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      Frequently Asked Questions About Celiac Disease   04/07/2018

      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 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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    SO WHY DO CELIACS STILL NEED BIOPSY? BY WILLIAM DICKEY, PH.D., M.D., F.A.C.G.


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    This article appeared in the Summer 2005 edition of Celiac.coms Scott-Free Newsletter.

    Celiac.com 01/11/2006 - For many years, biopsy of the small bowel demonstrating villous atrophy has been fundamental to the diagnosis of celiac disease. Older celiacs will remember, fondly or otherwise, the Crosby suction biopsy device which was swallowed attached to a long tube and made its way down to the small bowel where, position confirmed by x-rays, it guillotined a small portion of tissue. The procedure was tedious and technical failures common—only identified when the device was hauled up after several hours. Later it became clear that biopsies from the duodenum obtained during endoscopy were just as good, and the biopsy process became a five minute job with no need for X-rays. Nevertheless, many celiacs are reluctant to undergo biopsy and its necessity is increasingly questioned, particularly now that blood tests for celiac-related antibodies are highly sensitive and specific. There are a number of reasons why, in my own practice, biopsies continue to be helpful in celiacs diagnosed in adulthood.

    • Biopsies are necessary when blood tests are negative. While endomysial (EmA) and tissue transglutaminase (TTGA) antibodies are detectable in most cases where villous atrophy is present, 5-10% of patients lack these antibodies1. In this situation, where the story is suggestive of celiac, perhaps with a family history or strongly suggestive symptoms, biopsy is the only way to make the diagnosis. Increasingly, physicians recognize that many patients with gluten sensitivity do not have villous atrophy (Grade III of the Marsh classification) of "classic" celiac disease, but have milder abnormalities such as crypt hyperplasia (Marsh II) or an excess of the inflammatory cells called lymphocytes (Marsh I). Patients in these categories are less likely to have positive serology2.
    • Biopsies are necessary where false positive blood tests may occur. TTGA, particularly where levels are low, may be associated with diseases other than celiac: ulcerative colitis, Crohns disease, arthritis and liver diseases without any evidence of celiac disease have been linked3. Newer TTGA tests have steadily improved in this regard but I still would be reluctant to diagnose celiac on a TTGA test alone. "False positive" EmA is a different issue which I will return to.
    • Biopsies give a baseline for comparison. Suppose a patient starts a gluten-free diet without biopsy—we dont know whether she or he had Marsh I, II or III or even normal histology. A year later, same patient develops new symptoms of diarrhea, weight loss, whatever. Well get a duodenal biopsy as part of the workup, but its going to be difficult to interpret without knowing what things were like before going gluten-free. Specifically, a baseline to look back at tells us whether the small bowel is better, worse or no different, and helps us decide whether we need to focus on celiac disease as the most likely cause of new problems or explore other possibilities involving the rest of the gut. The biggest diagnostic disaster of all, of course, is the gluten-free diet started without any sort of baseline investigation including antibodies, raising the specter of the infamous gluten challenge if a definitive diagnosis is needed.
    • Biopsies provide a "gold standard" assessment of the state of the bowel. There has been much excitement recently about capsule endoscopy, a wireless device the size of a large pill (not to be confused with the Crosby capsule!) which makes its own way down the small bowel taking pictures as it goes. Characteristic abnormalities can be seen in celiac disease, raising the possibility that this device might be useful in diagnosis. If experience with conventional endoscopes is any guide, however, these abnormalities are missing in a sizeable minority of celiacs particularly with mild disease4 (Capsule endoscopy in its present state of development can not take biopsies). Certainly the capsule allows assessment of the bowel beyond the reach of conventional "anaconda-style" endoscopes, but I am not convinced at present that it can replace biopsy.
    • A follow-up biopsy gives an indicator of progress. I offer my patients a repeat biopsy after two years gluten-free and perhaps surprisingly most take up the offer and are keen to hear how things have improved. Ive increased the biopsy interval from one to two years because only 40% of people had complete recovery after 12 months gluten-free5. EmA and TTGA disappearance is only a marker of how successful gluten exclusion has been and is not a reliable indicator of bowel recovery. Does persisting villous atrophy matter if the patient is doing well on a gluten-free diet? Intuitively, one might like to keep a closer eye on the patient with persistently flat biopsies, who could be at greater risk of complications in the future6.
    • The endoscopy not only allows examination and biopsy of the duodenum but also a look at the esophagus and stomach. Sad fact of the ageing process is that you start to collect diseases like trading cards, and just because youre celiac doesnt mean you cant have something else. Its important to have a good look for bleeding lesions in the upper gut even if the blood work for a seventy year old with anemia says celiac (and check out the colon too, but thats a topic for another day).

