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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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    A FEW THINGS CHEFS GET WRONG ABOUT GLUTEN-FREE FOOD AND CELIAC DISEASE


    Jefferson Adams

    Celiac.com 06/25/2014 - Chefs can be instrumental in guaranteeing a gluten-free dining experience for people with celiac disease. However, otherwise competent and well-meaning chefs can get some basic things wrong about gluten-free food for people with celiac disease, including:


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    Photo: CC--Quadell1) The Culprits are Wheat, Rye and Barley
    Did you know that, in addition to avoiding anything made with wheat, or wheat flour, people with celiac disease can’t eat anything made with rye or barley?

    In a 2012 quiz, fewer than half of the chefs at a major culinary event could name a grain, other than wheat, that was harmful to people with celiac disease. So, it’s rye and barley, in addition to wheat. Got it?

    2) Cross-contamination is a Real Problem
    The tiniest amounts of gluten, anything over 20 parts per million, can cause real and serious problems for people with celiac disease.

    Eating gluten causes things like stomach cramps, nausea, dizziness, diarrhea and vomiting, and other unpleasantness for people with celiac disease. No chef wants a patron to leave feeling like that. That’s why it’s so important for any chef or cook offering gluten-free food owes it to it’s patrons with celiac disease to get gluten-free right.

    3) Gluten-free Ingredients Don’t Guarantee Gluten-free Food
    Once chefs master the basics about what is or is not gluten-free, the next step is to avoid cross-contamination when preparing, cooking and serving gluten-free food.

    Do you cook gluten-free pasta in the same pot of water as regular pasta? Do you make gluten-free pizza in the same prep area or oven as regular pizza? Do you thicken soup, or sauce, or gravy with flour? Do you put croutons on salads? Do you cook regular and gluten-free foods in the same oven or grill? Do you use the same water to boil regular and gluten-free pasta?

    If so, you are adding gluten to otherwise gluten-free food. That’s a big no-no!

    4) Best Practices for Guaranteeing Gluten-free Food
    Practices like those listed above are part of the cross-contamination problem faced by so many people with celiac disease. Remember, there’s no such thing as ‘a little gluten’ to people with celiac disease. To make sure you get it right, know the culprits wheat, barley and rye, be vigilant and watch for cross-contamination. Also, be sure to design and adopt a list of best practices for your particular kitchen that will guarantee a gluten-free dining experience for your patrons with celiac disease.

    By all means, please feel free to share your ideas about what chefs get wrong, and/or can do to ensure a safe gluten-free dining experience for people with celiac disease.


    Image Caption: Photo: CC--Quadell
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    Please don't forget that we often have other digestive problems as well so remember putting a lot of pepper, salt, or other extremely spicy flavorings increase the incidence of being sickened. In my case, bland is better, so you should ASK the patron how they need it prepared, and what NOT to put into it, like a lot of pepper, salt, chile pepper, etc. Basically I DON'T go to restaurants anymore because they just cant seem to get it right. I'm tired of getting sick from eating in restaurants or getting prepared food. I'm a career woman who doesn't have much time or temperament to cook, but an forced to out of safety. I would love to be able to patronize restaurants again, without it shortening my life each time! Thank you.

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    Guest Carol

    Posted

    I have a gluten free cookie business . If you are baking at home you have to be so careful to not put a measuring cup or spoon that has been used in a glutinous flour and/or for that matter tree nut product (lots of issues there) in a container of your gluten-free flour mix. When I bake I do not use any glutinous products in my commercial kitchen and also have a 24 hour air exchange in case someone cut bread, etc in the kitchen that I rent. Many bakeries are offering gluten-free products and putting them in the same cases as glutinous products (illegal) and are not having a designated space or 24 hour air exchange for the gluten-free products. Also, the law is that your products are supposed to be LAB Tested to show your product is under the legal limit of 20 ppm. Many people are not aware of this. Thanks for posting the article - good insight for many.

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    Guest sc'Que?

    Posted

    And by the same token well-meaning writers can perpetuate the drama by not being specific enough.

     

    The article doesn't really clarify the whole baking in a "dedicated" oven thing, which is not exactly a responsible move. You can bake gluten-free items in an oven that previously baked something with mere breadcrumbs... provided the container containing gluten-free items was not compromised. Baking directly on a contaminated surface, however, is another matter... as is baking in an oven where non-gluten-free flour (which hangs in the air) is frequently involved in the final, baked product.

     

    Failure to mention common oversights such as un-disclosed binders such as modified food starch can also be problematic. (Sure, in the U.S. we have certain standards, but what about when using ingredients from Asian countries, whose labeling and testing standards are not as rigorous as ours?)

