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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 ABOUT JUST A LITTLE GLUTEN?


    Tina Turbin

    Celiac.com 08/25/2016 - You just got diagnosed Celiac and are wondering how serious this really is. What if there is just a little gluten in your food? What if you use the same toaster for your gluten-free bread as your wife's/husband's regular bread? What if those french fries are gluten-free but they fry them in the same fryer as those nice gluten coated onion rings?


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    Well, my answer is always that no amount of gluten is "safe". Items that are certified gluten-free must be tested and must pass, having less than 20 parts per million (ppm) of gluten. That means that less than .002% parts of that item contain gluten. That is quite a small amount but not necessarily small enough to not have a reaction to it. Some products even test as low as 10 ppm or 5ppm.  Anything lower than 3ppm is undetectable by any test out there right now. Some products state they are less than 20ppm but you really don't know if that is 19ppm or 5ppm so I always assume the worst just in case.

    So let's assume these french fries are nice and crispy and they share that fryer with those delicious onion rings. The answer is, stay away. You most definitely will end up consuming gluten. You may not have a reaction that you notice from these french fries, as some people are more sensitive or less sensitive, but that does not mean they are not causing an autoimmune reaction and causing damage internally.

    My advice: get your own dedicated gluten-free toaster; ask and ask again if sauces contain gluten; ask if the fryer shares space with gluten containing items and even let your server know you have celiac disease and to let the chef know. Your server may not know enough about gluten and celiac disease, but chefs almost always do and will understand the severity of it. I have had much better luck eating out when I have my server actually let the chef know I am celiac. There have been many occasions where my server said something was gluten-free without asking the chef and in the end I ended up sick in bed because of it.


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    Guest Phillip M.M.

    Posted

    I guess I am still hurting myself by eating the gluten filled French fries. I live in a part of the country of USA that has no specialist that I can find so far for testing. I've been suffering for years with digestive issues and other health concerns that identify with the other followers of this informative site. Thank you all for sharing, I need to work harder at understanding this!

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    Guest Chris ruh

    Posted

    I guess I am still hurting myself by eating the gluten filled French fries. I live in a part of the country of USA that has no specialist that I can find so far for testing. I've been suffering for years with digestive issues and other health concerns that identify with the other followers of this informative site. Thank you all for sharing, I need to work harder at understanding this!

    You can get tested by a natirepath through muscle reflexology. It´s inexpensive and doesn´t hurt.

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    Guest Heather

    Posted

    Thank you Tina Turbin. For those of us that remember how horribly ill felt, why would we ever want to take chances?

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    Guest Gillian

    Posted

    When I was new to gluten-free I lunched out six days in a row and nearly always had potato chips or something fried without obvious gluten, I ended up with a really severe case of dermatitis herpetiformis which lasted months and so learned my lesson! At home my husband has gluten-free toast made with my bread to make things easier.

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    Recalling the bad brain fog, mental/nerve issues, yeah never eating anything with straight up gluten again. That fear of your own body not doing what you will it, your own mind not being able to think and do things you know it should do is the scariest thing on this earth. Slight contamination will still lead me to loss of feeling in my fingers, extreme gut pains, and slight confusion. Boils down to no a little is not alright, I get really mad at people that say "Oh you can have a little bit". Brain damage is real, nerve damage is real, and dealing that that pain for a few hours on top of it is not worth it.

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    I guess I am still hurting myself by eating the gluten filled French fries. I live in a part of the country of USA that has no specialist that I can find so far for testing. I've been suffering for years with digestive issues and other health concerns that identify with the other followers of this informative site. Thank you all for sharing, I need to work harder at understanding this!

    There are "mailed" testing kits. Get one soon.