    On the other hand, we recognize that biopsies are not always the final arbiter in diagnosis. While the jury is still out on what a TTGA positive, biopsy negative result means with regard to gluten sensitivity, there is plenty of evidence that a positive EmA generally does mean that biopsy abnormalities will follow: My own follow-up of EmA positive, biopsy negative patients indicates that they will develop abnormal histology if not treated7. So it makes sense to start EmA positive people on gluten-free without waiting for significant bowel damage—and as already stated, even a normal baseline biopsy will provide a reference for any problems that might arise in the future.

    Sometimes I meet a patient with bad gut symptoms but completely normal blood work up and biopsies and when all else fails I will run a trial of gluten-free. It often works, particularly if there is a family history of celiac. But then again, if it doesnt, we have a baseline normal biopsy to say there is no need to persevere.

    I guess in the future diagnosis of gluten sensitivity will rely on totting up various factors, none individually essential: blood tests, biopsies, family history, genetic testing for the HLA celiac genes. Some researchers are making a case for dropping the biopsy requirement if the antibody blood work checks out in children8, for whom (and for the parents) endoscopy and biopsy is a major issue. In adults however it is quick, straightforward and safe and will remain a key part of my celiac workup.

    William Dickey is a gastroenterologist at Altnagelvin Hospital, Londonderry, Northern Ireland, with over 400 celiac patients attending his clinics. His interest in celiac disease goes back some fourteen years and he has published extensively on the subject. He is an associate member of Coeliac UKs Medical Advisory Council.

    References:

    • Dickey W, McMillan SA, Hughes DF. Sensitivity of serum tissue transglutaminase antibodies for endomysial antibody positive and negative coeliac disease. Scand J Gastroenterol 2001; 36: 511-4.
    • Wahab PJ, Crusius JBA, Meijer JWR, Mulder CJJ. Gluten challenge in borderline gluten-sensitive enteropathy. Am J Gastroenterol 2001; 96: 1464-69.
    • Di Tola M, Sabbatella L, Anania MC, Viscido A, Caprilli R, Pica R, Paoluzi P, Picarelli A. Anti-tissue transglutaminase antibodies in inflammatory bowel disease: new evidence. Clin Chem Lab Med. 2004;42(10):1092-7.
    • Oxentenko AS, Grisolano SW, Murray JA, Burgart LJ, Dierkhising RA, Alexander JA. The insensitivity of endoscopic markers in celiac disease. Am J Gastroenterol. 2002 Apr;97(4):933-8.
    • Dickey W, Hughes DF, McMillan SA. Disappearance of endomysial antibodies in treated celiac disease does not indicate histological recovery. Am J Gastroenterol 2000; 95: 712-4.
    • Meijer JWR, Wahab PJ, Mulder CJJ. Histologic follow-up of people with celiac disease on a gluten-free diet: slow and incomplete recovery. Am J Clin Pathol 118(3):459-63, 2002 Sep.
    • Dickey W, Hughes DF, McMillan SA. Patients with serum IgA endomysial antibodies and intact duodenal villi: clinical characteristics and management options. Scand J Gastroenterol 2005: in press
    • Barker CC, Mitton C, Jevon G, Mock T.Can tissue transglutaminase antibody titers replace small-bowel biopsy to diagnose celiac disease in select pediatric populations? Pediatrics. 2005 May;115(5):1341-6

