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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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    DERMATITIS HERPETIFORMIS SUMMARY


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    Dermatitis Herpetiformis Summary

    A dermatologist who is experienced at recognizing dermatitis herpetiformis should do the biopsy. The biopsy is taken of one of the blisters or the skin at the edge of the lesion. The biopsy should not be taken from the lesion, but from the edge or just near the lesion - it can be misdiagnosed as herpes if taken from the lesion. An iodine patch can be used to bring about a blister. If one has dermatitis herpetiformis, a blister will form; if not, one does not have dermatitis herpetiformis. A positive dermatitis herpetiformis biopsy will show IgA antibodies. The lab should be looking for IgA deposits in a granular line at a specific location in the skin. Some dermatologists use an immunofluorescence method of examination. dermatitis herpetiformis usually appears where pressure is applied to the body, but can appear anywhere. If the biopsy is not taken correctly you can get an incorrect negative. This is a positive method of diagnoses.



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    Guest Cecilia McIntosh

    Posted

    It took over a year of blisters and splinters and 4 doctors, before I was diagnosed with Dermatitis Herpetaformis.

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    Guest Don ery

    Posted

    I have a skin condition that seems to act as a barometer. When my skin itches I find a product that I am consuming that is tainted.

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    Guest Cynthia

    Posted

    I am taking this article to my dermatologist with me, my 4 year old daughter has what I believe to be Dermatitis Herpetaformis and a count of 77 on her tTG. I am hoping that they can biopsy correctly. No one seems to take this seriously, unfortunately. Any great doctors in North Jersey?

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    Guest Thomas Niles Johnson

    Posted

    I am a fifty-seven year old male who has had symptoms of celiac disease since birth. When I was ten I began having symptoms of dermatitis herpetaformis but it wasn't until I was twenty-one and in the USAF that a service doctor diagnosed DH and prescribed Dapsone for it. The Dapsone was like a miracle for me at the time but I have now been on a gluten-free diet (thanks to my wife) for the last 25 years and I haven't taken Dapsone or had DH since. I have three children, one of whom shows signs of gluten intolerance. Thanks for the great website and all the good info. I wish there had been knowledge like this in 1960!

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    Guest Sadia

    Posted

    I am a fifty-seven year old male who has had symptoms of celiac disease since birth. When I was ten I began having symptoms of dermatitis herpetaformis but it wasn't until I was twenty-one and in the USAF that a service doctor diagnosed DH and prescribed Dapsone for it. The Dapsone was like a miracle for me at the time but I have now been on a gluten-free diet (thanks to my wife) for the last 25 years and I haven't taken Dapsone or had DH since. I have three children, one of whom shows signs of gluten intolerance. Thanks for the great website and all the good info. I wish there had been knowledge like this in 1960!

    What kind of gluten we should avoid and how? What do you eat mostly? Do we keep the skin moisturized or dry to avoid this skin problem to spread?

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    Guest Marie

    Posted

    I was diagnosed with the herpes virus in 1999 when an enormous rash and blisters developed on the back of my thigh. The culture was taken directly from the blisters. I have since discovered I have celiac and do my best to avoid any gluten, but when I do, the lesions always appear. I have always thought it was a misdiagnosis but I couldn't find any documentation to back up my theory. Thank you for this post, I can take this to my doctor and have the lesions properly diagnosed.

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    I suffered from an extremely itchy rash for 3 months and after 4 biopsies by a deramtologist that said I had anything from scabies to drug reactions I finally switched dermatologists and did some research of my own. I found this site and references to dermatitis herpetiformis, so I printed all of the information and went to my PCP asking to be tested for celiac. The nurse practitioner there literally laughed at me and said I shouldn't be trying to diagnose myself. I then took the information to the new dermatologist and the PA laughed at me. I requested the physician to come look at my rash and he immediately said I think you have dermatitis herpetiformis. I started on dapsone two days ago and have seen a great improvement in my rash. Being proactive about my care is the ONLY thing that provided me with the answer I was looking for. If you feel you have dermatitis herpetiformis, I would definitely urge you to do your research and keep looking until you an find someone to listen to you!

