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      Frequently Asked Questions About Celiac Disease   04/24/2018

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What is Celiac Disease and the Gluten-Free Diet? What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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    SUMMARY BY JIM LYLES FROM THE SPRUE-NIK PRESS EIGHTEENTH EDITION, MARCH 1995 - CELIAC IN THE 1990'S


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    Dr. Joseph Murray, of the Mayo Clinic Rochester, MN, is a gastroenterologist who specializes in treating Celiac disease. He gave a talk entitled Celiacs in the 90s at a conference hosted by the American Celiac Society on June 10-11, 1994. What follows are highlights of Dr. Murrays talk. Dr. Murray comes from Ireland, where Celiac Sprue (CS) is much more common. In Ireland, people have a much easier time dealing with the gluten-free (gluten-free) diet, whereas in the US it is almost as though it were considered unpatriotic to not eat wheat. You can reach Dr. Murray at: murray.joseph@mayo.edu.

    Dr. Murray believes that ALL Dermatitis Herpetiformis (DH) patients also have Celiac disease, whether they realize it or not. This celiac disease is often latent or silent. Earlier reports of patients with DH who did not have enteropathy (small intestinal damage) may not have counted milder forms of the celiac disease damage. (Editors note: Dr. Alexander, our physician advisor, believes most, but not all DH patients have Celiac disease.)

    Not every Celiac patient suffers weight loss or has diarrhea. One of his patients is a woman who weighed 400 lbs. when she was diagnosed. Her symptoms included nocturnal pain, and constipation. After checking the stomach and some other testing, they did a small intestine biopsy. When they found the classic flat villi, they suspected a lab mix-up because the womans symptoms were so atypical. In this case, the woman was suffering from cravings that caused her to greatly overeat. She was nutritionally over- compensating for the small intestine damage. After being diagnosed, the patient went on the gluten-free diet, lost some of these cravings, and promptly lost 50 lbs.

    Symptomatic Celiacs can be split into two groups: Those that have the classical CS symptoms and those that have atypical symptoms or only one of the classical symptoms. Patients in the first group are usually (though not always) diagnosed correctly by a gastroenterologist. Those in the second group, which make up about 2/3 of Dr. Murrays patients, are much more difficult to diagnose. Another factor is variable histology, which basically means that the villi are not always completely flat.

    The average adult has more than 20 feet of small intestine, and often, only the very front part gets severely damaged. Often, the remaining portion of the small intestine is able to compensate for what the damaged section is not absorbing. Dr. Murray believes that we are seeing fewer diagnosed Celiacs in the US than in Ireland because our diets are very calorie-dense. This means that even with malabsorption you are still getting a lot of nutrients so that you absorb enough to not lose weight and not fully develop other symptoms.

    Gluten causes damage that makes the gut leaky. This can lead to exposure of the bodys immune system to foreign allergens it would not otherwise see. This explains why Celiacs tend to have more allergies than the general population.

    Dr. Murray believes there are several triggers that can activate Celiac disease in genetically susceptible people:

    • A sudden change to a low fat diet, which usually means a sudden increase in starches, which usually means a dramatic increase in wheat-based products.
    • A woman is susceptible during postpartum, when the immune system is adjusting to the changes after delivery.
    • Surgery, particularly GI (gall bladder, etc.) can be a trigger.
    • Certain viral infections. Also, there is some suspicion that certain antibiotics can be triggers, though in these cases it could also be the infection that the antibiotics are fighting.

    Dr. Murray believes CS is not an allergy; it is an auto immune disease (Allergy vs. Intolerance). For Celiac disease to develop, two conditions must be met:

    • There must be a genetic predisposition towards Celiac disease. This involves very specific genetic factors.
    • The auto immune system must be triggered in some way.

    CS tends somewhat to run in families. The incidence in first degree relatives (parents, siblings, children) of a Celiac is about 10%. Anyone who has both a parent and a child with CS should be tested themselves for CS. CS is not entirely genetic. Among identical twins, if one has CS, about 70% of the time the other will also have CS. If the disease were entirely genetic, then the incidence in identical twins would be 100%. Among siblings that are HLA-matched to a Celiac sibling, the incidence of CS is about 30%. When not HLA-matched, the incidence rate is much lower.

    According to Dr. Murray, since CS is an auto immune disease, it follows that there are other auto immune diseases that are associated with it. Rheumatoid Arthritis, Lupus, Type I Diabetes, and some eye problems may occur more frequently in CS patients. This is not because of gluten or CS itself; it is because CS patients are part of a group that is genetically predisposed towards auto immune problems. About 5% of CS patients also have DH. At the University of Iowa, there have been 350 patients diagnosed with DH. Dr. Murray believes these have celiac disease. If these DH patients are only 5% of the Celiacs, then there should be about 7,000 Celiacs in the Iowa area. The number of diagnosed Celiacs is much less than 7,000. Even if this extrapolation is exaggerated, it is still clear that there are many undiagnosed Celiacs out in the general population.

