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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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    WHAT IS THE PROBABILITY OF FALSE POSITIVE AND FALSE NEGATIVE RESULTS FROM THE SEROLOGICAL TESTS?**


    admin

    Vijay Kumar, M.D., Research Associate Professor at the University of Buffalo and President and Director of IMMCO Diagnostics: The three serological tests that are used for diagnosing celiac disease are:

    • Anti-endomysial antibody (EMA)
    • Anti-reticulin antibody (ARA)
    • Anti-gliadin antibody (AGA)


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    Each of these three tests provide a certain degree of reliability for diagnosing celiac disease. Of these, endomysial antibody is the most specific test. The following table is taken from our studies (Lerner, Kumar, Iancu, Immunological diagnosis of childhood coeliac disease: comparison between antigliadin, antireticulin and antiendomysial antibodies).

      % of Sensitivity % of Specificity Predictive Value % Pos Predictive Value % Neg
    EMA 97% 98% 97% 98%
    ARA 65% 100% 100% 72%
    IgG AGA 88% 92% 88% 92%
    IgA AGA 52% 94% 87% 74%

     

    The following definitions related to sensitivity, specificity, positive and negative predictive values may help:

    Sensitivity is the probability of a positive test result in a patient with disease. Specificity is the probability of negative test result in a patient without disease. Positive predictive value is the probability of disease in a patient with positive test result. Negative predictive value is the probability of no disease in a patient with negative test result.

    Karoly Horvath, M.D., Ph.D., Associate Professor of Pediatrics; Director, Peds GI & Nutrition Laboratory; University of Maryland at Baltimore: The summary below shows the results of the main serological tests based on several publications including 388 patients with celiac disease, and 771 healthy subjects.

     

    SENSITIVITY- the proportion of subjects with the disease who have a positive test. It indicates how good a test is at identifying the diseased:

      Percentage of - IgA AGA Percentage of - IgG AGA Percentage of - IgA EMA
    Average 78% 79% 97%
    Range 46-100% 57-94% 89-100%



    SPECIFICITY- the proportion of subjects without the disease who have a negative test. It indicates how good a test is at identifying the non-diseased:

      Percentage of - IgA AGA Percentage of - IgG AGA Percentage of - IgA EMA
    Average 92% 84% 98.5%
    Range 84-100% 52-98% 97-100%



    POSITIVE PREDICTIVE VALUE- the probability that a person with positive results actually has the disease:

      Percentage of - IgA AGA Percentage of - IgG AGA Percentage of - IgA EMA
    Average 72% 57% 92%
    Range 45-100% 42-76% 91-94%



    NEGATIVE PREDICTIVE VALUE- the probability that a person with negative results does not have the disease:

      Percentage of - IgA AGA Percentage of - IgG AGA Percentage of - IgA EMA
    Average 94% 94% 100%
    Range 89-100% 83-99% 100%



    References:
    McMillan SA, Haughton DJ, Biggart JD, Edgar JD, Porter KG, McNeill TA. Predictive value for coeliac disease of antibodies to gliadin, endomysium, and jejunum in patients attending for jejunal biopsy. Brit Med J 1991;303:1163-1165
    Ferreira M, Lloyd Davies S, Butler M, Scott D, Clark M, Kumar P. Endomysial antibody: is it the best screening test for coeliac disease? Gut 1992;33:1633-1637.
    Khoshoo V, Bhan MK, Puri S, Jain R, Jayashree S, Bhatnagar S, Kumar R, Stintzing G. Serum antigliadin antibody profile in childhood protracted diarrhea due to coeliac disease and other causes in a developing country. Scand J Gastroenterol 1989;24:1212-1216.
    Chan KN, Phillips AD, Mirakian R, Walker-Smith JA. Endomysial antibody screening in children. J Pediatr Gastroenterol Nutr 1994;18:316-320.
    Bode S, Weile B, Krasilnikoff PA, Gdmand-Hyer E. The diagnostic value of the gliadin antibody testing celiac disease in children: a prospective study. J Pediatr Gastroenterol Nutr 1993;17:260-264.
    Calabuig M, Torregosa R, Polo P, Tom s C, Alvarez V, Garcia-Vila A, Brines J, Vilar P, Farr C, Varea V. Serological markers and celiac disease: a new diagnostic approach ? J Pediatr Gastroenterol Nutr 1990;10:435-442.

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    Guest sandra despain

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    Not a bad article but missing one important bit of information. Patient can be iga deficient and that would result in possible false negative results on IGA EGA, IGA ARA and IGA EME. Reflecting that a small intestinal biopsy would be the best approach.

