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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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Celiac.com 07/16/2022 - It is well known within the celiac community that health professionals, especially physicians and dietitians are relatively uniformed about celiac disease, including the incidence, presentations, diagnostic testing and management. As a result, many people go undiagnosed and/or misdiagnosed. A significant number also develop complications such as osteoporosis, other autoimmune disorders or lymphoma. To address these issues, the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) and the Office of Medical Applications of Research (OMAR) of the National Institute of Health (NIH) sponsored a consensus conference to examine and assess the current scientific knowledge regarding celiac disease. Dr. Stephen James, Director, Division of Digestive Disease and Nutrition, NIDDK and 25 medical, government and other experts including Dr. Alessio Fasano, Dr. C. Kelly, Dr. Joseph Murray and Elaine Monarch (Celiac Disease Foundation) were members of the planning committee for the Consensus Conference on Celiac Disease which was held June 28-30 in Bethesda, MD. The conference addressed six key areas: How is celiac disease diagnosed? How prevalent is celiac disease? What are the manifestations and long-term consequences of celiac disease? Who should be tested for celiac disease? What is the management of celiac disease? What are the recommendations for future research on celiac disease and related conditions? Invited speakers included celiac experts (17 physicians and two dietitians) from the United States, Canada, England and Finland. Each speaker was assigned a specific topic to present for 20 minutes followed by a short question period from the audience and a 13 member independent panel. The panel consisted of practitioners and researchers in gastroenterology, pediatrics, pathology, internal medicine, endocrinology, a dietitian, a geneticist, and a consumer representative. After reviewing all the scientific evidence and speaker presentations, the panel prepared a consensus statement answering the six key questions. On the third day of the conference the draft statement was presented to the audience and speakers, who then had an opportunity to provide comments and ask questions. Further revisions were made and several hours later the final document was read during a press conference. The final document, speakers’ abstracts, an extensive bibliography and the three day video presentations are all available at http://consensus.nih.gov/ cons/118/118cdc_intro.htm. A Speaker’s Perspective I was very honored to be one of the speakers at this historic conference. The challenge we faced as speakers was to condense a large volume of information and present this to the panel in only 20 minutes. For those who know me and have heard me speak, you would understand I was up to that challenge! Nevertheless it was a pressure-packed experience speaking in front of a prestigious panel, a large audience watching in person, and on the video web cast around the world. As our presentations could have a major impact on the panels’ final recommendations, it was crucial we conveyed the most current and relevant information—not only in the oral presentation—but also in a written submission that is to be included in the abstract and in an in-depth article that will be compiled in a special supplement on celiac disease in a major gastroenterology journal in the near future. Stay tuned for further details. In addition to the formal presentations the speakers and many of the people in the celiac community made, those who attended this conference also had opportunities to network and share ideas, which was extremely valuable. Discussions about effective ways to disseminate all the excellent information from this conference to health professionals, people with celiac disease and the media was a common topic. The management of celiac disease and organizational structure of celiac organizations in other countries and the issue of oats were also discussed. As I reflect back on this event, along with the work of the American Celiac Task Force, I’m amazed and very encouraged to see what can be accomplished when government, health professionals, members of the celiac community and others join together for common goals—greater awareness, earlier diagnosis and better management of celiac disease. The Canadian Celiac Association’s motto is “Together We’re Better” and I believe we must continue to work together in order to be effective and reach that goal!