    Most DH patients are prescribed Dapsone, which treats the symptoms. In most cases, they are told of the gluten-free diet, but it is not stressed and so most DH patients do not follow the diet. Dr. Murray finds this most distressing, because even if these patients dont have GI-related symptoms, there is still continual damage being done to the small intestine. Dermatologists, in general, dont give enough consideration to a GI problem as the source of DH. This places DH patients at an even greater risk of developing lymphoma in the small intestine.

    Lymphoma in the small intestine is extremely rare in the general population. Untreated Celiacs have a 70 or 80 times greater chance of developing lymphoma. A lifetime of not following the gluten-free diet gives a Celiac about a 7% chance of developing lymphoma. There is also an increased risk of other GI-related and lymphatic cancers. The risk of developing lymphoma immediately begins to decrease when a Celiac patient starts following a gluten-free diet. The risk continues to decrease until, after 3-5 years, it approaches that of the general population.

    Dr. Murray makes a small intestine X-ray a routine part of the treatment for a newly diagnosed adult Celiac patient, especially those over 40 years of age. Hes looking for lymphoma in the small intestine. It is very difficult to find, but if it is found it can usually be successfully treated.

    DH is caused by reactions to antibody complexes that, for reasons not totally clear, become deposited under the skin. These DH breakouts can continue for a long time after a gluten-free diet is adopted, because these deposits are not reabsorbed by the body very quickly. In about 70% of the cases, dapsone treatments can be discontinued after 18 months-2 years; for the other 30% it takes longer.

    How gluten-free should the diet be? Dr. Murray believes that Celiacs should treat gluten the same way they treat rat poison. Celiacs should never eat food if it is known to contain gluten. Accidental ingestion of gluten should be avoided as much as possible. For a Celiac, it is unacceptable for gluten to be ingested more than once a month, accidentally or otherwise. You can NOT judge whether a food has gluten by your reaction to it. Many Celiacs can ingest small amounts of gluten with no symptoms; however, the small intestine is still being damaged.

    Dr. Murray stressed that once you have Celiac disease, you will always have it; you will never be able to eat wheat or other gluten-containing products again. This is a fact of life that Celiacs simply must accept and live with.

    Lactose intolerance is not common in white Caucasian adults of northern European descent; probably close to 5%. (Editors note: According to Dr. Alexander, it occurs in about 30% of the adult US population.) A newly diagnosed Celiac may have temporary lactose-intolerance due to the damage in the gut; the intolerance should disappear once the gut heals. If you are lactose-intolerant, you should be aware that while ingesting lactose may make you uncomfortable, it does not damage the intestine. Most newly diagnosed Celiacs can use temporary lactose-intolerance as a way to check on the healing taking place. Once a month, they should drink half a glass of milk on an empty stomach and see if there is a reaction such as gas, cramps, diarrhea, etc. Failure to have a lactose reaction means that the gut is healing and the diet is working. For most people, lactose intolerance will disappear within six months of being on a gluten-free diet.

    Dr. Murray advises Celiac patients against smoking. Newly diagnosed Celiacs, as well as those not following a strict gluten-free diet, already have an increased risk of malignancy. Celiacs cannot afford to increase that risk even further by smoking.

    Refractory Sprue is a rare complication that generally occurs in older Celiac patients. This is a situation where malabsorption continues to occur even though the patient is on a gluten-free diet. Dr. Murray says the first three things you do when presented with refractory sprue are:

    • Check the diet
    • Check the diet again
    • Check the diet a third time

    Once you have verified that no hidden sources of gluten are causing the problem, then you recheck the diagnosis, look for enzyme supplements to help with digestion, check for pancreatic problems, lymphoma bacterial overgrowth, etc.

    Diagnosis of CS in the US is probably lower than it should be due to rigid medical practices and old thinking. One common label applied to people with stomach complaints is Irritable Bowel Syndrome. Dr. Murray calls that an intellectual trash can if it is used too widely and if doctors forget about other possibilities, in that it is occasionally over-diagnosed. It really means, There is something wrong with your stomach, and we dont know what it is. The occurrence of stress-induced bowel dysfunction is a real entity.

    In the US, CS is an exception to the rule concerning research efforts. It is considered to be a marginal disease. There is very little commercial interest in it. CS is definitely under-represented when compared to other diseases that get far more attention. Dr. Murray believes there are too many different national organizations that deal with CS. He believes these organizations need to unify and become one in order to advance the national agenda. He thinks local support groups such as our TCCSSG are doing a lot of good work; he considers belonging to a support group to be an essential part of the treatment of Celiac disease.

    Dr. Murray recommends physicians associated with local support groups should read a book that thoroughly explains this disease. The book is Coeliac Disease, by Michael Marsh, Blackwell Scientific Publications, November 1992. It costs about $175, but is well worth the cost if it helps a physician become more interested and learn more about this disease.