     


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    Guest Barbara Filafilo

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    Hello! I am a 52 year old Canadian of Irish descent with GI symptoms for 20 years. At present I am obese. My TTG is positive, EMA also positive 1:10,biopsy negative. Also I've had fractures X 13 since 1998. My gastroenterologist was certain I had Celiac but can't call it that according to Canadian protocol. I went gluten free for 2 months and I felt better. My GP thinks I'm a nut.The gastroenterologist suggested I stay gluten free in spite of the negative biopsy. 5 years ago I had a biopsy that showed increased IELs but the blood test was not ordered at the time (oversight aka mistake). What do you think? Colonoscopy was also negative for microscopic colitis. Barb

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    admin
    Celiac.com 10/29/2002 - Dr Robert Anderson, Research Fellow at the Nuffield Department of Medicine at the University of Oxford (now based at the Royal Melbourne Hospital in Australia), and colleagues recently announced their intent to begin work on a vaccine that could cure celiac disease. The Australian teams work will be based on Dr. Andersons earlier groundbreaking Oxford research that identified the specific set of protein sequences in gluten that cause damage to the guts of those with celiac disease (see: Nature Medicine 6, 337 - 342 - 01 Mar 2000). In addition to finding a possible cure for celiac disease the teams research could open the door for a specific diagnostic test for the disease, new treatment and prevention strategies, and even the possibility of producing grains that do not contain the harmful sequences. Dr. Andersons future research will focused on proving that a specific "toxic peptide" can be used to desensitize or induce tolerance in people with celiac disease, and any vaccine would likely be the "toxic peptide" itself or a modified form of it.
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    Celiac.com 09/12/2006 – A recent study by researchers at Stanford University has found that barley endoprotease EP-B2 is effective at digesting gluten in rats, and should be studied further as an “adjunct to diet control” in human celiac disease patients. This new finding adds to Stanford’s growing body of work on enzyme therapy as a possible treatment for those with celiac disease, and may one day lead to a effective treatment. Effect of barley endoprotease EP-B2 on gluten digestion in the intact rat.
    J Pharmacol Exp Ther. 2006 Sep;318(3):1178-86.
    Gass J, Vora H, Bethune MT, Gray GM, Khosla C.
    Stanford University.

    Abstract:

    "Celiac Sprue is a multi-factorial disease characterized by an intestinal inflammatory response to ingested gluten. Proteolytically resistant gluten peptides from wheat, rye and barley persist in the intestinal lumen, and elicit an immune response in genetically susceptible individuals. Here we demonstrate the in vivo ability of a gluten-digesting protease ("glutenase") to accelerate the breakdown of a gluten-rich solid meal. The proenzyme form of endoprotease B, isoform 2 from Hordeum vulgare (EP-B2) was orally administered to adult rats with a solid meal containing 1 g gluten. Gluten digestion in the stomach and small intestine was monitored as a function of enzyme dose and time by HPLC and mass spectrometry. In the absence of supplementary EP-B2, gluten was solubilized and proteolyzed to a limited extent in the stomach, and was hydrolyzed and assimilated mostly in the small intestine. In contrast, EP-B2 was remarkably effective at digesting gluten in the rat stomach in a dose and time dependent fashion. At a 1:25 EP-B2:gluten dose, the gastric concentration of the highly immunogenic 33-mer gliadin peptide reduced by more than 50-fold within 90 min, with no overt signs of toxicity. Evaluation of EP-B2 as an adjunct to diet control is therefore warranted in celiac patients."

    Jefferson Adams
    Celiac.com 04/15/2009 - A recent clinical study has shown B vitamins to be beneficial for celiac sufferers following gluten-free diets. Vitamin deficiency and less than optimal health are common problems for people with celiac disease, even those who faithfully follow a gluten-free diet. Common problems associated with long-term celiac disease include general malaise, and less than optimal well-being.
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    These improvements, the normalization of tHcy levels, together with the substantial increase in well-being, led the research team to conclude that people living gluten-free with long-term celiac disease do indeed benefit from daily supplemental doses of vitamin B, and that doctors should consider advising the use of B vitamins supplements for these patients.

