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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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    INCREASING INCIDENCE OF CELIAC DISEASE IN A NORTH AMERICAN POPULATION


    Jefferson Adams

    Celiac.com 04/29/2013 - In an effort to determine the accuracy of claims that rates of celiac disease are on the rise, a team of researchers recently examined rates of celiac disease in a well-defined US county.


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    Photo: CC--Spatial MongrelThe research team included Jonas F. Ludvigsson, Alberto Rubio-Tapia, Carol T. van Dyke, L. Joseph Melton, Alan R. Zinsmeister, Brian D. Lahr and Joseph A. Murray. They are variously affiliated with the Division of Gastroenterology and Hepatology in the Departments of Medicine and Immunology at the College of Medicine of the Mayo Clinic in Rochester, Minnesota, USA, and the Department of Pediatrics of Örebro University Hospital in Örebro, Sweden.

    For their population-based study, the team used medical, histopathology, and celiac disease serology records from the Rochester Epidemiology Project to identify all new cases of celiac disease in Olmsted County, Minnesota, USA since 2000.

    They then calculated age- and sex-specific incidence rates for celiac disease and adjusted those rates to the US white 2000 population. The team also assessed clinical presentation of celiac disease upon diagnosis.

    Overall, they found 249 cases of celiac disease, 92 cases in men and 157 cases in women, in Olmsted County, between 2000 and 2010. Average patient age was 37.9 years. Once adjusted for age and sex, the overall rate of celiac disease within the time studied was 17.4 (95% confidence interval (CI)=15.2–19.6) per 100,000 person-years. That means an increase of over six percent; from 11.1 per 100,000 person-years (95% CI=6.8–15.5) in 2000–2001. The data show the increase leveling off after 2004.

    The data also show that cases of celiac disease with classical symptoms of diarrhea and weight loss decreased over time between 2000 and 2010 (P=0.044).

    Overall, rates of celiac disease have continued to rise over the last decade in this North-American population. This study supports the observation that celiac disease rates in America are, in fact, going up.

    Source:


    Image Caption: Photo: CC--Spatial Mongrel
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    Guest Diana delGiudice

    Posted

    You should check out Rutland, Vermont and the surrounding area; also your age can be off by a mile! I am 65 and my sister-in-law is 57. We both have this disease as well as many other friends we know. Gluten-free foods are priced out of sight, except deli meats and we are heath food gals (not into deli meats). Personally, I don't even eat breads! It would be nice to have gluten-free stores and updated info. Get with the times! More doctors are needed for this disease and stop with the IBS crap!

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    Guest Carlena Milligan

    Posted

    Yesterday I heard a comment: a father of a friend's doctor told him he was a celiac and good luck. I think he was from N.Y. His daughter is trying to help him. I think stores are better here because Jefferson Adams lives in Santa Rosa.

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    Guest ACurtis

    Posted

    I agree. The price of organics and healthy foods as well as gluten-free and/or allergen-free are such that it is very difficult for one person to eat well to overcome sickness and/or maintain health. Now multiply that by 3--there are 3 people in my family who have gluten and soy intolerance as well as casein allergy--and buying groceries is the single most expensive thing we do. We spend more on our monthly groceries than we do on our bills, like our car, our equiline, our car insurance, our heating bill, our cable/phone bill--in fact, the only thing we pay more on is our mortgage! Prices for organic and allergen-free foods have GOT to start coming down so that regular people can afford them. At the moment, we give up any hopes of taking a vacation so that we can eat well. That doesn't make our teenager very happy.

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    Guest Donnie

    Posted

    There were many close and not so close relatives on both my mom's and dad's sides of the family who had symptoms of celiac disease and some had other autoimmune diseases, going back several generations. I was diagnosed with celiac disease a few years ago. My niece was diagnosed with it last year. And we both have Hashimoto's hypothyroidism. We were the only two who were ever tested for celiac disease. There are a lot of our relatives who have autoimmune thyroid disease, among other ones linked to celiac disease. I believe celiac disease was much more common than thought, but wasn't diagnosed. I had the classic symptoms for as long as I can remember, but no doctor ever suggested celiac disease. I had a hard time even getting a doctor to test me, and had to change doctors to get tested for it. I've been gluten-free since diagnosis.