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    Celiac.com 03/21/2007 - Celiac disease is an inherited autoimmune disorder marked by an inflammatory condition in the small intestine that triggers when genetically susceptible individuals consume wheat. Symptoms of celiac most commonly begin around age two, after wheat has been introduced into the diet, or in the third and fourth decades of adult life.
    In genetically susceptible people, the ingestion of wheat gluten protein triggers an inflammatory reaction in the small bowel that causes a collapse of the villi, the small finger-like projections responsible for nutrient absorption. This greatly reduces the amount of surface area available for nutrient, fluid and electrolyte absorption. The extent of this intestinal damage generally correlates to the severity of the symptoms.
    Celiac generally presents 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, however many individuals have little or no symptoms at all.
    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 to be 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.
    Celiac Disease Diagnosis
    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 greatly 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 1 diabetes or other immune disorders or Downs syndrome. Otherwise, patients are generally screened case by case according to individual symptoms.
    Considerations for 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 3 years of age, as long as they have eaten gluten regularly for at least 1 year before testing.
    First-degree relatives of individuals with celiac disease may or may not manifest symptoms of the disease.
    Predisposition to gluten sensitivity has been mapped to the major histocompatibility (MHC) D region on chromosome 6. The most important HLA haplotype is DQw2, which is often in linkage with DR3. Other important HLA haplotypes identified are DR7 and DPB 1, 3, 4.1 and 4.2.
    The sites on these MHC class 2 expressed proteins responsible for interacting with gliadin and host T cell receptors thereby sensitizing the intestine to gluten have not been identified.
    Therefore, guidelines call for regular testing of asymptomatic individuals with negative serological tests, and who belong to at-risk groups. Treatment guidelines do not presently call for routinely testing autistic children for celiac disease, as there is no evidence that celiac is more in autistic children than in the general population.
    Celiac Disease Testing
    There is currently no test for diagnosing celiac disease with 100% certainty. For most people, the disappearance of symptoms, and/or the appearance of a "normal" biopsy following the adoption of a gluten-free diet provide the strongest evidence for celiac disease or gluten intolerance.
    A blood test, such as anti-tissue transglutaminase and anti-endomysial antibodies, can detect abnormally levels of antibodies, and is often used in the initial detection of celiac in 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 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 alone is no longer recommended for detecting celiac disease.
    Several serological markers are useful in diagnosing celiac disease. The first of these is IgG class antigliadin antibody (AGA). This antibody is sensitive to gluten, but it is also found in other diseases and thus is not a good a specific indicator of celiac.
    Generally, IgA class AGA is more specific, but about 2% of celiac patients show selective IgA deficiency, and thus show negative results, even though they have celiac.
    A positive IgG and IgA AGA gives a reported sensitivity of 96% to100% and specificity of 96% to 97%. Recent studies show Anti-reticulin antibodies (ARA) in people with celiac disease, but these appear to be nonspecific. In fact, taken alone, IgG ARA is largely ineffective. However, IgA ARA has sensitivity of 97% and a specificity of 98% in adults. These figures are much lower in children.
    IgA class anti-endomysial antibody (EMA) and human jejunal antibody (JAB) have recently been identified as both sensitive and specific for celiac disease.
    The antibody EMA, which reacts against endomysium reticulin fibers, has been found only in people with active celiac and not other diseases. As EMAs are associated with other diseases in children, they are a less accurate indicator of celiac in children than in adults.
    Studies in children less than 2 years old with celiac disease have shown a steep fall in EMA sensitivity, so EMA appears even less useful than in children over 2 years of age.
    Finally, since the EMA and JAB antibody tests may be negative in adults with celiac disease and IgA deficiency, they cannot be considered definitive for diagnosis of celiac disease.
    A complete panel of antibody tests seems to be most accurate method of diagnosing celiac disease.
    Taken together, a positive panel of IgG AGA, IgA AGA and EMA can predict the presence of celiac disease in 99.3% of patients. A negative panel of IgG AGA, IgA AGA and EMA can predict the absence of celiac in 99.6% of patients.
    These antibodies tend to diminish or disappear when individuals maintain a gluten-free diet.
    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 be used as a test to exclude celiac disease as a diagnosis.
    Celiac Disease Biopsy
    A diagnosis of celiac disease is generally confirmed through a biopsy, by looking for celiac associated damage to the small intestine.
    One important fact is that intestinal biopsies are regularly obtained endoscopically from the duodenum and therefore provide no information regarding the extent of disease along the jejunum.
    Flattening of the villi usually occurs first, and most severely, in the duodenum, as it the duodenum is the first part of the intestine to be exposed to gluten. Conversely, the villi of the jejunum, which receives much less exposure, are often asymptomatic, and nearly normal.
    In most of these individuals, treatment with a gluten-free diet results in the return of all villous and crypt structures to normal or near normal.
    Certain conditions, especially infection, can yield intestinal biopsy results that are similar to those of celiac disease, and it is important to consider and/or exclude these conditions when celiac disease is suspected.
    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 gluten-free diet 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 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, lunchmeat, mustard, pastas, processed meat, sausages, and yogurt.
    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 made with barley or wheat (there are gluten-free beers), though wine, brandy, whiskey and other non-wheat or non-barley alcohols are okay.
    Encourage patients to eat a diet rich in fish, fresh meats, rice, corn, soybean, potato, poultry, fruits and vegetables. 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 the label.
    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.
    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. 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.
    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. 