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A Celiac’s Perspective of the International Celiac Symposium
Jane Trevett posted an article in Spring 2007 Issue
Celiac.com 08/07/2021 - The following is a summary of the 2007 International Celiac Symposium February 20, 2007—Meeting Dr. Michael Marsh The XII International Celiac Disease Symposium was held on November 9th through 11th, 2006, at the Hilton Hotel in New York City. International Celiac Disease Symposiums have been held every two years throughout the world. I was thrilled to be able to attend this Symposium because it was in New York. The Celiac Symposium was separated into two categories for this event. Physicians attended one forum and celiacs and dietitians attended a separate Clinical Forum, however, many physicians also presented material at the Clinical Forum. The highlight of the Symposium, for me was meeting Dr. Michael Marsh—quite by accident. Who is Dr. Marsh? He wrote the only textbook for gastroenterologists on Celiac Disease in 1992 and updated it in 2000 and he is constantly being quoted in celiac literature. When a celiac patient’s biopsy is taken for the diagnosis of celiac disease, the category of markers used to evaluate that biopsy are called the Marsh scale, named after this great man! The Marsh scale describes the amount of gut damage seen on a biopsy as Marsh I, Marsh II, Marsh III, etc. These markers have been used since the eighties! Dr. Michael Marsh was a gastrointestinal researcher from the University of Manchester when he wrote the first textbook on celiac disease. He has since retired to study Neurobiology at Oxford. He is clearly one of the nicest people I have ever met. I met him quite by accident because the Hilton was very crowded with never enough tables, so I crashed a table of all men so that I could have a seat to eat my lunch. I found out one person at the table was Dr. Michael Marsh! I asked him how he felt about all the research going on for a cure for celiac disease. He said, “we have a cure for celiac—the gluten-free diet”. Dr. Marsh was given an award at the Symposium by his fellow peers, which is testimony to the contributions they feel that the man has made in providing the level of understanding that was needed to make a true diagnosis of celiac. Dr. Chaitan Khosla from Stanford was Impressive Dr. Chaitan Khosla from Stanford made a very impressive presentation. In the past, most research on celiac disease has been done by gastroenterologists—Dr. Alessio Fasano, Director of Research from University of Maryland, Dr. Peter Green, Director of Columbia Celiac Research Center, etc. However, Dr. Khosla is a Professor of Chemistry in Biochemistry at Stanford and clearly a scientist. He became motivated to become involved in celiac research because his wife and one of his children are diagnosed celiacs. I am very optimistic when celiac research is attracting those with such a variety of medical backgrounds, and I feel it can only help to lend new understanding to one of the most frequently undiagnosed diseases in medicine today. There was much discussion about which country was making the most progress in raising money for celiac research. I was impressed that the Swedish government recently gave $8.5 million toward celiac research. However, Sweden is a country with socialized medicine and a much smaller country than the U.S. It also has one of the highest ratios of celiacs. I was most impressed when Dr. Khosla became rather irritated by the many comments relating to which country had the most funding. He announced, “Science is not owned by any one country—it belongs to the world! We need the best scientists in the world to work on celiac disease research!” I will never forget that impressive statement! Dietitians/Nutritionists Discuss the Gluten-Free Diet Tricia Thompson, MS, RD, USA, discussed “The Gluten-Free Diet” Carol Semrad, Gastroenterologist and Nutritionist from University of Chicago discussed “Determining Safe Amount of Gluten” Ann Lee, MSEd, RD, CDN from Columbia Celiac Disease Center discussed “What are Safe Grains?” Melinda Dennis, MS, RD, LDN from Beth Israel Deaconess Medical Center discussed “Gluten Contents of Medications/Supplements: A cause for concern?” These four are recognized as some of the most respected nutritionists in the country. Tricia Thompson, author of the American Dietetic Association’s booklet, “Celiac Nutrition Guide” said, “There is no worldwide agreement on the gluten-free diet. In some places, like the U.K. wheat starch where the gluten has been removed is fully acceptable, whereas in the USA we still have zero tolerance for wheat starch.” Ann Lee stated that there is no requirement that gluten-free grains be fortified. There was much concern amongst these professionals about celiacs consuming recommended amounts of fiber, iron, calcium and grain foods. They encouraged celiacs to try the many alternative grains such as amaranth, buckwheat, millet, quinoa, teff and wild rice that provide greater nutrition for celiacs. Melinda Dennis stated that over-the-counter and prescription medications do not have to disclose allergens. Many over-the-counter drugs contain gluten and must be researched. We should check for gluten in nasal sprays, inhalants and eye-drops. Carol Semrad says the gluten-free Labeling Law will go into effect in 2008, which will determine the proposed amounts allowable for a manufacturer to label products “gluten-free. Between now and 2008 there will be much discussion about this topic. One of the most rewarding feelings I had at the Symposium was in meeting so many dietitians who were sent to the Symposium by their gastroenterologists so they could return to their communities and update others on the many dimensions of celiac disease and the gluten-free diet! One gastroenterologist from North Carolina not only attended himself, but paid the expenses for his whole staff including a nurse, a nurse practitioner and a dietitian to educate them about celiac. Many gastros from all over the country financed the cost of the seminar and travel expenses