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    admin

    Iodine testing for DH: This is an old procedure used to create DH blisters. By applying a 30 percent solution of iodine as a patch, a DH outbreak can be created. This may be applicable in some patients when a biopsy is needed and no blisters are available.
    Immunofluorescence: The indirect immunofluorescence test shows that the serum of a patient contains specific antibodies that bind to different areas of the epithelium. The direct immunofluorescence tests by a skin biopsy shows a specific diagnosis pattern of DH. Traditionally this biopsy is obtained from the buttocks. If no outbreaks are observed in this area, the biopsy is recommended for another area where the itching is observed. DH Drugs: The common drugs used to initially control the blisters are: Dapsone, Sulfoxone, and Sulfapyridine. Each one has different advantages/disadvantages or availability in the treatment of DH. Dapsone changes the life span of red blood cells from an average of 120 days to 30 days. Dapsone is known for possible hematologic changes as a common side effect.

    Jefferson Adams
    Celiac.com 12/29/2011 - About one in 100 people in America has celiac disease, while about one in four of those will develop dermatitis herpetiformis Duhring, which occurs when celiac disease manifests cutaneously, in the skin. Dermatitis herpetiformis Duhring is uncommon in children, with only 5% of cases appearing in children younger than 7 years. Most often, it presents in people over forty.
    Making a proper clinical diagnosis of dermatitis herpetiformis Duhring, also known as Duhring’s disease, is challenging, and often requires the help of skin biopsy and direct immunofluorescence.
    To do this, clinicians should look for antibodies against gliadin, endomysium, and transglutaminase, said Dr. Magdalene A. Dohil, of the University of California, San Diego, at a seminar sponsored by Skin Disease Education Foundation (SDEF).
    The fact that manifestations of celiac disease in the mucous and skin may point to Duhring's disease was one of the more important aspects of Dr. Dohil's discussion, for people with celiac disease, and those treating them.
    Dr. Dohil noted that, at some point during the course of their disease, more than seven in ten people (74%) with celiac disease will have some type of skin manifestation. Most often, this skin manifestation occurs in the form of xerosis, which often triggers pruritus. Mucosal manifestations occur in 27% of patients, especially in patients with longer history of celiac disease.
    Dr. Dohil pointed out numerous diseases, disorders, syndromes, and structural epithelial defects with clear connections between skin and gut. For example, 60%-82% people with asymptomatic inflammatory bowel disease present with mucocutaneous findings that include skin tags, fistulas, fissures, or abscesses in the perianal and genital areas. In 25%-30% of cases, these will precede GI complaints. Dr. Dohil said.
    Overall, 6%-20% of all patients with inflammatory bowel disease develop oral lesions, but up to 80% of pediatric cases with Crohn’s disease and 41% with ulcerative colitis develop such lesions.
    Source:

    http://www.skinandallergynews.com/news/medical-dermatology/single-article/diseases-of-the-gut-may-present-cutaneously/57197f4ef7.html