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    This article appeared in the Spring 2007 edition of Celiac.coms Scott-Free Newsletter.
    Celiac.com 08/29/2007 - The XII International Celiac Disease Symposium, proudly hosted by the Celiac Disease Center at Columbia University, featured presentations from researchers from all over the globe. The last session of the scientific portion of the symposium, entitled “Non-Dietary Therapies”, was full of controversy and fireworks. Talks given by Drs. Khosla, Gray, Paterson, Anderson and Mitea all revealed that potential alternatives to the gluten free diet are now being aggressively pursued. Several groups have even spun off from pharmaceutical companies to raise funds to test these alternatives in patient trials. However, several questions remain. How close are we to a “pill” or “vaccine” to treat or prevent celiac disease? And do we even need, or more importantly, WANT them, given that the diet is safe and effective?
    Any alternative therapy for celiac disease must be at least as safe as the gluten-free diet, which, if done correctly, has NO side-effects. So the bar is raised very high. An alternative must offer great medical benefit to celiac patients without causing any medical harm. It is also unclear how, exactly, these new therapies will be implemented. Can they treat existing celiac disease? Will they prevent those at increased risk for the disease (such as siblings) from having symptoms? Will these medications allow celiac patients to ingest as much gluten as they want, or will they just take away the fear of contamination when eating questionable foods? What follows is a summary of several important points raised by some of these speakers in regard to the research that their center is doing in this area of “alternative therapies for celiac disease.
    Two groups discussed their research on what has commonly become known as “the celiac pill”. The idea behind the “pill” is somewhat similar to the idea of taking a lactase enzyme supplement to digest the milk sugar lactose (if you are lactose intolerant). However, digesting the proteins that trigger the immune reaction in celiac disease is much more complex than digesting the simple sugar found in dairy products. The small fragments of the gluten proteins from wheat, rye and barley, which stimulate the immune system in someone with celiac disease, contain a large quantity of an amino acid called proline. The stomach and pancreatic enzymes in humans have difficulty digesting the fractions where these prolines are located, making the gluten highly resistant to complete digestion. The idea behind the “celiac pill” is to provide enzymes to break down the gluten into smaller fragments which will not be recognized by a celiac patient’s immune system. Therefore, theoretically, gluten would not cause an immune reaction and could be safely eaten.
    Dr. Gary Gray, an adult gastroenterologist working at Stanford University in California, addressed this issue in his presentation “Oral Enzyme Therapy”. Their study looked at 20 biopsy-proven celiacs in remission (without symptoms) who received orange juice with either gluten or gluten pre-treated with a special enzyme (abbreviated PEP, for prolyl endopeptidase). Each patient consumed a low dose of gluten daily, 5 grams, which is equivalent to one slice of bread. The patients completed a daily symptom questionnaire, and had urine and stool tests of to measure intestinal damage. The researchers concluded that pretreatment of gluten with PEP avoided the development of fat or carbohydrate malabsorption in the majority of those patients who, after a 2-week gluten challenge, developed fat or carbohydrate malabsorption. The PEP enzyme needs to be investigated further in larger trials of celiac patients.
    Cristina Mitea, working with Dr. Fritz Koning at Leiden University in The Netherlands, also presented some data using similar technology, entitled “Enzymatic degradation of gluten in a GI-tract model”. This group published in 2006 that the above described PEP enzyme may not work optimally in the celiac patient, since it is not active at low stomach pH. The PEP enzyme may also be broken down by pepsin, a digestive enzyme in the stomach, before it reaches the small bowel where gluten causes the most damage. Given these facts, this group of researchers characterized a prolyl endoprotease enzyme, derived from the fungus Aspergillus niger, abbreviated AN-PEP. The AN-PEP enzyme, according to some publications, has been shown to work at stomach pH while resisting pepsin digestion. In the lab, the AN-PEP was able to degrade intact gluten as well as small fragments of gluten, including those that stimulate the immune system in patients with celiac disease. It also appeared to act within minutes, which is 60 times faster than PEP. This is particularly important, as ingested gluten will leave the stomach to enter the small bowel within 1 to 4 hours after being eaten. These researchers state that this enzyme is very stable, and could be produced at low cost at food-grade quality in an industrial setting. However, it has not yet been tested in human clinical studies.
    In summary, some of these future potential treatments include:
    The development of genetically detoxified grains Oral or intranasal celiac vaccines to induce tolerance Inhibitors to the effects of zonulin on intestinal permeability Detoxification of immunogenic gliadin peptides (or gluten proteolysis) via oral peptidase supplementation Inhibitors of tissue transglutaminase Dr. Michelle Pietzak, “The Gluten Free MD” is an Assistant Professor of Clinical Pediatrics at the University of Southern California Keck School of Medicine. She sees patients at Childrens Hospital Los Angeles and Los Angeles County Women’s and Children’s Hospital. With New Era Productions, she has recently released an audio celiac disease set as well as a 2 disc DVD set about celiac disease and the gluten free diet, available at www.glutenfreemd.com.

    Rivkah Roth D.O., D.N.M.
    Celiac.com 08/28/2012 - What's In A Name and When Does Celiac Predisposition Become A Disease?
    No doubt that global awareness about celiac disease and its possible involvement in a myriad of other (mostly autoimmune response related) conditions is growing. Growing, unfortunately, is confusion about terminologies and medical implications.


