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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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    NEW GUIDELINES URGED FOR DIAGNOSIS OF NON-CELIAC GLUTEN SENSITIVITY


    Jefferson Adams

    Celiac.com 11/25/2015 - People with Non-Celiac Gluten Sensitivity (NCGS) suffer intestinal and non-intestinal symptoms when they consume gluten-containing food, but they do not have either celiac disease or wheat allergy.


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    Photo: CC--decar66Because there is currently no known NCGS biomarker, it is important to develop reliable standard procedures to confirm NCGS diagnosis. A recent scientific paper examines expert recommendations on how the diagnostic protocol should be performed for the confirmation of NCGS.

    The researchers contributing to the paper include Carlo Catassi, Luca Elli, Bruno Bonaz, Gerd Bouma, Antonio Carroccio, Gemma Castillejo, Christophe Cellier, Fernanda Cristofori, Laura de Magistris, Jernej Dolinsek, Walburga Dieterich, Ruggiero Francavilla, Marios Hadjivassiliou, Wolfgang Holtmeier, Ute Körner, Dan A. Leffler, Knut E. A. Lundin, Giuseppe Mazzarella, Chris J. Mulder, Nicoletta Pellegrini, Kamran Rostami, David Sanders, Gry Irene Skodje, Detlef Schuppan, Reiner Ullrich, Umberto Volta, Marianne Williams, Victor F. Zevallos, Yurdagül Zopf, and Alessio Fasano. They are variously affiliated with 26 research institutions worldwide.

    They have come up with a series of recommendations known as the Salerno Experts' Criteria.

    Under that criteria, a comprehensive diagnosis should measure the patient's clinical response to the gluten-free diet (GFD) and assess the effect of a gluten challenge after a period of treatment with the GFD. Such an evaluation uses a self-administered instrument that relies on a modified version of the Gastrointestinal Symptom Rating Scale.

    In this way, the patient identifies one to three main symptoms that are quantified on a rating scale ranging from 1 to 10.

    Patients then follow a double-blind placebo-controlled gluten challenge by ingesting 8 grams of gluten per day for a one-week challenge followed by a one-week washout of strict GFD, and then moving to the second one-week challenge.

    The gluten-challenge should contain cooked, homogeneously distributed gluten. A variation of at least 30% of one to three main symptoms between the gluten and the placebo challenge should be seen to differentiate between a positive and a negative result.

    These guidelines are designed to help the clinician to reach a firm and positive diagnosis of NCGS and facilitate the comparisons of different studies.

    Source:


    Image Caption: Photo: CC--decar66
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    Guest Gene Ann

    Posted

    When the nutritionist put me on an elimination diet to test for allergies, I had to go without questionable items for three weeks to ensure that my system had cleared out potential allergens. I have read that reactions to gluten can be delayed for up to three days, so one-week challenges seem to be a poorly-designed test that are destined to muddy the water.

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    I had a DNA test done after searching for answers for 37 years. It came back that I have 2 genes which predispose to gluten sensitivity. (Subsequently both my mother & sister came back with celiac genes....) I cut ALL gluten out of my diet, cosmetics, etc. and shortly thereafter I quit throwing up after eating. When I am cross contaminated during eating out I turn into The Exorcist and it's not pretty among other things. The THOUGHT of having to do a 'gluten challenge' completely turns me off and repulses me. I avoid gluten every chance I get - and these JOKERS want me to ingest it just to prove to them that I react to it??? I DON'T THINK SO! The DNA test gave me ALL THE INFORMATION I need! It's either in the genes or not... I get so ill from gluten exposure the thought of what they are suggesting is CRAZY!

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    I agree with the other comment. While this may work for fast respondents to a gluten free diet (who get sick immediately upon eating gluten), some people are not going to see a significant resolution in their symptoms for weeks or months. This seems to be true of some celiacs too so why hold NCGS suffers to such a high standard?

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    Guest Christy

    Posted

    I agree with Gene Ann. A one week wash out is a critical flaw in this protocol. I know I still have symptoms for more than a week from being accidentally cross contaminated once. Eating gluten every day for a week? It would take closer to a month for my body to recover. How do they expect accurate results? Humans are not test tubes. You can't just wash them out and reuse them.

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    I wonder about the the testing method as well. I am allergic to wheat, and sensitive to gluten. I did a gene test that did not prove with the current gene defining of celiac, however if I told you everything that I have- symptom wise it would be celiac. I think we are a long way from learning the truth. Testing is often funded in one direction to what the outcome is expected. I think that celiac should be one illness that should be based on symptom and outcome on a GFD.

