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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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    NON-CLASSICAL SYMPTOMS COMMON FOR VAST MAJORITY WITH CELIAC DISEASE


    Jefferson Adams

    Celiac.com 12/26/2014 - Celiac disease can have such a wide-ranging number of symptoms, ranging over so many parts of the body, that it can be hard for doctors seeking to make a diagnosis to even suspect celiac disease as an underlying cause in the first place.


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    Photo: CC--liviana1992A team of researchers set out to better understand the characteristics of celiac disease by looking at the findings in a large number of celiacs diagnosed in a single referral center, and to using clear definitions of the clinical, serological and histopathological aspects of celiac disease to get a better picture of how the disease presents itself.

    The research team included Umberto Volta, Giacomo Caio, Vincenzo Stanghellini and Roberto De Giorgio of the Department of Medical and Surgical Sciences at the University of Bologna’s S. Orsola-Malpighi Hospital, in Bologna, Italy.

    For their study, their team looked at data on celiac patients admitted to S. Orsola-Malpighi Hospital from January 1998 to December 2012. They found a total of 770 patients ranging from 18 to 78 years, averaging 36 years old. A total of 599 patients were female.

    The team broke celiac disease down into three types: The first type, classical, in which patients present with malabsorption syndrome. The second type, non-classical, in which patients experience extraintestinal and/or gastrointestinal symptoms other than diarrhea. The third type, subclinical, with no visible symptoms.

    The team evaluated patient serology, duodenal histology, comorbidities, response to gluten-free diet and complications.

    A total of 610 patients (79%) showed clear physical symptoms when they were diagnosed, while 160 celiacs showed a subclinical phenotype.

    In the symptomatic group 66% of celiacs were non-classical, that is, they experienced extraintestinal and/or gastrointestinal symptoms other than diarrhea.

    Only 34% of patients in the symptomatic group showed classical malabsorption syndrome.

    The team found that just 27% of the non-classically symptomatic group complained of diarrhea, while other gastrointestinal manifestations included bloating (20%), aphthous stomatitis (18%), alternating bowel habit (15%), constipation (13%) and gastroesophageal reflux disease (12%). Extraintestinal manifestations included osteopenia/osteoporosis (52%), anemia (34%), cryptogenic hypertransaminasemia (29%) and recurrent miscarriages (12%).

    Positivity for IgA tissue transglutaminase antibodies was detected in 97%. Th steam found villous atrophy in 87%, while 13% had minor lesions consistent with potential celiac disease.

    A large proportion of patients showed autoimmune disorders, such as autoimmune thyroiditis (26.3%), dermatitis herpetiformis (4%) and diabetes mellitus type 1 (3%). Complicated celiac disease was very rare.

    This study demonstrates that the clinical profile of celiac disease has changed over time, and now features much more non-classical and subclinical phenotypes.

    Source:


    Image Caption: Photo: CC--liviana1992
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    I found this article to lift the roof off of my personal experience. The definitions of technical/medical language were quite helpful. Still yet, there were moments when the reading level left me feeling as if I was reading from a medical journal.

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    Guest Sue Parks

    Posted

    Thank you for all of your excellent articles. I love the data you use to prove/disprove theories about celiac. In my case, I was 50 before I was diagnosed-never had diarrhea and, sadly, my doctor of many years felt that was the must needed symptom to diagnose. By the time I was diagnosed, I had a complete stricture, terrible ulcers, skin lesions and full blown lupus and sjogrens. And what did I do when my stomach was a mess-eat a bowl of cereal as I was told to eat a bland diet. Unfortunately, I found bread alone can kill you slowly and painfully. I lived a life of silent suffering always thinking it was in my head until I finally put my food down when I could not even swallow water. We have to bring light to this terrible disease and malfunction. Thank you for doing so!

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    Once again Jefferson, you come through with an interesting and concise article. Thanks so much for your continuing research.

