more in detail (along with other topics) when I return to the office. However, one interesting item related to children with celiac disease and their risk for developing autoimmune disorders was presented: In a study of 74 children diagnosed with celiac disease before the age of 5, Italian researchers found that after 10 years, their risk of developing autoimmune disorders was no greater than that of the general population. Yet another reason for early intervention! Another important area of research presented was in the area of refractory sprue and the development of lymphomas. Im also going to give this area a bit more thought before I post anything, but I will reassure everyone that the risk of lymphomas is very rare. One more thing: I apologize for the incompleteness of my e-mail if any researcher or physician finds that I have not best described their work--I'm summarizing my notes after a very long three days of meetings and my brain cells may be a bit dysfunctional. I will clarify any information and send abstracts to anyone who would like them, just send me your snail mail address. Au Revoir!
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Dr. Lionel Fry from the U.K. talked about DH. He stated that all patients with DH have some degree of enteropathy, even though less than 1 in 10 patients with DH have GI symptoms. Dr. Fry also said 40 percent of DH relatives have gluten-sensitive enteropathy. He went on to say that the gluten-free diet can take 6 months to two years to get healing of DH, and a relapse of the DH rash may take 2 to 12 weeks to occur after someone eats gluten. Total disappearance of IGA skin deposits may take up to 7 years after a gluten-free diet is started. Dr. Reunala from Finland talked about associated diseases. He quoted others who said 5 to 14 percent of DH patients have thyroid disease and went on to say that DH patients have an increased incidence of lymphoma but a gluten-free diet seems to protect against lymphoma.
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