for their dietitians—a wonderful trend that I hope “spreads.” I met so many dietitians whose expenses were being funded by their gastroenterologists that I was clearly impressed. However, I did not meet any dietitians from Connecticut whose expenses were being paid. Contributions Made by Connecticut People When I heard Dr. Khosla speak, it reminded me of the fact that Connecticut’s own Dr. Ted Mahalias, dentist from Waterford got involved in celiac research because he also had a wife and daughter with celiac and noticed dental enamel defects in their teeth. It is exciting that now his study is being conducted through the Columbia Celiac Research Center. Dr. Ted Mahalias spoke at the Symposium and discussed, “Dental Enamel Defects—Another piece of the puzzle.” Can dentists help diagnose celiac disease? Another Connecticut resident, Rory Jones from New Canaan was extremely busy selling the recent book she co-authored with Dr. Peter Green, Director of Columbia Celiac Research Center. The name of the book is Celiac Disease: A Hidden Epidemic. The book has made giant strides in creating celiac awareness throughout the country and is the only book written by a celiac expert and his patient! Rory had gone for years without a true diagnosis of DH until Dr. Green initiated his celiac research at Columbia by asking local endocrinologists to send him their “worst case scenario” of blood tests that were misleading to them. Because of that effort, Rory was finally referred to Dr. Green and diagnosed after many years of pure frustration! Rory, a medical writer was able to convince Dr. Green that they could write a book together on celiac so that others would not have to suffer needlessly as she did. The book has been warmly received by celiacs, physicians and dietitians throughout the country! Many speakers stressed the need to develop awareness programs among primary care physicians and pediatricians. I have spearheaded that effort personally by giving all of my doctors a copy of the book, Celiac Disease: A Hidden Epidemic and I encourage others to do the same. We live in an age of specialists and celiac is a “multi-system” disease. The more your doctors know about celiac, the healthier you will be. The book has been welcomed by all of my doctors. Celiac medical experts are making serious efforts to create celiac awareness among physicians by writing articles for medical journals. Celiacs themselves can create celiac awareness by joining a celiac support group and participating in Walkathons to help fund celiac research or by “spreading the word” in their own communities by giving their doctors current books on celiac. Celiac awareness can be accomplished from the top down or the bottom up! Because celiac is genetic, the people you might be helping could be one of your own relatives! Celiac International Society Being Formed The Celiac International Symposium has been held every two years throughout the country on even numbered years for many years. Much progress has been made in celiac research, understanding the disease as a “multi-system” disease and helping to get more cases of celiac disease diagnosed with the best possible diagnostic tools. Many people feel that meeting more frequently would keep up the enthusiasm that was felt at the Symposium and hasten the progress that is being made in all aspects of celiac research! Immediately after the Symposium, Dr. Peter Green, Director of Columbia Research Center announced that he was forming the first Celiac International Society which would meet in the US on odd numbered years and therefore creating a forum so that researchers could meet yearly. This is exciting news for the celiac community and we applaud Dr. Green’s efforts! No decision as to where the International Celiac Society in the U.S. will meet, but this gesture is clearly a giant step in promoting celiac research throughout the world and keeping up the steady pace of creating “celiac awareness.” which is so sorely needed. We encourage you to help create celiac awareness in your own community. Join a support group! Support Walkathons to raise money for celiac research! Get involved! Together we can “make a difference”.-
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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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The following report comes to us from The Sprue-Nik Press, which is published by the Tri-County Celiac Sprue Support Group, a chapter of CSA/USA, Inc. serving southeastern Michigan (Volume 7, Number 5 July/August 1998 Dermatitis Herpetiformis). Dr. Kim Alexander Papp is a consultant at St. Marys, Grand River, and Listowel Memorial Hospitals. He is also President of Probity Medical Research Inc. The first mention of Dermatitis Herpetiformis (DH) in the literature was in 1884 in Dhring. The connection to wheat was made in Dreke, Holland in 1941. It is an uncommon, but not rare, disease that affects males twice as often as females. It is found in 10% of first degree relatives. There is a genetic association; 90% of DH patients have HLA-B8 vs. only 15% of the general population. HLA-DRw4 and HLA-DQw2 are also associated with some DH patients. DH normally is found on elbows, knees, shoulders, buttocks, sacrum, posterior scalp, and face. While it is unusual, it can also show upon the hands or inside the mouth. It presents as clear blisters that itch very badly. [One patient described the itch ...like rolling in poison ivy naked with a severe sunburn, then wrapping yourself in a wool blanket filled with ants and fleas.