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    admin
    The common list of forbidden grains is: wheat, rye, barley and oats.
    Unfortunately, there are variants out there that go by other names. Durum and semolina are names for certain kinds of wheat that have been bred for specific uses. Both spelt and kamut are versions of wheat. (Other names for these: spelt, Polish wheat, einkorn and small spelt). Bulgur is wheat thats been specially processed. Triticale, a grain crossbred from wheat and rye, is definitely on the toxic list.
    Though corn (maize) is one of those grains that many people -- not just celiacs -- may be allergic to, it is not a grain that is thought to cause damage to the villi in celiacs. It is tolerated by most celiacs.
    Of the common grains, rice is the favorite as it rarely troubles anyone.
    Aside from corn and rice, there is a wide variety of other grains that are used in gluten-free cooking. We even use beans and peas (legumes, pulses).
    The following can be milled into flour: amaranth*, buckwheat* (or kasha), chickpeas (garbanzos), Jobs tears (Hato Mugi, Junos Tears, River Grain), lentils, millet*, peas, quinoa*, ragi, sorghum, soy, tapioca, teff*, and wild rice. Many of these flours are available in health food stores. Some (like rice flour) may be available in grocery stores. (The products marked with an "*" are listed as grains to avoid by some physicians and celiac societies. See the discussion below about anecdotal evidence and possible contamination of flours for more information.)
    To improve the texture of gluten-free baked goods, most cooks use one or more of the following: xanthan gum, guar gum (though this sometimes has a laxative effect), methylcellulose, or a new product called Clear Gel. These can be obtained either through health food stores, specialty cooks stores, or some of the mail order sources listed below.
    Oils popular in cooking include: corn, peanut, olive, rapeseed (canola), safflower, soy, and sunflower.

    admin
    Vijay Kumar, M.D., Research Associate Professor at the University of Buffalo and President and Director of IMMCO Diagnostics: If the test is negative and there is a strong suspicion of celiac disease, it must be repeated after several weeks (3-4 weeks), especially after a high gluten intake. We did a study of two cases with DH who were serologically negative. However, a gluten challenge 1g/Kg body wt/day resulted in positive serology; the results became normal on a gluten free diet.
    If you are a relative of a celiac disease patient and are on a regular diet and the serology performed by an experienced laboratory is negative then there may not be any need for retesting until and unless clinically justified.
    Karoly Horvath, M.D., Ph.D., Associate Professor of Pediatrics; Director, Peds GI & Nutrition Laboratory; University of Maryland at Baltimore: There is no rule for it. If a family member with previous negative tests experiences any gastrointestinal symptoms associated with celiac disease, he/she should undergo serological testing as soon as possible. It is well known that up to 15% of the family members of a patient with celiac disease may have the asymptomatic (latent or silent) form of celiac disease, although they have positive serological tests and have the pathological changes in the upper part of the small intestine. It is also evident that there are at least three developmental stages of mucosal lesions (Marsh MN. Gastroenterology 1992;102:330-354) and celiac disease may manifest at each period of life. That is why we recommend a repeat test every 2-3 years in first degree relatives of celiac patients.

    admin

    Most of the wheat grain and of white flour is made up of starch granules. Starch granules make up about 75% of grain or of white flour. In the processes used to make wheat starch, a small amount of the gluten protein (actually mostly the gliadin fraction, but not entirely), sticks to the surface of the starch granules. The amount depends on the washing method, how many times the granules are washed, and factors like that. Wheat starch can be made very low in surface protein and it is only the surface protein that is of concern (there are some internal granule proteins, but we are pretty sure that they are not gluten proteins).
    For more information on Codex wheat starch visit the Codex Wheat Starch page.

    admin

    Tropical sprue is a disease which causes a food absorption problem, especially with fat. The high risk places for catching tropical sprue are Southeast Asia and South America, and it is not normally found in Africa. The cause is not fully understood, but may be due to a viral infection, and/or from dietary factors. The symptoms are diarrhea (pale large stools), a sore tongue, loss of appetite, and weight loss. In the latter stages of the disease, a patient may develop ostemalacia (softening of the bones), peripheral neutitis, edematous swelling of the extremities, and megaloblasitic anemia. The standard treatment for tropical sprue is folic acid and cyanocobalamin. If diarrhea continues a cycle of tetracycline can be given. Anemia can be corrected by intracenous transfusions if necessary, and iron can be administered if there are any signs of iron-deficiency anemia in addition to megaloblastic anemia. Tropical sprue must be distinguished from gluten sensitivity. It is said that the damage form tropical sprue does not get as severe as that of celiac disease, but it may be very hard to distinguish the two. Arasitic infestations also need to be considered in people who have problems upon returning from underdeveloped areas.

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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