    Aliment Pharmacol Ther. 2009 Apr 15;29(8):811-6.


    Jefferson Adams
    Celiac.com 10/13/2009 - The standard method of measuring successful observance of a gluten-free diet in patients with celiac disease is through a dietary interview performed by health professional. However, there is currently have no simple, objective method for conducting such a dietary interview.
    To address this discrepancy, a team of researchers recently designed an easy, quick questionnaire based on four simple questions which yield a five-level score (0–IV). The score provides the test individual with an indication of their compliance level.
    The research team was made up of Federico Biagi, Alida Andrealli, Paola Ilaria Bianchi, Alessandra Marchese, Catherine Klersy, and Gino Roberto Corazza.
    The team recently set out to assess the accuracy of the questionnaire. They ran the questions past 168 celiac patients, 126 females and 42 males, with a median age of 42·4 (SD 12·9) years. All subjects were allegedly following a gluten-free diet (median 82, 25th–75th percentile 50–108, range 15–389 months).
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    From these results, the researchers conclude that the questionnaire offers a simple, accurate way to verify compliance with a gluten-free diet for patients with celiac disease.
    Source:
    British Journal of Nutrition (2009), 102, 882–887


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    admin
    WHAT IS CELIAC DISEASE?
    Celiac disease is an autoimmune condition that affects around 1% of the population. People with celiac disease suffer an autoimmune reaction when they consume wheat, rye or barley. The immune reaction is triggered by certain proteins in the wheat, rye, or barley, and, left untreated, causes damage to the small, finger-like structures, called villi, that line the gut. The damage occurs as shortening and villous flattening in the lamina propria and crypt regions of the intestines. The damage to these villi then leads to numerous other issues that commonly plague people with untreated celiac disease, including poor nutritional uptake, fatigue, and myriad other problems.
    Celiac disease mostly affects people of Northern European descent, but recent studies show that it also affects large numbers of people in Italy, China, Iran, India, and numerous other places thought to have few or no cases.
    Celiac disease is most often uncovered because people experience symptoms that lead them to get tests for antibodies to gluten. If these tests are positive, then the people usually get biopsy confirmation of their celiac disease. Once they adopt a gluten-free diet, they usually see gut healing, and major improvements in their symptoms. 
    CLASSIC CELIAC DISEASE SYMPTOMS
    Symptoms of celiac disease can range from the classic features, such as diarrhea, upset stomach, bloating, gas, weight loss, and malnutrition, among others.
    LESS OBVIOUS SYMPTOMS
    Celiac disease can often less obvious symptoms, such fatigue, vitamin and nutrient deficiencies, anemia, to name a few. Often, these symptoms are regarded as less obvious because they are not gastrointestinal in nature. You got that right, it is not uncommon for people with celiac disease to have few or no gastrointestinal symptoms. That makes spotting and connecting these seemingly unrelated and unclear celiac symptoms so important.
    NO SYMPTOMS
    Currently, most people diagnosed with celiac disease do not show symptoms, but are diagnosed on the basis of referral for elevated risk factors. 

    CELIAC DISEASE VS. GLUTEN INTOLERANCE
    Gluten intolerance is a generic term for people who have some sort of sensitivity to gluten. These people may or may not have celiac disease. Researchers generally agree that there is a condition called non-celiac gluten sensitivity. That term has largely replaced the term gluten-intolerance. What’s the difference between celiac disease and non-celiac gluten-sensitivity? 
    CELIAC DISEASE VS. NON-CELIAC GLUTEN SENSITIVITY (NCGS)
    Gluten triggers symptoms and immune reactions in people with celiac disease. Gluten can also trigger symptoms in some people with NCGS, but the similarities largely end there.