-ed] The original diagnosis of DH was done by giving Dapsone, a leprosy drug, and noting any improvement. Today, the gold standard for diagnosing DH is a skin biopsy with immunofluorescence. (A plain skin biopsy is not sufficient.) Most DH patients also have villi damage in the small intestine and lymphocyte infiltration of the intestinal wall, and IgA/IgG antigliadin antibodies in the bloodstream. However, there is really no need to perform a small bowel biopsy or test for blood serum antibodies; the skin biopsy with immunofluorescence provides a definitive diagnosis. Dr. Papp indicated that about half of his patients are diagnosed after having their symptoms recognized and pointed out to them by other DH patients. DH is not an allergic reaction; a different mechanism is involved. It is caused by antibodies to the gluten found in wheat, rye, and barley. The causes of DH flares include large quantities of iodides (some iodine is needed in the diet), kelp, shellfish, non-steroidal anti-inflammatory agents (such as aspirin), gluten, stress, and some cleansers. What else looks like DH? DH can be misdiagnosed as psoriasis, or the patient may have both conditions. Linear IgA disease--the immunofluorescence pattern is different, but it looks and feels the same as DH to the patient. Allergic contact reactions. DH is treated by adherence to a gluten-free (gluten-free) diet. The skin lesions can be treated with either a sulfone (Dapsone) or sulfonamide(Sulfapyradine) drug. In about 85% of the cases, at least a year on a strict gluten-free diet is needed before DH is resolved. In rare cases DH lesions clear up after only a few weeks on the gluten-free diet. Dapsone can have side effects, though these are not common. It can alter blood chemistry, causing anemia. Those of Mediterranean or African ancestry can have sudden red blood cell count drops [known asG6PD Deficiency--Dr. Alexander]. Other complications include tingling fingers and neurological problems. Ideally, if the patient is on medication there would be monthly lab tests to monitor the dosage and effect on the patient. This almost never happens. The gluten-free diet takes a long time to bring DH under control because it requires time to clear the IgA and IgG from the blood. So even if one is on a gluten-free diet and/or taking Dapsone, technically one has DH. Like an alcoholic, one always has the disease. Dr. Papp concluded his presentation by answering a few questions from the audience: Q: How soon after ingesting gluten or iodine will a flare occur? A: It varies tremendously. With iodine, it usually takes several days of consumption before a flare occurs. Q: What effect does stress have on a DH patient? A: It intensifies any symptoms the patient is experiencing. Q: What effect does iodine on the skin have? A: It really has no effect; it doesnt penetrate enough. Iodine must be consumed to cause a DH flare. Q: After several years on a gluten-free diet with no flares, is iodine still a problem? A: No.
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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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From an oral report by Dr. Murray; transcribed for the list by Ann Whelan, editor of the bi-monthly newsletter Gluten-Free Living. To subscribe, write to P.O. Box 105, Hastings-on-Hudson, NY 10706. Dr. Joseph Murray, one of the leading USA physicians in the diagnosis of celiac disease (celiac disease) and dermatitis herpetiformis (DH). Dr. Murray (murray.joseph@mayo.edu) of the Mayo Clinic Rochester, MN, is a gastroenterologist who specializes in treating Celiac disease: THE DAILY REPORT: The big story today from Finland is oats. There were two talks and several posters presented about the topic. In the first talk, Dr. Risto Julkunen spoke about the Finnish five-year follow-up study in which oats were given to a population of well-controlled celiacs. They ingested an average of 34 grams, which is slightly over one ounce, daily for up to five years. The oats used in the study were specially grown and tested to be free of wheat, barley and rye. The researchers claim there was no difference in those allowed the oats and those who were not. There was a second study presented from Dublin, and reported by Dr. Conleth Feighery. This 12-week study looked at a small group of patients with healed celiac disease to start with, who were given 50 grams of oats a day. Again, the oats were carefully screened and tested to make sure there was no contamination. After 12 weeks, no effect was seen on biopsy or through antibody tests. The researchers also took 2 of the 12 participants and did what they called a micro challenge of 500 milligrams of gluten a day. Both patients got reactions, so the researchers felt that at least two of the participants were sensitive celiacs -- and they still did not respond to the oats. A poster from Italy showed biopsies taken from celiacs that had been studied in the culture plate in the presence of oats, which did show some effect on the biopsies. In other words, tissue from biopsies from patients with treated celiac disease were put in a plate and grown in the presence of oat protein, and the oat protein had an effect on the biopsies. This sounded odd, so I made sure Id really understood what Joe reported and paraphrased: In other words, theyre seeing no reaction from oats within the body in some studies but this one showed a reaction outside the body? Yes, Joe said, this of course is puzzling. Continuing on the oats issue, a series of short studies from several places also showed what the Finns had shown in the body, i.e., no problem in the short term. This is Joes summary on Oats: Over the short term, in well-controlled, healed celiacs who are compliant in every other way, it may be safe for them to take oats that have been tested to be free of contamination of other grains. He also mentioned that there were a few studies showing that contamination of commercial oats may be common in several European countries. (NOTE: I went to Digestive Disease Week in May, where I met several Irish doctors who have studied oats. I would describe their strong beliefs about oats as very adamant. They are adamant in believing that uncontaminated oats are safe for people with Celiac Disease. If all of this oats talk pans out as being acceptably correct to gluten-sensitive individuals in this country, that would seem to be pretty good news. Then, the next big challenge would be to figure out how gluten-sensitive people are going to get access to contamination-free oats. I, for one, will be all ears.).
