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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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    THE ZEN OF GOING GLUTEN-FREE


    Yvonne Vissing Ph.D.


    • Journal of Gluten Sensitivity Winter 2016 Issue - Originally published January 5, 2016


    Celiac.com 03/23/2016 - Often when people hear that someone is "going gluten-free," they think that just means people are not eating wheat. This kind of thinking focuses on the obvious—since gluten is in foods it means watching what is eaten. They may associate this change in diet with some biological process or disease issue. In the world of the general public, they're not really sure what "gluten" is and they're not totally convinced that eliminating it will improve health. But for those of us who make a commitment to going gluten-free, it is far more than just eliminating certain food products. It is a personal transformation of self. What people don't often talk about is it being a psychological and social change as well.


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    In many ways, making a commitment to seriously go gluten-free is an act of Zen. The Urban Dictionary defines Zen as "a state of focus that incorporates a total togetherness of body and mind. Zen is a way of being. It also is a state of mind. Zen involves dropping illusion and seeing things without distortion created by your own thoughts." What I've found is that going gluten-free requires thoughtful practice, observing the body, monitoring the mind, and seeking knowledge that one integrates into regular practice. The result is the personal expression of insight into daily life.

    Going gluten-free isn't just about eating. It is also about personal discipline. It has a lot to do about how we think and how we live. When we started going gluten-free we thought it was just going to entail a dietary switch. What we've learned over the last decade is that going gluten-free is an act of Zen. Our journey into becoming gluten-free started because health issues forced us down that path. We didn't willingly choose to go there. We would have been content with gorging on Texas toast, pasta, and Oreos for the rest of our lives. But if we did, we would have been chronically sick. The Universe pushed us onto the gluten-free road. At first, we did not go gracefully. We stumbled and fell and made a mess of going gluten-free. Going gluten-free seemed miserably hard and terribly inconvenient. We couldn't find products that tasted good, and those we found were expensive and weren't necessarily healthy (the amounts of eggs, butter or oil in many of them were mind-boggling). We spent too much money on poor-tasting products that were very difficult to find. We griped and complained. We felt alienated and imprisoned. Going out to eat was life-threatening because most restaurants didn't cook dishes that were safe, or if they did they cooked them in an environment in which they could be cross-contaminated. The idea of having to eat awful-tasting food and not being able to go out to eat for the rest of one's life was dreadful and depressing. Eating is one of the joys of life, and feeling like one was never going to be able to eat delicious food again felt like a fate worse than death. Going gluten-free seemed doomed to be an act of suffering. Sometimes, it is only through making a mess of our lives that we figure out how not to.

    Such is the case with our going gluten-free. What we didn't realize until later was that we had created this negative reality in our minds. You can go gluten-free smoothly, effortlessly, inexpensively, and easily with no disruptions in your daily lives. It need not be a big deal. This process may take a bit of time. The secret in this transformation has little to do with the gluten-free foods available. It has more to do with what is going on in our heads.

    Years of diligent practice, trial-and-error, patience and persistence, and learning have helped us to transform our perception of going gluten-free into an easy, inexpensive, and delicious way of eating. It has also fostered a different relationship with what we eat, why we eat, and how we eat. It has changed our relationship with food itself, how it is prepared, and how it is consumed.

    Thinking you can eat anything you want and not get sick is illusion for people who must go gluten-free. It requires mind-over-matter self-control when we're hungry and desire foods that may not be safe. Giving in to that longing for a certain cookie or a bite of Grandma's homemade lasagna can make a person with celiac very sick. Being mindful of why that food item creates desire in us is a useful mental exercise. Certain foods evoke memories and emotions that are more delicious than the foods themselves. We can still enjoy the memories without eating foods that aren't good for us.

