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Celiac.com 02/27/2007 - Celiac disease is an inherited autoimmune enteropathy caused by an adverse reaction to gluten in people who are genetically susceptible. Symptomatic celiac disease usually occurs in children and adolescents, who generally present gastrointestinal and other symptoms including: Abdominal cramps; gas and bloating; diarrhea; fatigue or general weakness; foul-smelling or grayish stools that are often fatty or oily; Osteoporosis; stunted growth in children; weight loss. Celiac disease can also occur in asymptomatic individuals who have associated conditions. Recent studies show the prevalence of celiac in children under 15 years in the general population is 3 to 13 per 1,000 children, or approximately 1:300 to 1:80 children. A figure of 1 in 133 people is commonly used as an average for rates of celiac disease in the general population. Diagnosis of Celiac Disease Celiac disease can be challenging to diagnose, because its symptoms are often similar to those of other diseases. Celiac disease is easily taken for other diseases such as Crohns disease, chronic fatigue syndrome, diverticulitis, various intestinal infections, irritable bowel syndrome, iron-deficiency anemia caused by menstrual blood loss. Thus, celiac disease is often misdiagnosed, and generally under-diagnosed. Celiac practice guidelines call for routine screening of anyone with a family history of celiac disease or of disorders such as thyroid disease, anemia of unknown cause, type I diabetes or other immune disorders or Downs syndrome. Otherwise, patients are generally screened case by case according to individual symptoms. Likely Signs of Celiac Disease As a general practice, celiac disease should be considered in the earliest stages of differential diagnosis of children with persistent diarrhea, especially with failure to thrive. Celiac disease should also be considered in the differential diagnosis of children with persistent GI symptoms, including recurrent abdominal pain, constipation and vomiting, and any other GI issues commonly associated with celiac disease. Testing is recommended for children with celiac-associated non-gastrointestinal symptoms, such as delayed puberty, dental enamel hypoplasia of permanent teeth, dermatitis herpetiformis, iron-deficient anemia resistant to oral iron, osteoporosis, and short stature. Testing is also recommended for asymptomatic children whose relatives have celiac, and those who have celiac-associated conditions, such as autoimmune thyroiditis, Down syndrome, selective IgA deficiency, Turner syndrome, type 1 diabetes mellitus, or Williams syndrome. Celiac practice guidelines call for testing asymptomatic children who belong to at-risk groups at around three years of age, as long as they have eaten gluten regularly for at least one year before testing. Therefore, guidelines call for testing asymptomatic individuals with negative serological tests, and who belong to at-risk groups at regular intervals. Treatment guidelines do not presently call for routinely testing autistic children for celiac disease, as there is currently no peer reviewed scientific evidence that celiac disease is more common in autistic children than in the general population (although more research needs to be done in this area because many parents report a vast improvement in their childrens symptoms by eliminating gluten and casein from their diets). Testing for Celiac Disease A blood test, such as anti-tissue transglutaminase and anti-endomysial antibodies, can detect abnormally high antibody levels, and is often used to screen people who are most likely to have the disease, and for those who may need further testing. Based on the current evidence and practical considerations, including accuracy, reliability, and cost, measurement of IgA antibody to human recombinant tissue transglutaminase (TTG) is recommended for initial testing for celiac disease. Although it is nearly as accurate as TTG, measurement of IgA antibody to endomysium (EMA) is observer dependent and therefore more subject to interpretation error and added cost. Because of the inferior accuracy of the antigliadin antibody tests (AGA), the use of AGA IgA and AGA IgG tests is no longer recommended for detecting celiac disease. More than 90% of patients with celiac disease have genetic markers HLA DQalpha *0501, and HLA DQbeta *0201. Negative tests for these markers in conjunction with negative serum antibody tests suggest an absence of celiac disease. However, positive tests for the genetic markers do not necessarily mean that the patient has celiac disease. In conclusion, genetic markers can generally be used as a test to exclude celiac disease as a diagnosis, although there have been reported cases of the disease absent these markers--it is a scenario that is rare. Celiac Disease Biopsy To confirm a diagnosis of celiac disease, your doctor may need to do a biopsy, that is, microscopically examine a small portion of intestinal tissue, looking for celiac associated damage to the small intestine. To do this, your doctor inserts a thin, flexible tube (endoscope) through your mouth, esophagus and stomach into your small intestine and takes a sample of intestinal tissue to look for damage to the villi (tiny, hair-like projections in the walls the small intestine that absorb vitamins, minerals and other nutrients). Practice Guidelines for Treatment of Celiac Disease with an Aggressive Life-long Gluten-free Diet As there is presently no cure