    There are four main differences between celiac disease and non-celiac gluten sensitivity:
    No Hereditary Link in NCGS
    Researchers know for certain that genetic heredity plays a major role in celiac disease. If a first-degree relative has celiac disease, then you have a statistically higher risk of carrying genetic markers DQ2 and/or DQ8, and of developing celiac disease yourself. NCGS is not known to be hereditary. Some research has shown certain genetic associations, such as some NCGS patients, but there is no proof that NCGS is hereditary. No Connection with Celiac-related Disorders
    Unlike celiac disease, NCGS is so far not associated with malabsorption, nutritional deficiencies, or a higher risk of autoimmune disorders or intestinal malignancies. No Immunological or Serological Markers
    People with celiac disease nearly always test positive for antibodies to gluten proteins. Researchers have, as yet, identified no such antobodies or serologic markers for NCGS. That means that, unlike with celiac disease, there are no telltale screening tests that can point to NCGS. Absence of Celiac Disease or Wheat Allergy
    Doctors diagnose NCGS only by excluding both celiac disease, an IgE-mediated allergy to wheat, and by the noting ongoing adverse symptoms associated with gluten consumption. WHAT ABOUT IRRITABLE BOWEL SYNDROME (IBS) AND IRRITABLE BOWEL DISEASE (IBD)?
    IBS and IBD are usually diagnosed in part by ruling out celiac disease. Many patients with irritable bowel syndrome are sensitive to gluten. Many experience celiac disease-like symptoms in reaction to wheat. However, patients with IBS generally show no gut damage, and do not test positive for antibodies to gliadin and other proteins as do people with celiac disease. Some IBS patients also suffer from NCGS.

    To add more confusion, many cases of IBS are, in fact, celiac disease in disguise.

    That said, people with IBS generally react to more than just wheat. People with NCGS generally react to wheat and not to other things, but that’s not always the case. Doctors generally try to rule out celiac disease before making a diagnosis of IBS or NCGS. 
    Crohn’s Disease and celiac disease share many common symptoms, though causes are different.  In Crohn’s disease, the immune system can cause disruption anywhere along the gastrointestinal tract, and a diagnosis of Crohn’s disease typically requires more diagnostic testing than does a celiac diagnosis.  
    Crohn’s treatment consists of changes to diet and possible surgery.  Up to 10% of Crohn's patients can have both of conditions, which suggests a genetic connection, and researchers continue to examine that connection.
    Is There a Connection Between Celiac Disease, Non-Celiac Gluten Sensitivity and Irritable Bowel Syndrome? Large Number of Irritable Bowel Syndrome Patients Sensitive To Gluten Some IBD Patients also Suffer from Non-Celiac Gluten Sensitivity Many Cases of IBS and Fibromyalgia Actually Celiac Disease in Disguise CELIAC DISEASE DIAGNOSIS
    Diagnosis of celiac disease can be difficult. 

    Perhaps because celiac disease presents clinically in such a variety of ways, proper diagnosis often takes years. A positive serological test for antibodies against tissue transglutaminase is considered a very strong diagnostic indicator, and a duodenal biopsy revealing villous atrophy is still considered by many to be the diagnostic gold standard. 
    But this idea is being questioned; some think the biopsy is unnecessary in the face of clear serological tests and obvious symptoms. Also, researchers are developing accurate and reliable ways to test for celiac disease even when patients are already avoiding wheat. In the past, patients needed to be consuming wheat to get an accurate test result. 
    Celiac disease can have numerous vague, or confusing symptoms that can make diagnosis difficult.  Celiac disease is commonly misdiagnosed by doctors. Read a Personal Story About Celiac Disease Diagnosis from the Founder of Celiac.com Currently, testing and biopsy still form the cornerstone of celiac diagnosis.
    TESTING
    There are several serologic (blood) tests available that screen for celiac disease antibodies, but the most commonly used is called a tTG-IgA test. If blood test results suggest celiac disease, your physician will recommend a biopsy of your small intestine to confirm the diagnosis.
    Testing is fairly simple and involves screening the patients blood for antigliadin (AGA) and endomysium antibodies (EmA), and/or doing a biopsy on the areas of the intestines mentioned above, which is still the standard for a formal diagnosis. Also, it is now possible to test people for celiac disease without making them concume wheat products.