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    Guest Gloria Clemons

    Posted

    I was told 2 years ago that I had celiac disease after a colonoscopy. I had no outward symptoms so I did nothing about it. I did have a very low B12 count and the doctor was unable to control my iron levels so he ordered another colonoscopy and again I was told I had celiac disease. I also peripheral nuropathy. So I decided to do the gluten free diet about 3 months ago. I can't see any change yet but I have lost about 7 lbs. I have not had any trouble giving up bread since I didn't eat that much anyway. But I do miss pizza. I am doing this in hopes that it will help the neuropathy somehow. So far no change. I also have spinal stenosis. My doctor had never taken celiac seriously.

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    Was I missing something or was vomiting not listed as a "non-classical" symptom?

    Excellent point! I ended up with this happening as I got to the point of barely being able to eat anymore... I think they didn't consider what happens when an un-diagnosed person gets near the point of an emergency room visit...

    What about the smell of gluten products when in a severe reactive state? Anyone have that?

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    Guest maggielynne

    Posted

    Nine months ago after I connected the dots (and being told 5 years ago after a colonoscopy that I did not have celiac disease) I had genetic testing. It found that I had a gluten sensitivity gene from one parent and a gluten sensitivity/celiac gene from the other parent. The dots I connected were that I had a blistery rash on and off for 26 years and finally connected it to every time I ate wheat. My grandmother died of non-alcoholic cirrhosis of the liver and my brother was diagnosed at 16 with type 1 diabetes (52 years ago). After I was diagnosed my brother asked his endocrinologist about celiac and was told he was too old and he didn't have the symptoms... vomiting, etc. The doctor did not even suggest at least having a blood test.

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    Guest Christina

    Posted

    Nine months ago after I connected the dots (and being told 5 years ago after a colonoscopy that I did not have celiac disease) I had genetic testing. It found that I had a gluten sensitivity gene from one parent and a gluten sensitivity/celiac gene from the other parent. The dots I connected were that I had a blistery rash on and off for 26 years and finally connected it to every time I ate wheat. My grandmother died of non-alcoholic cirrhosis of the liver and my brother was diagnosed at 16 with type 1 diabetes (52 years ago). After I was diagnosed my brother asked his endocrinologist about celiac and was told he was too old and he didn't have the symptoms... vomiting, etc. The doctor did not even suggest at least having a blood test.

    Tell your brother to RUN to a new doctor.

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    Brilliant article - I have never been diagnosed as 'coeliac' but have suffered a massively curtailed life with chronic illness. Being repeatedly dismissed by doctors telling me I wasn't coeliac because I don't have classic villi destruction. However, I echo so much of what every ne else is saying. In the end I was so desperate, unable to walk and in pain I went on a gluten free diet and had an instant health improvement. Unfortunately having never been treated and suffering obvious symptoms for 40 years my health was badly damaged and will never be fully well again. I do have a consultant now who understands my non coeliac gluten sensitivity.

     

    Maxine - yes I do 'smell' gluten if I open a cupboard with any gluten containing food in it. I am very ill indeed if I accidentally ingest any. I was almost am accident and emergency admission in an ambulance at one point.

     

    This is a serious health issue and most doctors just don't believe it or get how ill people are with it

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    Guest Miguel Rosado

    Posted

    Brilliant article - I have never been diagnosed as 'coeliac' but have suffered a massively curtailed life with chronic illness. Being repeatedly dismissed by doctors telling me I wasn't coeliac because I don't have classic villi destruction. However, I echo so much of what every ne else is saying. In the end I was so desperate, unable to walk and in pain I went on a gluten free diet and had an instant health improvement. Unfortunately having never been treated and suffering obvious symptoms for 40 years my health was badly damaged and will never be fully well again. I do have a consultant now who understands my non coeliac gluten sensitivity.

     

    Maxine - yes I do 'smell' gluten if I open a cupboard with any gluten containing food in it. I am very ill indeed if I accidentally ingest any. I was almost am accident and emergency admission in an ambulance at one point.

     

    This is a serious health issue and most doctors just don't believe it or get how ill people are with it

    I am not crazy! I am not the only one claiming a to have gluten reaction from smelling gluten! so, there is something to it.... I have the same gene problem than Maggielynne could be the same for you John.