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Dr. Kelly, who is a refractory sprue specialist, had interesting insights into Celiac Disease. He first described once having a patient say to him that eating at a restaurant or food take out is the gastronomic equivalent of promiscuous and unprotected sex because (you) dont know where food has been, who else its been with, and what you might get from it. Dr. Kelly explained that his job when seeing a patient with possible Refractory Sprue is to first confirm that the patient really has Celiac Disease and is adhering to a gluten-free (gluten-free) diet. He explained that some patients would rather prefer an iron shot than adhere to a gluten-free diet and that sensitivities vary which removes another drive to say gluten-free; however, if symptomatic, he has found that the patient has the motivation to adhere. Hes even had to recruit and train dieticians to take an interest in Celiac Disease. He said that Celiac Disease or Gluten Sensitive Enteropathy is driven by activated lamina propria T-cells to whom gliadin is being presented through their T-cell receptors. In Refractory Sprue, he said that the cells are evident at intraepithelial lymphocytes rather than lamina propria lymphocytes and they no longer require gluten in order to be driven. So, theyre on auto-pilot. He emphasized that this is a rare disease and advised that doctors get a competent dietician to help patient adhere to diet. If the concern is that the patient is adhering but is not responding, Dr. Kelly advised doctors to think of other disorders masquerading as Celiac Disease, especially if patient is IgA, EmA (anti-endomysial) negative or if not HLA DQ2 or DQ8 (common Celiac genes) positive. He added that not every flat mucosa consistent with Celiac Sprue is Gluten Sensitive Enteropathy but that there can be a differential diagnosis such as cow protein intolerance. He said that there are unusual immunologic disorders that can be mistaken for sprue or refractory sprue. He said that doctors should consider these if the patient was not IgA endomysial or human tTg (transglutaminase) antibody positive at diagnosis. He explained that the positive predictive value of those tests are so strong that really its in some ways has a higher positive predictive value than even biopsy that you dont get very, very if any false positives at least by the immunofluorescence assay. So, if theyre negative at diagnosis considering other possibilities and this is one instance where HLA typing actually may be clinically useful if you have a patient you think has Celiac Sprue but isnt behaving or responding as you would expect with a gluten free diet and you ask do they really have Sprue. If they are HLA DQ2/DQ8 negative, then the likelihood of them having gluten sensitive disease is much, much lower. He said that serology (blood tests) were helpful but not be relied upon. He said that IG antibody levels against gliadin, or tissue transglutaminase tend to drop fairly quickly usually within 2 to 3 months provided they (patient) were positive to begin with. ...The IgG takes much longer so it tends to be less useful and of course, if they are IgA deficient, they wont be IgA positive to begin with and you cant use then. Even if their antibody levels are high to begin with, and remain high, that to me means that theyre still exposed to the antigen and they still have T-cells. Their lamina propia T-cells are still being driven by the antigen. But if theyre negative, Im afraid that its not particularly sensitive and low levels of gluten exposure may result in symptoms and poor response would not necessarily be identifiable by antibody.... Dr. Kelly said that patients with subtle manifestations of Celiac Sprue who have been previously diagnosed with irritable bowel or host of other disorders are now being more frequently seen. He said that there has been a lot of discussion in the past year about Celiac Sprue being misdiagnosed as Irritable Bowel Syndrome. Dr. Kelly also described the circumstance that patients with Celiac Sprue show improvement both serologically (blood) and histologically (biopsy) but their symptoms persist. He said that doctors need to be aware that just because a patient has gluten sensitive enteropathy doesnt mean they cant get another gastrointestinal disorder. He gave examples such as microscopic colitis and what he called a classical association, hyperthyroidism, or something else which could also cause diarrhea and weight loss. Dr. MacDonald, a celiac specialist, discussed new insights into the pathogenesis of Celiac Disease. Dr. MacDonald discussed primarily the role that other factors besides the DQ2 (gene) molecule, control the T-cells in the gut mucosa which produce the lesion or flat mucosa. In the genesis of the lesion, he explained how the T-cell immune response in the gut wall results in a gut shape of tall villi and short crypts which