    Food is very social and relational. Eating something served that isn't safe in order to please or not to appear rude, when it has a high likelihood of making us sick, isn't being kind to oneself. There have been times we've gotten annoyed when what-should-be-safe food has been contaminated. On the surface, it shouldn't be a big deal to redo the dish. But the symbolic message conveyed by serving someone with celiac glutened food is more problematic because it reflects that the server didn't really care about our needs. What happens to our relationships with family, friends, or certain establishments who go out of their way to make sure we can eat good foods, safely, in a no-big-deal manner? We care for them all the more. Frankly, we secretly want to see what goes on in the kitchen and read the ingredients on a product and not just take a waiter's declaration that "I'm sure it's gluten-free" to be an accurate reflection of reality until we are sure that what they say accurately reflects how actively sensitive they are to the needs of others who have dietary needs that are different from their own. Issues of trusting others, and trusting ourselves, is part of the gluten-free process. Helping to teach those who didn't understand the importance of being gluten-free in a constructive and thoughtful manner is much better than getting angry at them and refusing to eat with them again.

    Going gluten-free requires mindfulness. It gives us a relationship with our food as well as with others. Eating whole and healthy foods is better for us. Taking time to understand what's in our food really matters. Cooking ingredients in a thoughtful, less-hurried way creates lovelier dishes. Consuming them with gratitude and in communication with others makes them even more delicious. We want to know where the food came from, how it was cooked and what it was cooked with, and details of the dish's preparation. Were those oats grown next to a wheat field? Did these nuts get processed on machines that also processed other items that contained glutens? Were there croutons on the salad that you just picked off? Asking questions in a non-combative way is an art. Learning to read labels and knowing the list of unsafe ingredients must be transformed from being a big deal to it being just another routine step in an ordinary day. Learning how to shop, cook, clean, serve and eat are all actually complicated steps that require attention to detail. It is in the transformation of managing all these details into a smooth, seamless and calm process that going gluten-free becomes Zen.

    It took us a long time to realize that going gluten-free successfully has more to do with what's going on in our heads than what's going on in the kitchen. Look upon going gluten-free as a Zen experience, in which you have to change one pattern of behavior for a new, better one. You, like we, may find you have to change attitudes toward eating in general and eating gluten foods in particular—and you will be all the better for it.

    We'd love to help you to learn more about our approach to going gluten-free. Check out our book, Going Gluten-free, which is available from Amazon and NorLights Press, and let us know how your journey is going!


    Image Caption: Photo: CC--Alejandro Forero Cuervo
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    Guest Lauren Komack

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    Love this article. I write about many of these things for the New England Celiac Organization (formerly the Healthy Villi) and cover the psychological, emotional and pragmatic aspects of living gluten-free, with the focus on celiac disease. The column is called "The Gluten-Free Way". You covered a huge amount of information very well and very clearly. Thank you.

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    Guest Brenda Asbury

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    Very good article. I found myself feeling resentful that I can't eat the Krispy Kreme doughnuts, lasagna, etc, like I used to eat so I treat myself by overeating the gluten free treats full of sugar. I just have to come to terms with the fact that I do have celiac and the correct way to eat and quit feeling like I'm being punished. Like you said, there is a lot that goes on in the head.

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    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

    Jefferson Adams
    Celiac.com 04/17/2018 - Could the holy grail of gluten-free food lie in special strains of wheat that lack “bad glutens” that trigger the celiac disease, but include the “good glutens” that make bread and other products chewy, spongey and delicious? Such products would include all of the good things about wheat, but none of the bad things that might trigger celiac disease.
    A team of researchers in Spain is creating strains of wheat that lack the “bad glutens” that trigger the autoimmune disorder celiac disease. The team, based at the Institute for Sustainable Agriculture in Cordoba, Spain, is making use of the new and highly effective CRISPR gene editing to eliminate the majority of the gliadins in wheat.
    Gliadins are the gluten proteins that trigger the majority of symptoms for people with celiac disease.
    As part of their efforts, the team has conducted a small study on 20 people with “gluten sensitivity.” That study showed that test subjects can tolerate bread made with this special wheat, says team member Francisco Barro. However, the team has yet to publish the results.
    Clearly, more comprehensive testing would be needed to determine if such a product is safely tolerated by people with celiac disease. Still, with these efforts, along with efforts to develop vaccines, enzymes, and other treatments making steady progress, we are living in exciting times for people with celiac disease.
    It is entirely conceivable that in the not-so-distant future we will see safe, viable treatments for celiac disease that do not require a strict gluten-free diet.
    Read more at Digitaltrends.com , and at Newscientist.com