    The “Common” Understanding
    "Celiac disease" has become a generic blanket term not unlike how "Kleenex" today signifies no more than a box of tissue paper of any brand. So, in the public mind, "celiac disease" today stands for everything connected to a reaction to gluten.[1]
    Such an approach is highly imprecise and misses
    the need for distinction between non-celiac and/or celiac gluten sensitivity and the fact that a predisposition does not necessarily constitute disease.

    The 2012 Internationally Accepted Definition
    In an attempt to bring some clarity to the medical community, the world’s leading celiac minds earlier in 2012 met for an international convention in Oslo, Norway.[2]  During that convention, and after considering many of the most commonly used terms, they recognized

    …the presence of genetic, predisposing patterns…
    and called for a

    …distinction between "celiac disease" versus "gluten-related disorders"… [3]
    Let us be clear: This terminology refers solely to the underlying toxic effect of gluten rather than the possibly resulting disorders that may be based on other, additional triggers as well.


    Genotyping Tells Non-Celiac from Celiac Gluten Sensitivity
    Along with ever mounting genotype-related research, detailed HLA-DQ2/DQ8 human leukocyte antigen genotyping[4] today allows us to distinguish between predispositions to non-celiac and/or celiac gluten sensitivity (NCCGS) predisposition.
    Increasingly, research results link gluten issues to a considerable list of specific conditions and, therefore, allow for and promote a “natural” approach (i.e. gluten free diet and lifestyle) to resolve a complex panel of non-obvious signs and symptoms.
    Accordingly, "Celiac" is not (yet) a disease but a metabolic predisposition, i.e. the body’s inability to digest certain grain proteins, prolamines, etc.—much like a gasoline fueled car will sputter and eventually corrode on diesel fuel.


    Predisposition vs. Disease
    A genetic predisposition to celiac only becomes a disease (e.g. celiac disease or one of the non-celiac gluten sensitivity enabled conditions)[5] if the body’s inability to digest gluten and certain other grain proteins is ignored at the expense of the immune system.[6]
    In other words, an individual genetic predisposition to celiac only develops into full blown disease if that particular individual does not adhere to a gluten-free diet and lifestyle.
    An European Union et al commissioned research paper concluded:

    The environment clearly plays a crucial role in the development of celiac disease: No gluten, no disease!….
    …Because gluten is present in relatively large amounts in a variety of common food products, the daily gluten intake in a Western diet is high. In combination, we see that every HLA-DQ2– and/or -DQ8–positive individual is exposed to a large repertoire of immunogenic and abundant gluten peptides, and this may be an important factor determining disease development. There is, at present, no evidence linking additional environmental factors to celiac disease. [7]


    Big Business: Catering to a Gluten Free Diet
    The facts are everywhere and are illustrated further by these research abstract numbers posted on PubMed:
    18,565 on “celiac disease” (607 alone in 2012 – Jan. to Jly.) 9,689 on “gluten” (385 in 2012 – Jan. to Jly.) 3,447 on “glutenfree” (192 in 2012 – Jan. to Jly.) In addition, 38,878 abstracts deal with wheat research, whereof 1,862 in 2011, and 1,384 in 2012 to date (Jan. to Jly.).
    Clearly: $6.1bn spent 2011 on gluten-free foods in the USA—and a 30% growth from 2006 to 2010 in Canada to $2.64bn—indicate “Big Business” complete with the risk of missed, omitted, and mis-information for the goal of promoting greater consumption of gluten-free processed foods.
     
    The Challenge
    Our present naming confusion, therefore, may end up fuelling potential manipulation and mismanagement of the patient and consumer from the part of medical, pharmaceutical, supplement, and food industries.
    Even the above mentioned latest attempt at coordinating nomenclature and distinction between non-celiac and/or celiac gluten sensitivity brings with it several major flaws and challenges:
    It may take years for new naming conventions to become accepted throughout the international medical and dietary community. Recognizing a term such as "gluten-related disorders" or “non-celiac gluten sensitivity” calls for a total revamping of our medical and diagnostic systems in order for the large number (so far about 160) of autoimmune and other disorders to be recognized as gluten-related.   In addition, future questions will arise as research identifies and confirms more genetic links:
    Already, clinic practice shows that some of the "celiac" patients, previously diagnosed by positive intestinal biopsy[8] and serological findings now, on genotyping[9], turn out to carry "non-celiac" and not “celiac” gluten sensitivity alleles. Where does this leave such individuals on the traditionally used "celiac disease" versus "gluten-related disorder" specter?
    Clearly, despite good intention for a more precise naming distinction, it appears that additional work is needed in order to entrench new medical terminology and disease pictures.
     