results in an increase in mucosa volume with flat mucosa and an increase in mucosa thickness. My husband, a PhD immunologist, interpreted this for me; He said that imagine the villi are the hill and the crypts are the valley. The valley is where things grow. The oldest cells are at the tip of the hill and as cells mature, they get transported up the hill. As damage occurs, the hill gets chopped down, valleys get deeper making more area for cells to replicate. Dr. MacDonald assumed that because the epithelium is turning over so fast in Celiac Disease that the lamina propria, the shape of the gut itself would be turning over, but actually the data says otherwise. The flat mucosa isnt turning over at all, ... a rather stable shape, its not really dynamic, its remodeled. He said that putting Celiacs on a gluten free diet may take them a long time to get better, because it takes a long time for this to go back because this is actually stable, its remodeled.... Dr. MacDonald explained that gliadin peptides associate with DQ2 and DQ8 molecules putting themselves into the grooves to be seen by T cells. However, he gave an instance where a particular gliadin peptide doesnt fit well into the pockets of DQ2 to be seen by T cells. Tissue Transglutaminase or Ttg deamidates (removes chemical groups on certain amino acids and allows peptide to bind to DQ2) this peptide in terms of glutamine into glutamic acid, gives a negative charge, fits very well into pocket, and binding increases 100 fold. Tightness of the binding ... controls the specificity and strength of the T-cell response. Dr. MacDonald also described the case of a woman with cancer who was treated with interferon. He said that she had the endomysial antibodies, was DQ2 positive, and had Celiac Disease; however, he cited that the reason why the Celiac Disease was not found earlier was that interferon alpha/gamma used to treat the cancer may have precipitated clinical Celiac Disease. He added that her son was later diagnosed with Celiac Disease as well. It was also eluded to that a viral infection like a gastrointestinal flu would stimulate or produce interferon alpha. Dr. Alessio Fasano from the Center for Celiac Research at the Univ. of Maryland also explained that its not just the gluten antigen and genes (i.e., HLA DQ2 or DQ8) but an added element like that alluded to by Dr. MacDonald such as a viral infection which can result in Celiac Disease. Dr. Fasano described a study performed on North African children who were thought to have symptoms resembling infectious disease with symptoms like anemia and diarrhea were found to have Celiac Disease at the rate of 1 in 18. He said because they have a high consumption of grains and seem to carry a high frequency of the genetic elements, he felt that non-profit organizations may intervene to help institute a gluten-free diet in this Celiac population. Dr. Fasano mentioned a study performed in Southern California which found Celiac Disease in 2 to 4% of people with symptoms or associated diseases and 5% in family members of Celiacs. Dr. Fasano stated that the overall prevalence is 1 in 266 which he said on a global scale, by far this is the most frequently genetic disease of human kind. Fasano said that in the 1970s, it was thought Celiac Disease was confined to the pediatric population but that since 1998 there has been a surge in adult versus child cases. He believes that the disease may have been overlooked in adults because adults have more atypical symptoms like anemia, osteoporosis, abortion that would NOT see a Gastroenterologist but would see an internist, reproductive OBGyn, endocrinologist, etc. Dr. Fasano said that if the iceberg idea is diarrhea, weight loss, abdominal symptoms, you will surely crash into the iceberg, but he proposed, what about the people who have joint pain, constipation, fatigue, and so on. He said that if you are willing to see the monument of the problems, you have to get down under the water because in the vast majority of cases, Celiacs will not see a Gastroenterologist and that doctors must be aware of those under the water. Dr. Fasano during the question and answer session listened to a doctor in the audience describe a patient with diarrhea and schizophrenia whose diarrhea and schizophrenia resolved when put on a gluten-free diet. The doctor didnt know what to do with the patient but explained that the patients background, being of Irish descent, gave him a red flag into the possibility of Celiac Disease. Dr. Fasano in response described how there can be a change in behavior such as attention deficit disorder, depression, and schizophrenia. He described a theory that the epitopes of gluten could cross the intestinal barrier, cut into the bloodstream, and cross the blood brain barrier. He believes that there is a clear association between Celiac Disease and change in behavior.
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