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    Guest Doris Fox

    Posted

    Would like to thank Diana DelGiudice about the age, for I was found to have celiac disease when I was 66 after suffering a year and losing weight till I got down to 85 lbs. Also the prices for the food it is just completely out of sight no one should have to give almost $6.00 for a loaf of bread that has only 16 slices it in. That is only one example.

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    Guest Susie

    Posted

    I don't think the incidence is increasing. I think more are becoming aware that their IBS isn't really IBS. I had symptoms since birth but didn't find out it was celiac disease until I was in my 40's. I was never diagnosed with IBS. I live in New York State and the doctors/hospitals are poorly educated on celiac disease. I will now be facing a new challenge with this disease. I am joining the unemployed in this country on May 16th. Since I have to travel at least 45 minutes one way to get a good variety of gluten-free foods, and gas prices being so high, it looks like it's local fruit/veggies for me!

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    Guest erika

    Posted

    I agree. The price of organics and healthy foods as well as gluten-free and/or allergen-free are such that it is very difficult for one person to eat well to overcome sickness and/or maintain health. Now multiply that by 3--there are 3 people in my family who have gluten and soy intolerance as well as casein allergy--and buying groceries is the single most expensive thing we do. We spend more on our monthly groceries than we do on our bills, like our car, our equiline, our car insurance, our heating bill, our cable/phone bill--in fact, the only thing we pay more on is our mortgage! Prices for organic and allergen-free foods have GOT to start coming down so that regular people can afford them. At the moment, we give up any hopes of taking a vacation so that we can eat well. That doesn't make our teenager very happy.

    If you save your receipts, you can get tax deductions for buying gluten-free food.

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  • Related Articles

    admin
    Celiac.com 12/04/2009 - Yes, 'tis the holiday season again, and back online for 2009 are the Controllable Christmas Lights for Celiac Disease:
    http://www.komar.org/cgi-bin/christmas_webcam
    Once again, three live webcams and X10 technology allows web surfers to not only view the action, but also *control* 20,000+ lights. Heck, you can even inflate/deflate the giant 12' Santa, Elmo, Frosty Family,
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    The website is totally free (and totally fun) and is one of my zany ways of raising awareness & soliciting donations for Celiac Disease:
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    So surf on by, tell your friends, blog about it, spread the word, etc. Merry Christmas and HO-HO-HO! 
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    P.S. One notable event in 2008 was winning the nationwide Kentucky Fried Chicken Christmas Lights contest which had a first prize of $1,000 (donated to Celiac Disease Research) plus free KFC (extra crispy buckets - BURP!) for a year - as Fox News put it: "Clark Griswold move over - a Lafayette family can now officially lay claim to the best Christmas Lights Display in the entire country" (my wife would say most tackiest.


    Destiny Stone
    Celiac.com 08/11/2010 - New studies from the United States, Europe and other Countries around the world indicate that the commonness of celiac disease has dramatically increased  in the last decade, possibly as much as four-times the amount seen in the 1950's. Most current studies show that celiac disease is prevalent in at least 1% of the general population.
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    While there are many documented statistics on diagnosed celiacs, there is new research revolving around “latent celiac disease”, or gluten sensitivity.  According to a study by Dr. Ludvigsson's team and as outlined in the Journal of the American Medical Association, latent celiac disease is defined by someone who has a "normal small intestinal mucosa but positive celiac disease serology," and is estimated to be prevalent in at least 1 in 1,000 people worldwide.
    According to Dr. Ludvigsson's team mortality rates are higher for those with celiac disease and latent celiac disease than it is in the general population. Ten out of 1,000 people with celiac disease will die in a years time, compared to  approximately 7 in 1,000 people without the disease. Although, Dr. Ludvigsson emphasizes that while mortality and increased risk for other disorders are raised for those with celiac and latent celiac disease, "the absolute risk increase is very small."
    Unfortunately,  celiac disease often goes undetected. In most countries at least 2/3 of people with celiac disease are undiagnosed. The reason for the high number of undiagnosed celiac's is because celiac symptoms vary widely from each other and can present in several ways. They can be asymptomatic (without symptoms), or classic symptomatic celiac (diarrhea, weight loss, failure to thrive, malabsorbtion, etc.), or non-traditional (osteoporosis, malignancy, depression etc.), making it difficult to accurately diagnose celiac disease. Many autoimmune disorders, specifically, autoimmune liver disease, thyroid disease, type 1 diabetes, and Addison's disease can be an indicator of celiac disease, and according to Dr. Ludvigsson, doctors should be evaluating patients for celiac disease for a variety of symptoms and disorders. 
    There are alternative treatment strategies for gluten sensitivities currently underway, but to date a gluten-free diet is the only effective treatment for celiac disease. As such, Dr. Ludvigsson urges health practitioners to emphasize to their patients the importance of strict adherence to the gluten-free diet. Dr. Ludvigsson also stresses the significance of medical follow-up for celiac patients.
    Source:

    MedScape Today

    Diana Gitig Ph.D.
    Celiac.com 06/06/2011 - The interplay among the different immune cells mediating intestinal inflammation in celiac disease is complicated indeed. A subset of T regulatory (Treg) cells that express the Foxp3 protein are present in higher numbers in the intestines of patients with active celiac disease than in healthy controls. Treg cells act to suppress the immune system, providing tolerance to self-antigens. A recent report in the American Journal of Gastroenterology demonstrates that these cells proliferate upon the ingestion of gluten in order to suppress an overactive inflammatory response, but that their suppression is in turn suppressed by interleukin-15.
    First they confirmed that there is in fact increased expression of Foxp3+ cells in the intestinal mucosa of untreated celiac patients; happily, they write that "no significant differences were noted in the number of Foxp3+ cells in biopsy samples of treated celiac disease in comparison with biopsy samples of non-celiac disease controls." Next, they used an in vitro gliadin challenge system - no celiac patients were harmed during the course of this study! - to see if the increase in this cell population was dependent on gliadin, and it was. T cells are so named because they are made in the thymus; this demonstration that they can originate in the small intestine lamina propria is interesting. Treg cells are generally immunosuppressive, and the Treg cells isolated from celiac guts demonstrated this immunosuppressive ability in vitro. So the researchers wondered: why is there still so much inflammation in untreated celiac disease patients? They found that the cytokine IL-15 could suppress the proliferation of Treg cells, and completely shut down their ability to produce interferon gamma (IFN- γ ). This is at least partially because Treg cells from celiac patients turn out to have a significantly higher surface density of receptors for IL-15 than Treg cells from healthy controls, rendering them more sensitive to IL-15's effects.
    Zanzi et al bolstered their findings by achieving the same results using two independent experimental methods. It is not yet clear how IL-15 impairs the suppressive activity of Treg cells. But these scientists are actively working on it.
    Source:

    Am J Gastroenterol advance online publication, 5 April 2011; doi: 10.1038/ajg.2011.80

    Jefferson Adams
    Celiac.com 10/29/2013 - In an effort to get a better understanding of the prevalence of celiac disease in Germany, a team of researchers recently conducted a randomly selected population sample.
    The research team included W. Kratzer, M. Kibele, A. Akinli, M. Porzner, B.O. Boehm, W. Koenig, S. Oeztuerk, R.A. Mason, R. Mao, and M.H. Haenle. They are affiliated with the Department of Internal Medicine I at the University Hospital Ulm in Ulm, Germany.
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    Then, for each celiac-positive subject, the team conducted a second follow-up by telephone.
    They found antibody tests consistent with celiac disease in eight subjects, corresponding to an overall prevalence of 1:270 (8/2157).
    Celiac prevalence among women was 1:224, while it was 1:518 in men. The team found classic celiac symptoms in 62.5% of subjects, atypical celiac disease in 25.0%, and transient celiac disease in 12.5%.
    They found three cases of false-negative test results. This yields a sensitivity and specificity of 62.5% and 50.0%, respectively, for tissue transglutaminase immunoglobulin-A antibody; of 62.5% and 71.4% respectively, for endomysium antibody; and of 62.5% and 71.4%, respectively, for antigliadin antibody.
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    World J Gastroenterol. 2013 May 7;19(17):2612-20. doi: 10.3748/wjg.v19.i17.2612.

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    Jefferson Adams
    Celiac.com 04/18/2018 - To the relief of many bewildered passengers and crew, no more comfort turkeys, geese, possums or other questionable pets will be flying on Delta or United without meeting the airlines' strict new requirements for service animals.
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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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    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