for celiac disease, avoiding gluten is crucial. Practice guidelines call for a life-long diet free of gluten as the standard treatment for celiac disease. To manage the disease and prevent complications, its essential that patients avoid all foods that contain gluten. That means it is crucial for the patient to avoid all foods made with wheat, rye, or barley. This includes types of wheat like durum, farina, graham flour, and semolina. Also, bulgur, kamut, kasha, matzo meal, spelt and triticale. Examples of products that commonly contain these include breads, breading, batter, cereals, cooking and baking mixes, pasta, crackers, cookies, cakes, pies and gravies, among others. It is also good practice in treating celiac disease for patients to avoid oats, at least during initial treatment stages, as the effects of oats on celiac patients are not fully understood, and contamination with wheat in processing is common. So, its a good practice when first adopting a gluten-free diet to eliminate oats, at least until symptoms subside, and their reintroduction into the diet can be fairly monitored and evaluated. Another good practice is coaching celiac patients to avoid processed foods that may contain hidden gluten. Wheat flour is commonly used in many processed foods that one might never suspect. A few examples include candy bars, canned soup, canned meat, energy bars, ketchup, ice cream, instant coffee, lunch meat, mustard, pastas, processed meat and sausages. Also, gluten is also commonly found in many vitamins and cosmetics, such as lipstick, and in the production of many capsules and tablets, where wheat starch is a commonly used binding agent. Obviously, patients must avoid beer (most is made using barely, although there are gluten-free beers on the market), though wine, brandy, whiskey and other distilled and non-wheat or non-barley alcohols are okay. Celiac patients are encouraged to eat a diet rich in fish, fresh meats, rice, corn, soybean, potato, poultry, fruits and vegetables. Initially celiac patients should also avoid milk and other dairy products, as it is common for patients with celiac disease to be lactose intolerant. Dairy products can often be slowly reintroduced into the diet over time with successful treatment. It is also important for patients to learn to identify gluten-free foods. Because a gluten-free diet needs to be strictly followed, and because food ingredients may vary from place to place and even over time for a given product, it is important to always read ingredient labels. For lists of gluten-free foods and products, and for specific advice on adopting, shaping and maintaining the gluten-free diet that is right for them, patients may wish to consult a registered dietitian who is experienced in teaching the gluten-free diet, or purchase a commercial gluten-free product listing. Most patients who remove gluten from their diets find that their symptoms improve as inflammation of the small intestine begins to subside, usually within several weeks to several months. Many patients who adopt a gluten-free diet report an improvement within 48 hours. Results of a gluten-free diet can be especially dramatic in children with celiac disease. Not only does their diarrhea and abdominal distress usually subside but, frequently, their behavior and growth rate are often markedly improved. A reappearance of intestinal villi nearly always follows an improvement in symptoms. In younger people, the villi may complete healing and re-growth in several months, while in older people, the process may take as long as two to three years. In cases where nutritional deficiencies are severe, celiac patients may require vitamin and mineral supplements to help bring about a healthier vitamin profile: folic acid and B12 for patients with anemia due to folate or B12 deficiency; vitamin K for patients with an abnormal ProTime; calcium and vitamin D supplements for patients with low blood calcium levels or with osteoporosis. For all such cases, individuals should consult their health professional. Skin lesions common in patients with dermatitis herpetiformis often improve with adherence to a gluten-free diet. The Importance of Follow-up Testing for Celiac Patients on a Gluten-free Diet Research indicates that only half of those patients who have had celiac disease for at least 20 years were following a strict gluten-free diet. Up to 30% of those patients showed evidence of bone loss and iron deficiency. These are but a few of the long-term consequences for celiac patients failing to follow a gluten-free diet. Thus, it is important to conduct follow-up testing of celiac patients to determine the success of their gluten-free diets, and the progress of their treatment, and to make any necessary adjustments to each. Even done properly, with no accidental consumption of gluten, the elimination of gluten antibodies from the blood takes months. To estimate the treatments effectiveness, current guidelines call for a single serological testing after 3-6 months on a gluten-free diet. In addition many doctors recommend an annual serological screening and biopsy to make certain that the disease is properly controlled. For patients who are free of antibodies, and actively following a gluten-free diet, it is wise to consult a doctor if there is any recurrence of celiac-associated symptoms. First degree relatives of celiac patients should have a repeat blood test every 2-3 years. health writer who lives in San Francisco and is a frequent author of articles for Celiac.com.