    Conclusion
    Until then, whenever one of my patients receives a positive HLA gene test, I will adhere for clarity’s sake to the terms of “non-celiac” and/or “celiac gluten sensitivity” (NCCGS).
    This terminology refers solely to the underlying toxic effect of gluten and prevents a wrong implication of predisposition=disease diagnosis. Instead, “non-celiac and/or celiac gluten sensitivity” will simply point to the inherited underlying predisposition to specific additional triggers and complications if exposed to gluten.
    Most importantly, I will make sure to instill in my patients that disease is not the inevitable outcome of their genetic predisposition, and that a 100% gluten-free diet and lifestyle allows for avoidance, control, and perhaps even reversal of a complex web of interrelated autoimmune-based conditions and disorders, both for non-celiac and for celiac gluten sensitivity related disorders.

    [1] http://www.ncbi.nlm.nih.gov/pubmed/22351716  Ann Intern Med. 2012 Feb 21;156(4):309-11. Nonceliac gluten sensitivity: sense or sensibility?
    [2] http://www.ncbi.nlm.nih.gov/pubmed/22345659  Gut. 2012 Feb 16. [Epub ahead of print] The Oslo definitions for coeliac disease and related terms.
    [3] http://www.ncbi.nlm.nih.gov/pubmed/19940509  Int Arch Allergy Immunol. 2010;152(1):75-80. Epub 2009 Nov 24. Differential mucosal IL-17 expression in two gliadin-induced disorders: gluten sensitivity and the autoimmune enteropathy celiac disease.
    [4] http://www.ncbi.nlm.nih.gov/pubmed/22123644  Curr Opin Gastroenterol. 2012 Mar;28(2):104-12.  Advances in coeliac disease.
    [5] See future articles posted in these pages...  
    [6] http://www.ncbi.nlm.nih.gov/pubmed/21787225  Int Rev Immunol. 2011 Aug;30(4):197-206.  Important lessons derived from animal models of celiac disease.
    [7] http://www.ncbi.nlm.nih.gov/pmc/articles/PMC209453/?tool=pmcentrez  J Clin Invest. 2001 November 1; 108(9): 1261–1266. doi:  10.1172/JCI14344  PMCID: PMC209453  Interplay between genetics and the environment in the development of celiac disease: perspectives for a healthy life.
    [8] http://www.ncbi.nlm.nih.gov/pubmed/22742547  Arch Pathol Lab Med. 2012 Jul;136(7):735-45.  An update on celiac disease histopathology and the road ahead.
    [9] http://www.ncbi.nlm.nih.gov/pubmed/21593645  J Pediatr Gastroenterol Nutr. 2011 Jun;52(6):729-33.  HLA-DQ genotyping combined with serological markers for the diagnosis of celiac disease: is intestinal biopsy still mandatory?

  • Recent Articles

    Jefferson Adams
    Celiac.com 04/26/2018 - Emily Dickson is one of Canada’s top athletes. As a world-class competitor in the biathlon, the event that combines cross-country skiing with shooting marksmanship, Emily Dickson was familiar with a demanding routine of training and competition. After discovering she had celiac disease, Dickson is using her diagnosis and gluten-free diet a fuel to help her get her mojo back.
    Just a few years ago, Dickson dominated her peers nationally and won a gold medal at Canada Games for both pursuit and team relay. She also won silver in the sprint and bronze in the individual race. But just as she was set to reach her peak, Dickson found herself in an agonizing battle. She was suffering a mysterious loss of strength and endurance, which itself caused huge anxiety for Dickson. As a result of these physical and mental pressures, Dickson slipped from her perch as one of Canada's most promising young biathletes.
    Eventually, in September 2016, she was diagnosed with celiac disease. Before the diagnosis, Dickson said, she had “a lot of fatigue, I just felt tired in training all the time and I wasn't responding to my training and I wasn't recovering well and I had a few things going on, but nothing that pointed to celiac.”
    It took a little over a year for Dickson to eliminate gluten, and begin to heal her body. She still hasn’t fully recovered, which makes competing more of a challenge, but, she says improving steadily, and expects to be fully recovered in the next few months. Dickson’s diagnosis was prompted when her older sister Kate tested positive for celiac, which carries a hereditary component. "Once we figured out it was celiac and we looked at all the symptoms it all made sense,” said Dickson.
    Dickson’s own positive test proved to be both a revelation and a catalyst for her own goals as an athlete. Armed with there new diagnosis, a gluten-free diet, and a body that is steadily healing, Dickson is looking to reap the benefits of improved strength, recovery and endurance to ramp up her training and competition results.
    Keep your eyes open for the 20-year-old native of Burns Lake, British Columbia. Next season, she will be competing internationally, making a big jump to the senior ranks, and hopefully a regular next on the IBU Cup tour.
    Read more at princegeorgecitizen.com