     

    Vagueness such as these are what cause business owners to either freak out about gluten-free diners or to want to fib about their procedures. When writing about serious issues, please do not over-generalize for the sake of brevity.

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    I have a gluten free cookie business . If you are baking at home you have to be so careful to not put a measuring cup or spoon that has been used in a glutinous flour and/or for that matter tree nut product (lots of issues there) in a container of your gluten-free flour mix. When I bake I do not use any glutinous products in my commercial kitchen and also have a 24 hour air exchange in case someone cut bread, etc in the kitchen that I rent. Many bakeries are offering gluten-free products and putting them in the same cases as glutinous products (illegal) and are not having a designated space or 24 hour air exchange for the gluten-free products. Also, the law is that your products are supposed to be LAB Tested to show your product is under the legal limit of 20 ppm. Many people are not aware of this. Thanks for posting the article - good insight for many.

    Curious what laws are you referring to, can you tell me where I can see these for myself? Are they enforceable? I have never heard of any laws saying you can't put items in the same display case.

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    Guest Esther

    Posted

    The level of confusion amongst well-meaning professionals is amazing. School kitchens are some of the worst offenders with little understanding of cross-contamination issues. Also spelt (einkorn) and oats can be a problem for some coeliacs, as a rule I would avoid using any of these grains in gluten-free diets. Thanks for an informative article.

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    Guest Gillian

    Posted

    Apart from all this there are also problems with commercial sauces etc such as ketchup, balsamic vinegar, mustard and others which may contain gluten and the other additives such as MSG, aspartame and others which many celiacs (and gluten sensitive people) also react to.

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    Guest Jane

    Posted

    Something I have seen a lot, especially in Italian restaurants, is they will advertise the dish as gluten free but only the base (the pasta, the bread, the pizza crust) will be gluten free. When you ask them to check to make sure the pasta sauce is gluten free or the pizza toppings are gluten free, they come back and find out that none of the toppings are gluten free or the pasta sauce has bread crumbs in it. I have been to so many restaurants like this where they advertize a gluten free menu because they went out and bought gluten free pasta or bread but nothing that goes with it is actually safe. I wind up talking to the chef and get this attitude of "well its a fake disease anyway". We always leave, but its never a good thing. Wish these places would close. Be careful out there.

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    Guest Chris

    Posted

    After reading your article the first thing that came to my mind was what about Oats. So thank you Esther for adding spelt and oats to your response.

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    Guest john j acres

    Posted

    Here is a couple more , flour from Afghanistan , spelt, kumnat, atta...

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    Guest Jefferson

    Posted

    And by the same token well-meaning writers can perpetuate the drama by not being specific enough.

     

    The article doesn't really clarify the whole baking in a "dedicated" oven thing, which is not exactly a responsible move. You can bake gluten-free items in an oven that previously baked something with mere breadcrumbs... provided the container containing gluten-free items was not compromised. Baking directly on a contaminated surface, however, is another matter... as is baking in an oven where non-gluten-free flour (which hangs in the air) is frequently involved in the final, baked product.

     

    Failure to mention common oversights such as un-disclosed binders such as modified food starch can also be problematic. (Sure, in the U.S. we have certain standards, but what about when using ingredients from Asian countries, whose labeling and testing standards are not as rigorous as ours?)

     

    Vagueness such as these are what cause business owners to either freak out about gluten-free diners or to want to fib about their procedures. When writing about serious issues, please do not over-generalize for the sake of brevity.

    Your concern is addressed numerous times. To wit: "...the next step is to avoid cross-contamination when preparing, cooking and serving gluten-free food."

     

    "Do you cook gluten-free pasta in the same pot of water as regular pasta? Do you make gluten-free pizza in the same prep area or oven as regular pizza? Do you thicken soup, or sauce, or gravy with flour? Do you put croutons on salads? Do you cook regular and gluten-free foods in the same oven or grill? Do you use the same water to boil regular and gluten-free pasta?...If so, you are adding gluten to otherwise gluten-free food. That's a big no-no!"

     

    And again: "To make sure you get it right, know the culprits wheat, barley and rye, be vigilant and watch for cross-contamination. Also, be sure to design and adopt a list of best practices for your particular kitchen that will guarantee a gluten-free dining experience for your patrons with celiac disease."

     

    I'm sorry if you fee that these points were not specific enough for you. Because every kitchen is different, I'm offering important points for consideration by chefs, not a step-by-step how-to guide.

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    Guest Jefferson

    Posted

    After reading your article the first thing that came to my mind was what about Oats. So thank you Esther for adding spelt and oats to your response.

    Spelt is a kind of wheat and contains gluten. Gluten-free oats are currently regarded as safe for most people with celiac disease.

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    Jefferson Adams
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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
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    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