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    Wow! I just don't get this. In December 2012, I went in for a normal over 50 test and out of the combination endoscopy/colonoscopy, my doctor said that I have celiac disease. This came as a huge shocker for me as I have never and I mean never ever had any of the stories that people tell about having celiac or any of the noted symptoms. But being a person that believes that he should do right for his body, I went on the gluten free diet. The diet was almost the most incredibly awful thing that I have ever done as I followed the nutritionist that my gastro doctor put me on and after 3 months I had seen a horrible change in my lifestyle as I put on 20 pounds and saw regular bowel movements turn into Playdoh inspired toy bowel movements. I stayed with the diet for 2 years and got a second opinion; the second opinion was one gastro doctor backing up the other gastro doctor, but 2 endoscopies later showed no signs of celiac, but I was now over 60 pounds heavier, lethargic, and looking like I had one foot in the grave as everyone said that my color looked awful. Blood tests showed that I was now anemic and had diabetes as A1C and blood sugars were up. My gastro doctor said that if I was unhappy that I should go off of the diet by eating regular foods every 10 then 5 days as long as I did not feel any of the noted symptoms that people with celiac complain about. Of course, I did not experience any of the symptoms. My A1C started dropping as did my sugars and my family said that my facial colors looked great again. In addition, I lost over 30 pounds and feel great as I am back walking and exercising daily. Of course, this leads my gastro doctor doing another endoscopy and saying that the villi are starting to fold over again. He recommended going back on the gluten free diet, but took notice of my improved health conditions especially the regular and normal bowel movements being off of the diet. He said that it seems that I am more allergic to being on the gluten free diet than having what one would suspect being off of the diet. I got to admit that being on the gluten free diet was the worse as I ate hot dogs on gluten free buns that were like eating hot dogs on drywall. Bagels that were gluten free from Sweet Note Bagels that took a while to find that were delicious that became no longer available to me without some long travel because the bagel shop owner thought that his wife's gluten free bagels that got stuck in your throat were better. And for the Irish-German in me, the gluten free beers were rated a step up from poison (excluding Brunehaut-so delicious but mortgage worthy, Omission which gluten free people complain about the levels, and Daura); but really none compare to a Heinekin, Becks, Coors Light, or Miller. Both Gastro doctors recommended Vodka or Tequila. Really, I want a beer and have to go for Vodka? Tequila is good for Margaritas, but there is the sugars again. And then there is the fight over regular bread in the toaster over buttering bread or using the same mayonnaise as everyone else, And I do the cooking for the family, which means after 10 hour work days cooking two meals because no one in the household can stand to taste gluten free pasta, breads, or other processed items in their meals. It's like marriage or the diet or get out? Well for anyone wondering why anyone would want to eat items with gluten sometimes... I'd rather go and eat them all the time, but my head still tells me to try the diet again. Which option puts me closer to the grave: watching the A1C go up on the diet or feeling great not knowing what the celiac is doing to the insides? All I ever wish is that I didn't listen to the gastro doctor make me get that first endoscopy as I don't have any symptoms and might never had known!

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    Guest Sue Nobles

    Posted

    I have learned that if my food is only contaminated by gluten, I experience a far greater response than if I straight up have that piece of cake! Shortly after being diagnosed, my sister was making pasta salad, and was making me some with gluten-free pasta. She was already boiling her pasta, so she did a separate pot for mine. The problem came from using the same spoon to stir the pastas and then the same drainer. Within 24hrs. I was deep in the throws of GI distress!

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    Guest auldtwa

    Posted

    I apparently have an "anomalous" kind of celiac, manifesting only in failure to absorb. After several years of testing, endoscopies, and taking iron pills, my doctor has told me it is OK to not worry about "trace" gluten like french fries in "glutened" oil. I don't eat fries a lot in any event but it is nice to know I can eat SOMETHING if I go with the kids to McDonald's on the rare occasions we do. But after the same years of actually being gluten free, I do find I get really sick if I eat, say, a muffin. (I didn't get sick before, so I assume my body has adjusted to avoiding main sources of gluten. ) But what I really wish for is a pill, something like Lactaid, that would occasionally let me eat some Dim Sum. That is the thing I miss most.

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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

    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