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    Scott Adams

    What is Celiac Disease and the Gluten-Free Diet?

      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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    Ok I am sure I have this now. The medicine cannot seem to help level out my thyroid levels. With each blood test, it just seems to get worse. I'm going crazy between the nerve pain in my legs and no sleep or energy. Then add depression. Not good. The doctor, after asking him about it today, wanted me to try going gluten-free without testing first. But I heard it's better to be tested first because if you go gluten-free first, it can mess up later lab work. Has anyone else heard of this? Thank you so much, everyone

    Tina,

    Yes, it can affect the test. However, if you are not having an endoscopy, I would not bank on the blood test. I am from a smaller community of 25,000 people, and I know 3 people, along with myself, whose blood tests came back negative, but the scope showed blunting of the celia. The tests are very expensive just to have them say you are celiac. So if you think you are, just try it for 6 months to a year, and if you start to feel better, you know without spending all that money. For me, I could tell a different within a month. I also will add that the doctors found this when they were trying to solve all the problems I was having in other areas. My normal was not “normal†-Take time to talk about your stool, your pain in all parts of your body, your appetite, etc., and tell/ask them in depth what “normal†is. Good luck!

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    I was just diagnosed with Celiac disease a couple of days ago.

    I was diagnosed with Hashimoto disease a year ago. Although my blood work for thyroid was always within the normal range, my doctor decided to test it further and came to the conclusion that normal range was too high for me. I have had severe heartburn for a few years, which I was masking with acid reducers. No one seemed to question that until I made the appointment for the colonoscopy. My doctor highly recommended that I get an endoscopy also, which showed inflammation of the small intestine. The blood work revealed celiac disease. I have had a lot of the symptoms for several years: depression, weight gain, headaches, aches and pains, and heartburn. So now that I know what the "diagnosis" is, going gluten-free might be my resolve.

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    Hey, yes you can absolutely be putting on weight. My son was a large boy and as he started eating solid foods he ate large amounts. It was just amazing how much that boy could put away. He wasn't obese but you'd never think he was malnourished. And then once he was off the bottles and completely on real food, the constant diarhea of undigested food started and his weight gain slowed. Soon, his tummy hurt too much to eat a lot and it finally occurred to me one day to try taking him off wheat. The change was enormous: within 24 hours I had a healthy, happy little boy instead of a crazy, hyperactive whiny brat that kept waking up all night every night and barfing randomly at night sometimes.

    Thank you for sharing your experience. This describes my child so well, except that she refuses to stop the bottle to the point that she will starve herself rather than eat real food. The Doctors kept telling me she was fine, but the moment I cut out wheat, she started eating more real food, stopped throwing up regularly, and started sleeping better.

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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?

    YES! My grandmother wasn't diagnosed until she was nearly 80, and she was overweight most of her life.

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    Hi, great information, I have been told it is likely that I have celiac disease from my blood test, just waiting on my biopsy now! So can you have celiac and be putting on weight if anything?

    Yes. Weight loss is not one of the most prevalent symptoms of celiac disease. This is from my personal experience, as well as other research that I have done.

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    Well I just got diagnosed today with celiac disease. Oh joy. I have had the very tired symptoms, borderline anemic as my body ate up iron, vitamin D and B12 consistently. I have recently in the past 6 months lost 35+ pounds and I couldn't understand why after being overweight for about 10 years now. I have sleep apnea to boot. And I have severe cramps quite often after eating and even had blood and pain when excrementing. So to find out all these things are tied together save for the sleep apnea, but definitely couldn't sleep well, is finally answered. This condition is genetic and been latent I suppose for a while. Though, I was very skinny growing up, and not until about 10 years ago I started having weight gain I couldn't understand. Now it is all clear as to why, and I am happy that finally someone caught it. I had to undergo a endoscopy where they took biopsy samples in my large intestine/colon which confirmed the blood tests. Hope this was helpful.

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    Well I just got diagnosed today with celiac disease. Oh joy. I have had the very tired symptoms, borderline anemic as my body ate up iron, vitamin D and B12 consistently. I have recently in the past 6 months lost 35+ pounds and I couldn't understand why after being overweight for about 10 years now. I have sleep apnea to boot. And I have severe cramps quite often after eating and even had blood and pain when excrementing. So to find out all these things are tied together save for the sleep apnea, but definitely couldn't sleep well, is finally answered. This condition is genetic and been latent I suppose for a while. Though, I was very skinny growing up, and not until about 10 years ago I started having weight gain I couldn't understand. Now it is all clear as to why, and I am happy that finally someone caught it. I had to undergo a endoscopy where they took biopsy samples in my large intestine/colon which confirmed the blood tests. Hope this was helpful.

    Your sleep apnea is a part of the disease. I hadn't had a good night's sleep in years. Within a week of going gluten-free, I began to sleep better and better. It was the disturbance in my gut that woke me up and now I sleep hours straight through the night without waking up. That was one of the first things that impressed me. Now after almost two years gluten-free, I sleep well and therefore have so much more energy each day. I feel I have gained back about 10 years. I thought it was just what getting old felt like.

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    I'm 21 years old and finally went to the gastroenterologist a few days ago. Ever since I have been around 14 I've had horrible nausea, constipation and diarrhea, some stomach cramps and pains, and also fatigue continuously happening. When I was young I was diagnosed with IGA deficiency and was told I grew out of it. When I was around 14-17 I was diagnosed with very mild anemia, zinc deficiency, Reynauds syndrome, anxiety, and IBS. I have tried literally everything and I feel like my doctor has given up just saying it's my IBS and I just need to take Mirilax. Well I took it upon myself to make this appointment with the best gastro doctor near me. The first thing he did was comfort me because I just want to feel normal and I would cherish even just one day of feeling 100% perfect. Second he said celiac disease. I'm still waiting for the results but I'm convinced after reading up on it and what my doctor said. This site and reading all your personal stories are so comforting. I honestly thought I was the only one and it was a horrible feeling. If it turns out I do not have it and everything's still a mystery, I will not forget all the support on here. Thank you everyone!

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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.

    When I was diagnosed some 25 years ago by a rare physician that actually knew about celiac disease, he gave me a diet. The diet was written on an 8 1/2 by 11 inch page and said in very large letters, "Fresh meat, vegetables, fruit ~ nothing else!" He explained to me that I was ignorant of the issue (gluten) and that if I followed the fresh diet I could get better. I did! At that time, there was little labeling of processed foods about gluten and labeling today is little better for a very brittle celiac such as myself, so a fresh diet is SAFE and HEALTHFUL. Give it a try (at least until you become much more savvy about gluten).

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  • About Me

    In 1994 I was diagnosed with celiac disease, which led me to create Celiac.com in 1995. I created this site for a single purpose: To help as many people as possible with celiac disease get diagnosed so they can begin to live happy, healthy gluten-free lives. Celiac.com was the first site on the Internet dedicated solely to celiac disease. In 1998 I founded The Gluten-Free Mall, Your Special Diet Superstore!, and I am the co-author of the book Cereal Killers, and founder and publisher of Journal of Gluten Sensitivity.

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