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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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    Wow thank you for the information regarding celiac disease and the underlying treatments behind it. It will definitely give people more awareness regarding their disease. Hope to read some more!

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    I am 74 and have suffered my whole life with misdiagnosis and prescriptions that didn't really help. At one point I thought I was lactose intolerant so I used lactose-free milk, which also was gluten-free, which I did not notice. It seemed to help but I never really got well. So now I am trying the gluten-free diet and it really works so I am gluten intolerant. There is no medication for this so I guess that is why it isn't a consideration for the patient. I feel great unless I accidentally get gluten. I really can't see blood test and biopsies at this point.

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    Thank you for all the information! I have chronic anemia and diarrhea, cramping, depression, and Hashimoto's disease. My doctor has always asked me if I'm of middle-European descent (which I am not) as to explain the constant anemia. I guess it never occured to him to test me for any cause for it!

     

    A friend of mine has celiac sprue and she mentioned some of the symptoms and how a gluten-free diet has helped tremendously. A coloscopy 5 years ago revealed I have diverticulosis (and 5 polyps, 2 were pre-cancerous) but no celiac disease. Recently, I took on a gluten-free diet to see if it helped and it did, thankfully! It must be gluten intolerance that I have. Your website is wonderful and gives extensive information and resources for gluten-free food. Thanks again.

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    I am 74 and have suffered my whole life with misdiagnosis and prescriptions that didn't really help. At one point I thought I was lactose intolerant so I used lactose-free milk, which also was gluten-free, which I did not notice. It seemed to help but I never really got well. So now I am trying the gluten-free diet and it really works so I am gluten intolerant. There is no medication for this so I guess that is why it isn't a consideration for the patient. I feel great unless I accidentally get gluten. I really can't see blood test and biopsies at this point.

    To Gail---I can't drink regular milk either but hadn't considered lactose-free milk. Some favorite recipes call for milk so I started using soy milk which gives a different taste I don't always care for. Thanks for the tip!

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    Thank you for all the information! I have chronic anemia and diarrhea, cramping, depression, and Hashimoto's disease. My doctor has always asked me if I'm of middle-European descent (which I am not) as to explain the constant anemia. I guess it never occured to him to test me for any cause for it!

     

    A friend of mine has celiac sprue and she mentioned some of the symptoms and how a gluten-free diet has helped tremendously. A coloscopy 5 years ago revealed I have diverticulosis (and 5 polyps, 2 were pre-cancerous) but no celiac disease. Recently, I took on a gluten-free diet to see if it helped and it did, thankfully! It must be gluten intolerance that I have. Your website is wonderful and gives extensive information and resources for gluten-free food. Thanks again.

    A colonoscopy is for the large intestines, but the endoscopy checks the small intestines, which is where celiac disease affects the villi, so I don't think a colonoscopy will catch celiac disease. I am so happy you found relief! The symptoms of celiac disease were so debilitating for my daughter. Her life has changed b/c of living gluten free. The hidden gluten is a bugger though. Wish companies were better about preventing cross contamination. Oh well.

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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?

    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.

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    I'm surprised no one has mentioned thyoid issues in association with celiac. So many times they are connected. I would say if you have hypothyroidism be sure to get tested for celiac disease. In our family, synthroid hides the symptoms of celiac... but we just recently learned that we're still supposed to eat gluten-free diets because the damage will still occur.

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    Excellent source of info... Does anyone with this illness suffer from severe depression?

    I have been suffering from depression and anxiety. My bowels have always been loose so I thought that it was normal. Now that I am doing gluten-free, I have realized that diarrhea all the time (that interrupts your life) is NOT normal. I almost feel weird because I am not going to the bathroom all the time. My headaches seem to have decreased, too.

     

    I wonder if there is a relation between gluten and depression... I feel that there may be..

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    To Gail---I can't drink regular milk either but hadn't considered lactose-free milk. Some favorite recipes call for milk so I started using soy milk which gives a different taste I don't always care for. Thanks for the tip!

    I don't drink cows' milk or soy milk. I found the almond milk good and it's unsweetened, vanilla flavored. Works for cooking too.

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    Excellent source of info... Does anyone with this illness suffer from severe depression?

    Yes, I was diagnosed with depression 4 years ago and celiac disease a few months ago. I've heard from many different doctors, gastroenterologists, dietitians etc that untreated celiac disease can cause depression.

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    I'm surprised no one has mentioned thyoid issues in association with celiac. So many times they are connected. I would say if you have hypothyroidism be sure to get tested for celiac disease. In our family, synthroid hides the symptoms of celiac... but we just recently learned that we're still supposed to eat gluten-free diets because the damage will still occur.

    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

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    I have been suffering from depression and anxiety. My bowels have always been loose so I thought that it was normal. Now that I am doing gluten-free, I have realized that diarrhea all the time (that interrupts your life) is NOT normal. I almost feel weird because I am not going to the bathroom all the time. My headaches seem to have decreased, too.

     

    I wonder if there is a relation between gluten and depression... I feel that there may be..

    Cynthia, I would have to say that there is a connection between gluten and depression. It makes your brain foggy and your overall feelings are sluggish too. When I know I've had gluten, I get on my treadmill and give her. It really helps!

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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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