Celiac.com 12/10/2000 - As reported in Ann Whelans September/October issue of Gluten-Free Living, the American Dietetic Association (ADA) has released the 6th edition of its Manual of Clinical Dietetics, which offers revised guidelines for the treatment of celiac disease. This manual is currently used by hospitals and doctors all over North America, and represents the most up-to-date source of information with regard to the dietary treatment of various illnesses. The new standards set in this publication conform more closely with current international standards. Included on their safe list are items that have been on Celiac.coms safe list for over five years, including: amaranth, buckwheat, distilled vinegar (no matter what its source), distilled alcoholic beverages (including rum, gin, whiskey and vodka), millet, quinoa and teff. A team of American and Canadian dietitians wrote the new gluten-free guidelines, including: Shelley Case, RD, Mavis Molloy, RD, Marion Zarkadas, M.Sc.RD (all from Canada and all members of the Professional Advisory Board of the Canadian Celiac Association), and Cynthia Kupper, CRD, CDE (Executive Director of the Gluten Intolerance Group and celiac). Additional findings of this team regarding buckwheat and quinoa contradict what has been accepted as common knowledge for years by some US support groups, mainly that these two grains are more likely to be contaminated by wheat than other grains. In fact, according to the team, buckwheat and quinoa are far less likely to be contaminated than most other grains. At the most basic level the new guidelines mean that celiacs do not need to avoid foods containing unidentified vinegar or distilled alcohol, this alone will allow much more freedom when shopping or eating out. Further, celiacs who drink alcohol will have much more freedom and a far greater choice when they want to have a drink. Additionally, celiacs will be able to more easily maintain a well-rounded and nutritious diet because they will have access to a far greater number of highly nutritious and safe grains. The ADAs 6th edition of the Manual of Clinical Dietetics represents the first time that Canadian and United States dietary guidelines have come together to create a united North American gluten-free standard, and will hopefully lead to the adoption of a single standard by all US support groups so that hundreds of thousands of celiacs will not have to unnecessarily exclude more foods than necessary. These new guidelines go a long way towards an international standard, which should be the ultimate goal for all celiacs and celiac organizations in the world.

