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  • Scott Adams
    Scott Adams

    What is Celiac Disease and the Gluten-Free Diet?

    Reviewed and edited by a celiac disease expert.

      Symptoms of celiac disease can range from the classic features, such as diarrhea, upset stomach, bloating, gas, weight loss, and malnutrition, to no symptoms at all, and everything in between.


    Caption: Image: CC—Ed Uthman

    WHAT IS CELIAC DISEASE?
    Celiac disease is an autoimmune condition that affects around 1.4% of the population (91.2 million people worldwide, and 3.9 million in the U.S.A.). 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:

    1. 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.
    2. 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.
    3. 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.
    4. 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.

    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. 

    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:

    Edited by Scott Adams


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    I appreciate the info - but boy is it hard to go gluten free. I am of Northern European descent which my doctor told me was the reason for my tendency to be anemic. Now I have a good reason for my anemia and bloating.

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    I really had no knowledge of what celiac disease was and now feel much more informed. I found out yesterday that my granddaughter might have it so I called my cousin who informed me that her sister's one son has it and her sister is a carrier. This article helped me to understand the disease a lot better.

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    I just found out I had celiac about 5 days ago! I had symptoms of bloating and really bad cramps whenever I ate!! I couldn't take it any more and my doctor gave me a stomach scope and biopsy of my small intestine. It came back positive. This web site really helped me out with what the disease is and what to watch out for. Who new that Gluten could be hidden everywhere (sauces, hot dogs, Ect.) Bummed out that I can't have certain things anymore, but once I dabble and experiment with my new way of life I'm sure I'll do just fine, If not be a healthier person because of it.

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    All my life I have been so ill, sick all the time, after many doctors we moved away and my new doctor, she's wonderful diagnosed me with celiac, not IBS. for the 1st time in years I ate and didn't buckle over in pain, it feels wonderful to eat gluten free foods, it only too 43 yrs but I'm getting better now...

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    One of my professors got diagnosed with it a little while back. This helps me understand what he could have gone through. He said that when he ate gluten, he felt really bad. Now I understand what that "really bad" was. Thank you!

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    I'm scared that I might have celiac due to the consistency of the symptoms being mine in this list.. I have gotten blood work done and I'm just waiting for the tests to come back.. hopefully negative. I eat gluten products on a daily basis and I don't think I can live without it which is why I'm quite terrified currently. my fingers are crossed..

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    I don't trust doctors. At least the ones I met so far, but anyway, I have been diagnosed with IBS at age 16, and have had some episodes of constipation, diarrhea and stuff since, plus constant bloating problems, but now, for a few days straight, I'm getting loose stools no matter what I eat.

    I also had some pretty severe anemia when I last tested, about 5 years ago...at 17, but, anyway, I have been wondering if it is possible to have this disease and be obese?

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    I'm scared that I might have celiac due to the consistency of the symptoms being mine in this list.. I have gotten blood work done and I'm just waiting for the tests to come back.. hopefully negative. I eat gluten products on a daily basis and I don't think I can live without it which is why I'm quite terrified currently. my fingers are crossed..

    I have too much gluten free food. Two Brothers Market (owners have celiac) provide everything I need for cooking gourmet meals. Being able to eat hot dogs, hamburgers, pizza, lasagna, tacos, etc. make me feel like a normal person. Set your mind, gluten food is poison. Plan weekly meals! It will get better. It has taken me 3 months to learn how to cook buns, bread, and noodles all gluten-free.

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    I am new to the celiac family, and was only diagnosed 3 months ago. I must say, this is a great article and helped me a lot. I'm still in the stages of "what can I eat". I restrict myself to things labeled "gluten free" and go to a lot of the gluten-free websites that specialize in and sell gluten-free foods. I feel so much better and my friends and co-workers say they can see a huge difference in my energy and coloring. I went for years with small symptoms I chalked up to "just getting older" and then a few months ago it hit me all at once. Thought I may have the flu, but after 2 hospital stays and a biopsy, I had my diagnosis. Stay strong folks, this is a lifetime thing, but well worth the fight to stay healthy, and alive!

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    My 17 month old daughter is 18 lbs. and got her blood work done and her antigluten was really high ant that is what is causing her to gain weight very slowly, the doctors said she might have celiac disease so they are running a lot of test before they say if it is really celiac. Her nutritionist had her go on a gluten free diet right away and it's not that bad and it was really easy to to rearrange the pantry, but it very expensive.

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    Migraines should be added to the list of symptoms. At least 10-15 people I have talked to with this suffer from severe migraines and I have only talked to about 20 people with this disease thus far!

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    Thanks for all the information. I have known for a year that I have Celiac but still have trouble with the hidden gluten. My headaches have disappeared, and I am not anemic anymore but sometimes fall back because of not knowing what is in some of the food. No restaurants take it serious if you ask if there is any gluten in the food.

    PF Changs has a small menu that is gluten free. But I have noticed that the majority of restaurants don't cater to people with celiac disease.

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  • About Me

    Celiac.com's Founder and CEO, Scott was diagnosed with celiac disease  in 1994, and, due to the nearly total lack of information available at that time, was forced to become an expert on the disease in order to recover. Scott launched the site that later became Celiac.com in 1995 "To help as many people as possible with celiac disease get diagnosed so they can begin to live happy, healthy gluten-free lives."  In 1998 he founded The Gluten-Free Mall which he sold in 2014. He is co-author of the book Cereal Killers, and founder and publisher of Journal of Gluten Sensitivity.

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