    BIOPSY
    Until recently, biopsy confirmation of a positive gluten antibody test was the gold standard for celiac diagnosis. It still is, but things are changing fairly quickly. Children can now be accurately diagnosed for celiac disease without biopsy. Diagnosis based on level of TGA-IgA 10-fold or more the ULN, a positive result from the EMA tests in a second blood sample, and the presence of at least 1 symptom could avoid risks and costs of endoscopy for more than half the children with celiac disease worldwide.

    WHY A GLUTEN-FREE DIET?
    Currently the only effective, medically approved treatment for celiac disease is a strict gluten-free diet. Following a gluten-free diet relieves symptoms, promotes gut healing, and prevents nearly all celiac-related complications. 
    A gluten-free diet means avoiding all products that contain wheat, rye and barley, or any of their derivatives. This is a difficult task as there are many hidden sources of gluten found in the ingredients of many processed foods. Still, with effort, most people with celiac disease manage to make the transition. The vast majority of celiac disease patients who follow a gluten-free diet see symptom relief and experience gut healing within two years.
    For these reasons, a gluten-free diet remains the only effective, medically proven treatment for celiac disease.
    WHAT ABOUT ENZYMES, VACCINES, ETC.?
    There is currently no enzyme or vaccine that can replace a gluten-free diet for people with celiac disease.
    There are enzyme supplements currently available, such as AN-PEP, Latiglutetenase, GluteGuard, and KumaMax, which may help to mitigate accidental gluten ingestion by celiacs. KumaMax, has been shown to survive the stomach, and to break down gluten in the small intestine. Latiglutenase, formerly known as ALV003, is an enzyme therapy designed to be taken with meals. GluteGuard has been shown to significantly protect celiac patients from the serious symptoms they would normally experience after gluten ingestion. There are other enzymes, including those based on papaya enzymes.

    Additionally, there are many celiac disease drugs, enzymes, and therapies in various stages of development by pharmaceutical companies, including at least one vaccine that has received financial backing. At some point in the not too distant future there will likely be new treatments available for those who seek an alternative to a lifelong gluten-free diet. 

    For now though, there are no products on the market that can take the place of a gluten-free diet. Any enzyme or other treatment for celiac disease is intended to be used in conjunction with a gluten-free diet, not as a replacement.

    ASSOCIATED DISEASES
    The most common disorders associated with celiac disease are thyroid disease and Type 1 Diabetes, however, celiac disease is associated with many other conditions, including but not limited to the following autoimmune conditions:
    Type 1 Diabetes Mellitus: 2.4-16.4% Multiple Sclerosis (MS): 11% Hashimoto’s thyroiditis: 4-6% Autoimmune hepatitis: 6-15% Addison disease: 6% Arthritis: 1.5-7.5% Sjögren’s syndrome: 2-15% Idiopathic dilated cardiomyopathy: 5.7% IgA Nephropathy (Berger’s Disease): 3.6% Other celiac co-morditities include:
    Crohn’s Disease; Inflammatory Bowel Disease Chronic Pancreatitis Down Syndrome Irritable Bowel Syndrome (IBS) Lupus Multiple Sclerosis Primary Biliary Cirrhosis Primary Sclerosing Cholangitis Psoriasis Rheumatoid Arthritis Scleroderma Turner Syndrome Ulcerative Colitis; Inflammatory Bowel Disease Williams Syndrome Cancers:
    Non-Hodgkin lymphoma (intestinal and extra-intestinal, T- and B-cell types) Small intestinal adenocarcinoma Esophageal carcinoma Papillary thyroid cancer Melanoma CELIAC DISEASE REFERENCES:
    Celiac Disease Center, Columbia University
    Gluten Intolerance Group
    National Institutes of Health
    U.S. National Library of Medicine
    Mayo Clinic
    University of Chicago Celiac Disease Center