    Jefferson Adams
    Celiac.com 04/25/2018 - A team of Yale University researchers discovered that bacteria in the small intestine can travel to other organs and trigger an autoimmune response. In this case, they looked at Enterococcus gallinarum, which can travel beyond the gut to the spleen, lymph nodes, and liver. The research could be helpful for treating type 1 diabetes, lupus, and celiac disease.
    In autoimmune diseases, such as type 1 diabetes, lupus, and celiac disease, the body’s immune system mistakenly attacks healthy cells and tissues. Autoimmune disease affects nearly 24 million people in the United States. 
    In their study, a team of Yale University researchers discovered that bacteria in the small intestine can travel to other organs and trigger an autoimmune response. In this case, they looked at Enterococcus gallinarum, which can travel beyond the gut to the spleen, lymph nodes, and liver. They found that E. gallinarum triggered an autoimmune response in the mice when it traveled beyond the gut.
    They also found that the response can be countered by using antibiotics or vaccines to suppress the autoimmune reaction and prevent the bacterium from growing. The researchers were able to duplicate this mechanism using cultured human liver cells, and they also found the bacteria E. gallinarum in the livers of people with autoimmune disease.
    The team found that administering an antibiotic or vaccine to target E. gallinarum suppressed the autoimmune reaction in the mice and prevented the bacterium from growing. "When we blocked the pathway leading to inflammation," says senior study author Martin Kriegel, "we could reverse the effect of this bug on autoimmunity."
    Team research team plans to further investigate the biological mechanisms that are associated with E. gallinarum, along with the potential implications for systemic lupus and autoimmune liver disease.
    This study indicates that gut bacteria may be the key to treating chronic autoimmune conditions such as systemic lupus and autoimmune liver disease. Numerous autoimmune conditions have been linked to gut bacteria.
    Read the full study in Science.

    Tammy Rhodes
    Celiac.com 04/24/2018 - Did you know in 2017 alone, the United States had OVER TENS OF THOUSANDS of people evacuate their homes due to natural disasters such as fires, floods, hurricanes, tornadoes and tsunamis? Most evacuation sites are not equipped to feed your family the safe gluten free foods that are required to stay healthy.  Are you prepared in case of an emergency? Do you have your Gluten Free Emergency Food Bag ready to grab and go?  
    I have already lived through two natural disasters. Neither of which I ever want to experience again, but they taught me a very valuable lesson, which is why I created a Gluten Free Emergency Food Bag (see link below). Here’s my story. If you’ve ever lived in or visited the Los Angeles area, you’re probably familiar with the Santa Ana winds and how bitter sweet they are. Sweet for cleaning the air and leaving the skies a brilliant crystal blue, and bitter for the power outages and potential brush fires that might ensue.  It was one of those bitter nights where the Santa Ana winds were howling, and we had subsequently lost our power. We had to drive over an hour just to find a restaurant so we could eat dinner. I remember vividly seeing the glow of a brush fire on the upper hillside of the San Gabriel Mountains, a good distance from our neighborhood. I really didn’t think much of it, given that it seemed so far from where we lived, and I was hungry! After we ate, we headed back home to a very dark house and called it a night. 
    That’s where the story takes a dangerous turn….about 3:15am. I awoke to the TV blaring loudly, along with the lights shining brightly. Our power was back on! I proceeded to walk throughout the house turning everything off at exactly the same time our neighbor, who was told to evacuate our street, saw me through our window, assuming I knew that our hillside was ablaze with flames. Flames that were shooting 50 feet into the air. I went back to bed and fell fast asleep. The fire department was assured we had left because our house was dark and quiet again. Two hours had passed.  I suddenly awoke to screams coming from a family member yelling, “fire, fire, fire”! Flames were shooting straight up into the sky, just blocks from our house. We lived on a private drive with only one way in and one way out.  The entrance to our street was full of smoke and the fire fighters were doing their best to save our neighbors homes. We literally had enough time to grab our dogs, pile into the car, and speed to safety. As we were coming down our street, fire trucks passed us with sirens blaring, and I wondered if I would ever see my house and our possessions ever again. Where do we go? Who do we turn to? Are shelters a safe option? 
    When our daughter was almost three years old, we left the West Coast and relocated to Northern Illinois. A place where severe weather is a common occurrence. Since the age of two, I noticed that my daughter appeared gaunt, had an incredibly distended belly, along with gas, stomach pain, low weight, slow growth, unusual looking stool, and a dislike for pizza, hotdog buns, crackers, Toast, etc. The phone call from our doctor overwhelmed me.  She was diagnosed with Celiac Disease. I broke down into tears sobbing. What am I going to feed my child? Gluten is everywhere.
    After being scoped at Children's Hospital of Chicago, and my daughters Celiac Disease officially confirmed, I worried about her getting all the nutrients her under nourished body so desperately needed. I already knew she had a peanut allergy from blood tests, but just assumed she would be safe with other nuts. I was so horribly wrong. After feeding her a small bite of a pistachio, which she immediately spit out, nuts would become her enemy. Her anaphylactic reaction came within minutes of taking a bite of that pistachio. She was complaining of horrible stomach cramps when the vomiting set in. She then went limp and starting welting. We called 911.
    Now we never leave home without our Epipens and our gluten free food supplies. We analyze every food label. We are hyper vigilant about cross contamination. We are constantly looking for welts and praying for no stomach pain. We are always prepared and on guard. It's just what we do now. Anything to protect our child, our love...like so many other parents out there have to do every moment of ever day!  
    Then, my second brush with a natural disaster happened, without any notice, leaving us once again scrambling to find a safe place to shelter. It was a warm and muggy summer morning, and my husband was away on a business trip leaving my young daughter and me to enjoy our summer day. Our Severe Weather Alert Radio was going off, again, as I continued getting our daughter ready for gymnastics.  Having gotten used to the (what seemed to be daily) “Severe Thunderstorm warning,” I didn’t pay much attention to it. I continued downstairs with my daughter and our dog, when I caught a glimpse out the window of an incredibly black looking cloud. By the time I got downstairs, I saw the cover to our grill literally shoot straight up into the air. Because we didn’t have a fenced in yard, I quickly ran outside and chased the cover, when subsequently, I saw my neighbor’s lawn furniture blow pass me. I quickly realized I made a big mistake going outside. As I ran back inside, I heard debris hitting the front of our home.  Our dog was the first one to the basement door! As we sat huddled in the dark corner of our basement, I was once again thinking where are we going to go if our house is destroyed. I was not prepared, and I should have been. I should have learned my lesson the first time. Once the storm passed, we quickly realized we were without power and most of our trees were destroyed. We were lucky that our house had minimal damage, but that wasn’t true for most of the area surrounding us.  We were without power for five days. We lost most of our food - our gluten free food.
    That is when I knew we had to be prepared. No more winging it. We couldn’t take a chance like that ever again. We were “lucky” one too many times. We were very fortunate that we did not lose our home to the Los Angeles wildfire, and only had minimal damage from the severe storm which hit our home in Illinois.
      