Celiac.com 05/27/2016 - Data from scientific studies meant to help clinicians recommend the best time for the introduction of gluten into an infant's diet have been unclear, and this has led to some confusion among parents as to the best policies for when to introduce gluten. Past advice was based on observational studies, but two clinical trials published in the past two years have shown that the age at which gluten is introduced to the diet does not affect overall rates of celiac disease during childhood. In response to those recent studies, the European Society for Paediatric Gastroenterology, Hepatology and Nutrition (ESPGHAN) has already changed its guidance to recommend that infants be introduced to small amounts of gluten sometime between four and 12 months of age. Meanwhile, Sweden's national food agency, Livsmedelsverket, is reviewing recent scientific studies make sure its current advice regarding gluten introduction matches the best current data. The new research suggested that "it does not matter when during the first four to 12 months food with gluten is introduced," reads a note on the Livsmedelsverket website. "The new research provides important knowledge about what affects the risk of gluten intolerance," said Ylva Sjögren Bolin, the agency's immunologist and nutritionist. These changes could have an impact on the market for baby food, which has seen sales fall recently as more and more parents follow specialized diets for their infant children. In the last few years, more parents have turned to allergen-free foods for their children, which has created a lucrative market for the products, especially in the gluten-free category. Exactly how lucrative? About 14% share of the global market was gluten-free in 2014, according to Euromonitor International. Major markets for gluten-free baby food include Russia, Spain and Italy. Look for that market share to increase, as "more babies and toddlers are used to gluten-free, and mums believe that gluten-free is a better diet for their kids," noted Mintel's Yannick Troalen. Source: foodnavigator.com

Celiac.com 04/18/2014 - Confusion over the labeling of gluten-free beers just got a bit clearer, thanks to new guidelines by the The Alcohol and Tobacco Tax and Trade Bureau (TTB). The new guidelines clarify the use of the term “gluten-free” in labeling for alcohol products. The Bureau announced that it would continue to consider gluten-free claims to be “misleading” if they were used to describe products made from gluten containing grains. Products in which gluten has been removed or reduced to below 20 ppm may be labeled as “processed,” “treated,” or “crafted to remove gluten,” if the claim is made “with a qualifying statement that warns the consumer that the gluten content of the product cannot be determined and that the product may contain gluten,” according to the guidelines. These guidelines are consistent with regulations set forth by the Food and Drug Administration (FDA) in August, which also ruled that alcoholic beverages made from ingredients that do not contain any gluten – such as wines fermented from fruit and spirits distilled from non-grain materials – may continue to be labeled as gluten-free. Craft Brew Alliance (CBA), the Portland, Ore.-based maker of Omission Beer, brewed with traditionally malted ingredients and then treated to reduce the gluten content in the finished product, issued a statement that the “TTB announcement regarding gluten-free labeling does not require changes in the way Omission Beer is labeled, or any other aspect of the production and sale of our beers.” Source: Brewhound.com.

Celiac.com 12/04/2013 - About 1 of of 100 Americans has celiac disease, but most cases remain undiagnosed, partly because of failure on the part of physicians to collect at least four specimens during duodenal biopsy, as per current recommendations. A team of researchers recently set out to determine whether physician and practice characteristics are associated with these failures. The research team included Benjamina Lebwohl, Robert M. Genta, Robert C. Kapel, Daniel Sheehan, Nina S. Lerner, Nina, Peter H. Green, Alfred I. Neugut, and Andrew Rundle. For their study, the team used a large national pathology database to identify all adult patients who underwent duodenal biopsy during 2006–2009. They used hierarchical modeling to determine whether procedure volume, the number of gastroenterologists per endoscopy suite, and the number of gastroenterologists per capita of the zip code of the practice were associated with adherence to recommendations. The team identified 92,580 patients who met their inclusion/exclusion criteria. Patient group was 67% female, averaging 53.5 years of age. The team received biopsy specimens from 669 gastroenterologists from 200 endoscopy suites, located in 191 zip codes, with a mean of 3.4 gastroenterologists per suite. Multivariate analysis showed that higher procedure volume was associated with decreased adherence to specimen recommendations [odds ratio (OR) for each additional 100 procedures, 0.92; 95% confidence interval (CI), 0.88–0.97; P=0.002]. Gastroenterologists employed in suites with higher numbers of gastroenterologists reported higher levels of adherence (OR for each additional gastroenterologist, 1.08; 95% CI, 1.04–1.13; P<0.001) However, that was not the case for a higher gastroenterologist density in the zip code of the practice (OR for each additional gastroenterologist per capita, 1.01; 95% CI, 0.99–1.03; P=0.21). This study suggests that high-volume physicians exhibit lower rates of adherence to biopsy guidelines, possibly because of the additional time required to submit the minimum of four specimens. In contrast, doctors working in endoscopy suites with high numbers of colleagues showed higher rates of adherence, possibly because of peer education. Basically, doctors who do large numbers of biopsies are more likely to submit too few samples for accurate analysis, whereas doctors working in close contact with large numbers of peers are more likely to follow current recommendations, and to produce better, more accurate results. Source: European Journal of Gastroenterology & Hepatology: November 2013 - Volume 25 - Issue 11 - p 1273-1278. doi: 10.1097/MEG.0b013e3283643542