    Jefferson Adams
    Celiac.com 11/13/2013 - Dermatitis herpetiformis is the cutaneous manifestation of celiac disease. Both celiac and dermatitis herpetiformis are diseases of gluten-sensitivity.
    People with celiac disease, even with asymptomatic forms, often experience reduced bone density from metabolic bone disease. This led scientists to ask if dermatitis herpetiformis results in bone loss as celiac disease does.
    However, there is very little data about bone density in patients with dermatitis herpetiformis, so that question remained unanswered.
    To find an answer, a team of researchers recently set out to compare bone mineral density (BMD) of people with celiac disease against bone mineral density for dermatitis herpetiformis patients.
    The research team included K. Lorinczy, M. Juhász, M. Csontos, B. Fekete, O. Terjék, P.L. Lakatos, P. Miheller, D. Kocsis, S. Kárpáti, Z. Tulassay, and T. Zágoni.
    The team looked at 34 people with celiac disease, 53 with dermatitis herpetiformis, and 42 healthy people as a control group. The average patient age was 38.0 +/- 12.1 for the celiac disease group, 32.18 +/- 14.95 for the dermatitis herpetiformis group, and 35.33 +/- 10.41 years for the healthy control group.
    For each group, the team used dual-energy X-ray absorptiometry to measure bone mineral density of the lumbar spine, the left femoral neck and radius.
    The team defined low bone density, osteopenia and osteoporosis as a body mass density (BMD) T-score between 0 and -1, between -1 and -2.5, and under -2.5, respectively.
    In the lumbar region, the team found decreased BMD in 49% of the patients with dermatitis herpetiformis, in 62% of the patients with celiac disease, and in 29% of healthy control subjects.
    Overall, they measured lower BMD at the lumbar region in people with dermatitis herpetiformis and celiac disease than in the healthy subjects (0.993 +/- 0.136 g/cm2 and 0.880 +/- 0.155 g/cm2 vs. 1.056 +/- 0.126 g/cm2; p < 0.01).
    There was no difference in density of bones composed of dominantly cortical compartment (femoral neck) in dermatitis herpetiformis and healthy subjects.
    This study shows that low bone mass is common in patients with dermatitis herpetiformis, and that bone mineral density for these patients is significantly lower in those bones with more trabecular than cortical composition.
    Source:
    Rev Esp Enferm Dig. 2013 Apr;105(4):187-193.

    Jefferson Adams
    Celiac.com 04/14/2014 - Exposure to stressful stimuli, such as inflammation, cause cells to up-regulate heat shock proteins (Hsp), which are highly conserved immunomodulatory molecules. Research points to Hsp involvement in numerous autoimmune diseases, including autoimmune bullous diseases and celiac disease.
    To better understand the role of Hsp in autoimmune bullous diseases, a research team conducted the first investigation of the humoral autoimmune response to Hsp40, Hsp60, Hsp70, and Hsp90 in patients with dermatitis herpetiformis (DH; n = 26), bullous pemphigoid (BP; n = 23), and pemphigus vulgaris (PV; n = 16), the first representing a cutaneous manifestation of celiac disease.
    The research team included Kasperkiewicz M1, Tukaj S, Gembicki AJ, Silló P, Görög A, Zillikens D, Kárpáti S. They are affiliated with the Department of Dermatology at the University of Lübeck in Lübeck, Germany.
    In patients with active BP and PV, serum levels of autoantibodies against these Hsp matched the healthy control subjects (n = 9-14), while circulating autoantibodies against Hsp60, Hsp70, and Hsp90 increased at the active disease stage of DH.
    Further analysis showed that in patients who adopt a gluten-free diet, these anti-Hsp autoantibodies decreased in relation to serum autoantibodies against epidermal and tissue transglutaminase during remission of skin lesions.
    Larger groups of patients must be studied to confirm these findings, but these results indicate that autoantibodies against Hsp60, Hsp70, and Hsp90 play a key role in the development and maintenance of DH, possibly also in the underlying celiac disease, and may be important in
    potentially undiscovered disease biomarkers.
    Source:
    Cell Stress Chaperones. 2014 Mar 19.

  • Recent Articles

    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.
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    Jefferson Adams
    Celiac.com 04/20/2018 - A digital media company and a label data company are teaming up to help major manufacturers target, reach and convert their desired shoppers based on dietary needs, such as gluten-free diet. The deal could bring synergy in emerging markets such as the gluten-free and allergen-free markets, which represent major growth sectors in the global food industry. 
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    Now, to be honest, some of those animals in question do perform a genuine service for those who need emotional support dogs, like veterans with PTSD.
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    Delta was the first to strike. As reported by the New York Times on January 19: “Effective March 1, Delta, the second largest US airline by passenger traffic, said it will require passengers seeking to fly with pets to present additional documents outlining the passenger’s need for the animal and proof of its training and vaccinations, 48 hours prior to the flight.… This comes in response to what the carrier said was a 150 percent increase in service and support animals — pets, often dogs, that accompany people with disabilities — carried onboard since 2015.… Delta said that it flies some 700 service animals a day. Among them, customers have attempted to fly with comfort turkeys, gliding possums, snakes, spiders, and other unusual pets.”
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    cnbc.com

    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