    In 2017 alone, FEMA (Federal Emergency Management Agency) had 137 natural disasters declared within the United States. According to FEMA, around 50% of the United States population isn’t prepared for a natural disaster. These disasters can happen anywhere, anytime and some without notice. It’s hard enough being a parent, let alone being a parent of a gluten free family member. Now, add a natural disaster on top of that. Are you prepared?
    You can find my Gluten Free Emergency Food Bags and other useful products at www.allergynavigator.com.  

    Jefferson Adams
    Celiac.com 04/23/2018 - A team of researchers recently set out to learn whether celiac disease patients commonly suffer cognitive impairment at the time they are diagnosed, and to compare their cognitive performance with non-celiac subjects with similar chronic symptoms and to a group of healthy control subjects.
    The research team included G Longarini, P Richly, MP Temprano, AF Costa, H Vázquez, ML Moreno, S Niveloni, P López, E Smecuol, R Mazure, A González, E Mauriño, and JC Bai. They are variously associated with the Small Bowel Section, Department of Medicine, Dr. C. Bonorino Udaondo Gastroenterology Hospital; Neurocience Cognitive and Traslational Institute (INECO), Favaloro Fundation, CONICET, Buenos Aires; the Brain Health Center (CESAL), Quilmes, Argentina; the Research Council, MSAL, CABA; and with the Research Institute, School of Medicine, Universidad del Salvador.
    The team enrolled fifty adults with symptoms and indications of celiac disease in a prospective cohort without regard to the final diagnosis.  At baseline, all individuals underwent cognitive functional and psychological evaluation. The team then compared celiac disease patients with subjects without celiac disease, and with healthy controls matched by sex, age, and education.
    Celiac disease patients had similar cognitive performance and anxiety, but no significant differences in depression scores compared with disease controls.
    A total of thirty-three subjects were diagnosed with celiac disease. Compared with the 26 healthy control subjects, the 17 celiac disease subjects, and the 17 disease control subjects, who mostly had irritable bowel syndrome, showed impaired cognitive performance (P=0.02 and P=0.04, respectively), functional impairment (P<0.01), and higher depression (P<0.01). 
    From their data, the team noted that any abnormal cognitive functions they saw in adults with newly diagnosed celiac disease did not seem not to be a result of the disease itself. 
    Their results indicate that cognitive dysfunction in celiac patients could be related to long-term symptoms from chronic disease, in general.
    Source:
    J Clin Gastroenterol. 2018 Mar 1. doi: 10.1097/MCG.0000000000001018.

    Connie Sarros
    Celiac.com 04/21/2018 - Dear Friends and Readers,
    I have been writing articles for Scott Adams since the 2002 Summer Issue of the Scott-Free Press. The Scott-Free Press evolved into the Journal of Gluten Sensitivity. I felt honored when Scott asked me ten years ago to contribute to his quarterly journal and it's been a privilege to write articles for his publication ever since.
    Due to personal health reasons and restrictions, I find that I need to retire. My husband and I can no longer travel the country speaking at conferences and to support groups (which we dearly loved to do) nor can I commit to writing more books, articles, or menus. Consequently, I will no longer be contributing articles to the Journal of Gluten Sensitivity. 
    My following books will still be available at Amazon.com:
    Gluten-free Cooking for Dummies Student's Vegetarian Cookbook for Dummies Wheat-free Gluten-free Dessert Cookbook Wheat-free Gluten-free Reduced Calorie Cookbook Wheat-free Gluten-free Cookbook for Kids and Busy Adults (revised version) My first book was published in 1996. My journey since then has been incredible. I have met so many in the celiac community and I feel blessed to be able to call you friends. Many of you have told me that I helped to change your life – let me assure you that your kind words, your phone calls, your thoughtful notes, and your feedback throughout the years have had a vital impact on my life, too. Thank you for all of your support through these years.