Celiac.com 06/15/2008 - Many people with celiac disease have stories to tell about the about how difficult it can be to get a getting a proper diagnosis. Celiac disease can mimic so many other conditions. Irritable Bowel Syndrome (IBS) is one of those conditions. The symptoms for Irritable Bowel Syndrome and for celiac disease are often similar as a result the diagnosis of celiac disease can be delayed or missed and misdiagnosed as irritable bowel syndrome. In an effort to reduce the misdiagnosis of celiac disease as Irritable Bowel Syndrome, Britain’s National Institute for Health and Clinical Excellence has drawn up new guidelines covering the diagnosis of Irritable Bowel Syndrome. The guidelines call for all diagnosis of Irritable Bowel Syndrome to be preceded by a screen for celiac disease. Keeping this in mind, anyone suffering from Irritable Bowel Syndrome, and who has not been tested for celiac disease, might want to take the initiative and check with their doctor to see if further testing might be in order. Studies show that a minimum of 1 out of every 100 people in Britain suffers from celiac disease, but that only 1 out of 8 is properly diagnosed. More worrisome still is the fact that new research shows that it takes an incredible 13 years on average before the diagnosis are made. That means 13 years of unnecessary pain and discomfort, to say nothing of potential systemic damage for those awaiting a proper diagnosis of celiac disease, including osteoporosis, bowel cancer and increased risk of other autoimmune diseases. Since similar numbers likely prevail in America, it's good to keep an eye on clinical changes like the one recently made in Britain. Again, for people diagnosed with IBS, but who have not been evaluated for celiac disease, it might be good to consider getting checked for celiac disease, even if these changes are not officially implemented in America anytime soon. Changes in diagnostic and treatment practices that benefit people with celiac disease are long overdue and highly welcomed by the celiac community. As our abilities to evaluate diagnostic and treatment practices continue to expand, look for important changes in the clinical approach to celiac disease, greater awareness among the general population, and improvements in the quality of life among celiacs. References: 1. The Economic Burden of Coeliac Disease in the UK research paper 2. Recent advances in Coeliac Disease by D.A. van Heel and J. West, published in Gut 2006 55, pp 1037-1046 3. Coeliac Society of the UK

Celiac.com 08/10/2001 - The Celiac Sprue Association, under the new leadership of Mary Schluckebier, has recently taken an important step towards eliminating the lingering confusion surrounding its position on gluten-free foods. According to Janet Rinehart, the CSAs "Basics for a Celiac Diet" guidelines have recently been revised to include the following key changes: Canola oil is not mentioned (except where you might assume the connection for "general recommendations for those with a depressed immune system)." Rather than stating that quinoa, amaranth and teff are not safe for the celiac diet, the document now says: "Some celiacs have demonstrated toxicity or sensitivities to the following cereals: quinoa, amaranth and teff." Distilled vinegar, however, is still on the CSAs "Low Gluten Items to Avoid List." The CSA still maintains that distilled vinegar and alcohol are "questionable," even if there is no detectable gluten/gliadin in them, and even though the Gluten Intolerance Group (GIG), Celiac Disease Foundation (CDF) and the new guidelines from the American Dietetic Association (ADA) all include them on their safe lists . The CSA urges celiacs to ascertain the source of any questionable ingredients from their manufacturers. The CSAs new version of their "Celiac Disease Self-Management Chart for the Clinical Diet" advocates: A "self-management" approach to the diet, where the first stage is to eliminate anything questionable -conservative approach. Zero gluten is the goal. The second stage is to develop good methods for questioning products and controversial items/information. Then introduce new items, one at a time, at least two weeks apart. The third stage is to maintain a stable diet, using as many tools as possible. There is also a sample Food Diary Chart to use when beginning the zero gluten diet to track your meal planning (be sure to include brand names for reference). According to Janet Rinehart the CSAs new guidelines "are not incompatible with the new ADA recommendations in the later stages." Further: "We can use the CSA diet to start with, and then use the ADA recommendations and those published by GIG/CDF, depending on individual food sensitivities." She urges celiacs and support groups to quite blaming the CSA and instead work together to contribute positively to the success of all celiacs in all groups.