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    I was told 2 years ago that I had celiac disease after a colonoscopy. I had no outward symptoms so I did nothing about it. I did have a very low B12 count and the doctor was unable to control my iron levels so he ordered another colonoscopy and again I was told I had celiac disease. I also peripheral nuropathy. So I decided to do the gluten free diet about 3 months ago. I can't see any change yet but I have lost about 7 lbs. I have not had any trouble giving up bread since I didn't eat that much anyway. But I do miss pizza. I am doing this in hopes that it will help the neuropathy somehow. So far no change. I also have spinal stenosis. My doctor had never taken celiac seriously.

    I had the neuropathy too and found it was caused directly by Vitamin B12 deficiency. It got a lot better after I took 1000 mcg of B12 sublingually (sublingual lozenges provide direct absorption through oral tissues, not going through the impaired digestive system) for several months.

     

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    admin
    Celiac.com 09/29/2003 - The results of a study published in the September edition of American Journal of Gastroenterology indicate that women with treated celiac disease suffer twice as many gastrointestinal symptoms than do their male counterparts, and that men with treated celiac disease suffered no more GI symptoms than did the normal population. More studies need to be done, however, to determine why male celiacs seem to respond better to treatment than females. Some follow-up work has already been done on this topic. -Scott
    Here is the abstract:


    Am J Gastroenterol. 2003 Sep;98(9):2023-6.
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    Jefferson Adams
    Celiac.com 03/18/2010 - An international research team recently conducted an assessment of the nutritional status of children with newly diagnosed celiac disease, and compared the results to a group of matched control subjects.
    The team included B. Aurangzeb, S.T. Leach, D. A. Lemberg, and A. S. Day. They are associated variously with the Children's Hospital, Pakistan Institute of Medical Sciences in Islamabad, Pakistan, the Department of Paediatrics at the University of Otago in Christchurch, New Zealand, the School of Women's and Children's Health at the University of New South Wales, and the Department of Gastroenterology at Sydney Children's Hospital in Randwick, both in Sydney, Australia.
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    Acta Pædiatrica; 19 Feb 2010

    Destiny Stone
    Celiac.com 05/21/2010 - Celiac disease is a genetic, permanent auto-immune disease with a variety of symptoms which, when treated with a gluten-free diet, usually subside. While clinical presentation is variable, most patients that are treated for abdominal pain do not have celiac disease. It is therefore important to accurately diagnose celiac disease in patients exhibiting abdominal pain, without unnecessarily testing  patients that do not have celiac disease.
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    The conclusive results showed that among adult patients exhibiting abdominal symptoms, “IgA antitissue transglutaminase antibodies and IgA antiendomysial antibodies have high sensitivity and specificity for diagnosing celiac disease”.
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    JAMA. 2010 May 5;303(17):1738-46. Review.

    Jefferson Adams
    Celiac.com 10/20/2014 - Researchers don’t have much data on rates of celiac disease in patients with autoimmune hepatitis (AIH). To better understand any connections between the two conditions, a Dutch research team recently set out to examine the rates of celiac disease in patients with autoimmune hepatitis.
    Specifically, the team set out to investigate the relationship between AIH and celiac disease by assessing the prevalence of IgA tissue antitransglutaminase antibodies (TGA) and antiendomysium antibodies (EMA) in a large group of AIH patients.
    The research team N.M. van Gerven, S.F. Bakker, Y.S. de Boer, B.I. Witte, H. Bontkes, C.M. van Nieuwkerk, C.J Mulder, G. Bouma; and the Dutch AIH working group. They are variously affiliated with the Departments of Gastroenterology and Hepatology, Epidemiology and Biostatistics, and Medical Immunology at the VU University Medical Centre in Amsterdam, The Netherlands.
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    Discounting patients with either a primary biliary cirrhosis or primary sclerosing cholangitis overlap, the team found celiac disease in 11 (2.8%) AIH patients. This is the largest serological study to examine connections between AIH and celiac disease, and shows that patients with AIH have rates of celiac disease that are higher than those of the general population, but not as high as some studies have suggested.
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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