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  • Related Articles

    Jefferson Adams
    Celiac.com 08/11/2014 - A study establishing the existence of non-celiac gluten sensitivity has been turned on its head; by the very scientist who conducted it. In 2011, a small but scientifically rigorous study found that dietary gluten can trigger gastrointestinal distress in people without celiac disease. That study was conducted by Peter Gibson at Monash University in Australia.
    Last year, Gibson published a follow-up study, which indicated that the real culprit might not be gluten, but fermentable, poorly absorbed short-chain carbohydrates known as FODMAPs. Specifically, Gibson’s second study found no effects of gluten in patients with self-reported non-celiac gluten sensitivity after dietary reduction of fermentable, poorly absorbed, short-chain carbohydrates. That is, once these alleged gluten-sensitive patients reduced their FODMAP intake, their symptoms disappeared, Whether or not they were consuming gluten.
    That study looked at 37 self-identified gluten-sensitive patients. Gibson’s team provided all meals for each subject for the duration of the trial. For each meal, the study team eliminated all potential dietary triggers for gastrointestinal symptoms, including lactose (from milk products), preservatives like benzoates, propionate, sulfites, and nitrites, and those fermentable, poorly absorbed short-chain carbohydrates called FODMAPs. They also collected urine and fecal samples from all subjects for the full study period. The team then randomly and secretly cycled test subjects through various high-gluten, low-gluten, and no-gluten (placebo) diets. No test subject had any idea which diet plan they were on at any given time.
    In the end, the results showed that test subjects self-identifying as ‘gluten-sensitive’ complained about every single diet — even the non-gluten placebo diet. They complained about pain, bloating, nausea, and gas to a similar degree, whether or not the food contained gluten. Gibson’s latest findings offer the more evidence against non-celiac gluten sensitivity as an actual medical condition. Among them, a full 65% of those who actually met criteria for NCGS showed intolerances to other foods, while 75% of those folks show poor symptoms control despite gluten avoidance.
    So, for now at least, attention remains on FODMAPs as a potential cause for the complaints previously associated with adverse gluten reactions in non-celiac individuals.
    So, to sum it up. The latest science argues against the existence of gluten sensitivity in non-celiac individuals, and indicates that the actual culprit behind gastric complaints in these cases might be fermentable, poorly absorbed short-chain carbohydrates called FODMAPs.
    Moreover, these results also stress the importance screening for celiac, and testing for other food sensitivities for those people claiming non-celiac gluten-sensitivity.
    Source:
    Gastroenterology. 2013 Aug;145(2):320-8.e1-3.

    Jefferson Adams
    Celiac.com 12/26/2014 - Celiac disease can have such a wide-ranging number of symptoms, ranging over so many parts of the body, that it can be hard for doctors seeking to make a diagnosis to even suspect celiac disease as an underlying cause in the first place.
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    Positivity for IgA tissue transglutaminase antibodies was detected in 97%. Th steam found villous atrophy in 87%, while 13% had minor lesions consistent with potential celiac disease.
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    Source:
    BMC Gastroenterology 2014, 14:194. doi:10.1186/s12876-014-0194-x

    Jefferson Adams
    Celiac.com 03/23/2015 - There's been a bit of ping-ponging going on about the status of non-celiac gluten sensitivity as a valid medical condition. Studies have yielded conflicting results, with some supporting, and others negating, the existence of non-celiac gluten-sensitivity. 
    So what's the deal? Does non-celiac gluten sensitivity exist, or not? Researchers and clinicians continue to debate whether people without celiac disease or wheat allergy who consume gluten can experience intestinal and extra-intestinal symptoms attributable to non-celiac gluten sensitivity (NCGS).
    Taking the latest stab at the problem, a team of researchers recently conducted a randomized, double-blind, placebo-controlled, cross-over trial to determine the effects of administration of low doses of gluten to subjects with suspected NCGS. The research team included A. Di Sabatino, U. Volta, C. Salvatore, P. Biancheri, G. Caio, R. De Giorgio, M. Di Stefano, and G. R. Corazza. They are variously affiliated with the First Department of Internal Medicine at St Matteo Hospital Foundation at the University of Pavia in Pavia, Italy, and with the Department of Medical and Surgical Sciences at St Orsola-Malpighi Hospital at the University of Bologna in Bologna, Italy.
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    Clin Gastroenterol Hepatol. 2015 Feb 19. pii: S1542-3565(15)00153-6. doi: 10.1016/j.cgh.2015.01.029. Clinical trial no: ISRCTN72857280.

    Jefferson Adams
    Celiac.com 06/11/2015 - Non-celiac gluten sensitivity (NCGS) is a somewhat controversial emerging disorder. There is no current medical consensus regarding its criteria, and study data have been inconclusive.
    Many alternative health practitioners recommend gluten-free diets for people who claim to be sensitive to gluten, but do not have celiac disease. Despite numerous reports of people without celiac disease experiencing celiac-like symptoms when eating gluten, there are currently no clear diagnostic guidelines for NCGS. NCGS is still diagnosed by excluding celiac disease, and finding no reliable celiac biomarkers.
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    Clearly more studies are needed to determine if NCGS is a bona fide medical condition, as many suspect. Until then, there is very little treatment available from medical practitioners, and many people with self-diagnosed NCGS will doubtless be left to self-treatment. For many, this will include avoiding gluten.
    Do you, a loved one, or someone you know have gluten-sensitivity without celiac disease? Share your thoughts and comments below.
    Source:
     Aliment Pharmacol Ther. 2015;41(9):807-820.

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    Connie Sarros
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    Source:
    PLoS One. 2018; 13(3): e0193764. doi: & 10.1371/journal.pone.0193764

    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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    Source:
    cnbc.com

    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