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      Frequently Asked Questions About Celiac Disease   09/30/2015

      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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Cd And Irritable Bowel Syndrome

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i am surprised that researchers at the mayo clinic seem not to be taking into consideration the fact that ibs is many times too easily attributed to people with symptoms that are not specific enough. we have heard about too many peple who were labeled as ibs's rather than being checked first for other diseases including ours. what is your experience?

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I read a recent study on ibs and celiac disease as well. Not sure if it's the same one you read. I'm in the process of being checked for celiac disease. Not sure I have it. Blood tests negative and a 14 month wait to see gastro. May do the enterolab test. Diagnosed with ibs at age 3 (I'm 42 now). I baffled the doctors apparently. I'd be in agony and fall to the floor - terrifying my family of course. After 1 week in hospital my parents were given the Nervous Stomach label. Years after, it of course became known as Spastic Colon and then IBS. Of course, I may still have IBS. I may not even have celiac disease. But I've taken it upon myself to find out more since my doctor doesn't think there is anything wrong with me (!!). I do think that those people diagnosed with IBS, especially for as many years as so many of us, should take it upon themselves to delve further and look at what else there might be. There isn't much one can do with ibs. Cut out coffee, chocolate, etc. Never worked for me.

Chantalle

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I wanted to add my experience with the 'IBS' diagnoses. Over 7 years ago I finally found a primary care doc thru my HMO whom I considered caring and sensitive. So I told her about my chronic symptoms of bloating, cramping, excessive gas, occasional diarrhea and occasional constipation, but mostly just feeling like I 'had to go' whether I did or not (probably from the bloating). Previously, I had blamed my own poor eating habits (chronic dieting interrupted by occasional binge eating) for my symptoms. However, my doctor immediately diagnosed my symptoms as 'Irritable Bowel Syndrome' which I later realized is not a disease at all, but a descriptive term for symptoms which doctors really don't understand, but for which they need a diagnostic label for billing purposes. <_<

My doctor's suggestion was to follow the IBS diet which recommended for 'diarrhea as main symptom': "avoding alcohol, caffeine and nictotine (I already avoided those after a previous acid reflux diagnosis recommended avoidance); avoiding beans and brocolli (I already took 'beano' for indigestion from those); avoiding spicy foods (I avoided those because they paralyzed my taste buds to any other foods); avoiding foods high in acid (already avoiding for acid reflux); avoiding fatty foods (never could digest those anyway, so I didn't eat); avoiding dairy (I already took 'lactaid' because I KNEW I couldn't digest dairy); avoiding sorbitol (Again I already avoiding sugar free gum which gave me gas and bloating from sorbitol); use an over the counter 'liquid cement' product to stop diarrhea (obviously I only tried that once before I decided never again) and FINALLY what to eat (rather than avoid) was "add more starchy foods to your diet, especially bread and pasta"!!!!!!!!!" :angry: I'm now amazed that the IBS diet recommended for chronic diarrhea the exact foods which CAUSE chronic diarrhea for celiacs. :o

WAIT--there's more to that IBS diet. For 'constipation as the main symptom': "Use over the counter bulking agents (I'm not sure what's in those, but tried one once and became more bloated and constipated than ever before); use laxatives (DUUHHH!!! I didn't need to pay a doctor to hear that); and ADD FIBER-RICH FOODS to your diet slowly (that sounded good until I checked the recommended foods)." They recommended "Insoluable fiber in whole-grain products" which included "whole grain breads, pasta, tortillas and cereals. The first ingredient listed shoud be whole-wheat flour." <_< AMAZINGLY I later realized that the 'whole grained breads from whole-wheat flour' and shredded wheat and bran cereal which I ate to cope with progressively more chronic constipation contained the very ingredient that exacerbated those symtoms--GLUTEN!!! :( The IBS diet also recommended adding more fruits, vegies and legumes for fiber, but it stated that those foods gave mostly soluable fiber which regulated blood glucose and cholesterol as opposed to insoluable fiber in "whole grain products" which 'stimulates the colon to keep waste moving out of the bowels' (UNLESS YOU JUST HAPPEN TO BE ONE OF THOSE RARE INDIVIDUALS WHOSE IBS SYMPTOMS ARE REALLY INDICATIVE OF CELIAC DISEASE FOR WHICH WHOLE-WHEAT CAN PRODUCE SYMPTOMS OF CONSTIPATION, BLOATING, CRAMPING AND GAS!!!!). :blink:

I only realized my 'IBS' symptoms were really gluten intolerance symptoms about 6 weeks ago after reading a newspaper article which described MY symptoms as being more common to celiac than the 'classic' diarrhea, fatigue and weight loss symptoms'. So I have redefined 'IBS' to mean "I'm Being Squeezed", because that's what my intestines feel like after ingesting gluten. :o Not only is the IBS diagnosis misleading and distracting, but recommending that celiacs follow the standard IBS treatment diet is encouraging them to continue damaging their already very damaged small intestinal villi and produce even more excruciating pain and mysterious symptoms. I KNOW after stupidly following those "IBS" recommendations for 7 years too long. Now I tell anyone who gets the "IBS" copout from their doctor to insist on a celiac blood test or just ignore the doctor's IBS diet and start avoiding gluten as if it were poison, because it IS!! :angry:

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Good discussion. I gave up coffee for two months twice. Didn't do a thing for me. When my IBS started I would spend weeks doubled over in tears. Bloating, cramping, very ichy feeling, belching and bowel movements of all sorts. I can't control it when it gets that bad and took to wearing depends to save my poor clothes and underwear. I was never able to relate it to what I had eaten. Now with all my other symptoms I realize it was a combinattion affect. I've been sick for so long it's all just a part of my life regardless of what I do or don't eat. One exception is nuts and whole corn. They cramp me up bad and go right through me. There is a way to do nuts but soaking them in water and sea salt and maybe a little whey (made from draining yogurt or kefir). After a day or so many hours you can drain them, season them and bake in a 150 degree over (I forget how long but can look it up if anyone is interested). These are called crispy nuts and are easier to digest. Well, I sent my stool sample off today to enterolabs. Can't wait for the results. Hugs, Carol B

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I am waiting on blood work results after years of being told that either I had Crohns like my mother (but no test showed the appropriate ulcerations) or I had IBS.. they took me off all fats, and I was already off meats and dairy- I eat fish and poultry but other meats and dairy cause unbelievable amounts of cramping, bloating and other issues.... and added fiber in large quantities- particularly whole wheat... it didn't help.. I've dealt with this for years and gotten so frustrated. Finally gave in and went back tot he only GI practice in town that my insurance covers.. but took an appt with a PA instead fo the doc I saw the last 3 times.. she promptly said I was displaying ISB like symptoms, but.. didn't explain the but and tried me on some anti-spasmodics which seems ot help the diahrea and cramping a TON.. and sent me for bloodwork to check various levels....

I am actually hoping for a positive diagnosis- gluten free wouldn't be THAT hard, and it would explain a lot of my other health issues. Thanks for the information guys...

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I have been to Mayos 3-4 times, the first time being in the 70's. Each time I have come home with an iba diagnosis. I found out about celiac on th ivillage message boards and promptly asked my local doctor to recomment testing for me. He was convinced I should have this testing done at Mayos. I resisted at first. I said, "They just look at me and start thinking ibs". However another person had recently gone to Mayos and been tested for celiac. So I have decided to go there. Actually I have had the blood work done at my local clinic am waiting for the results to come back and a n appointment to have the biopsy done at Mayos. Hopefully they will come through for me this time, but I hate staying on the gluten foods while waiting for the biopsy and the appointment. Meanwhilel, I have run into a site: http://www.breakingthroughthevicious cycle.info/ which recommends a very strict ibs and celiac diet. This approach sounds good to me. I am rather tempted to try it if I don't get an appointment soon.

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Well bearing in mind how many people are thought to have IBS it is also likely that many people actually have Celiac and IBS at the same time! Whether the IBS is caused by Celiac or whether some people would still have IBS symptoms even if they never had Celiac, so in any given case the fact that a gluten-free diet may not show improvement does not rule out Celiac as a contributing factor. At first I refused to believe that I maight have Celiac since I knew what all my food triggers were, and gluten was not one of them! But now I am fairly certain that the other foods only triggered symptoms caused by the chronic damage being done to me by the Celiac. I talked to my Gastro yesterday and we have agreed that the best course for me right now is to continue trying the gluten-free diet for a few more months and see how I respond. I've already lost 3 pounds in 3 weeks on the gluten-free diet (and I was nowhere near overweight to begin with- if anything I'm as bit too scrawny) but I still see this as a good thing because it is an indication of the fact that I've had so much more energy and been much more active as a result. That said, I still have some IBS-like symptoms but I think as my gut continues to heal those will continue to subside as well. After so many years of damage to my entrails I may never be "normal" but at least I'm not getting worse anymore!

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From what I have read about IBS (and I've read a LOT since I was misdiagnosed with 'IBS' 10 years ago), irritable bowel syndrome is not a DISEASE with a known etiology or treatment. Doctors use that term to describe SYMPTOMS of pain, bloating, gas, constipation, diarrhea, etc. They refer to IBS as a 'functional bowel disorder' meaning that the bowel is still working, but giving the patient lots of distress. Since doctors only look for really obvious stuff with colonoscopies and other tests, they don't see damaged microscopic villi which indicate celiac. The naturopath referred by my HMO told me 'irritable bowel syndrome is ONLY a diagnostic label for billing purposes, not a true disease. Since there's no effective treatment, drug companies are free to throw lots of drugs at 'IBS' symptoms. If one of their drugs reduces any symptoms, so much the better for drug company profits. So I guess you can have 'IBS' symptoms and celiac, because IBS is just a list of symptoms which may indicate celiac, Crohn's, ulcerative colitis, and a few other things. It's unfortunate that doctors give up after labeling symptoms IBS. That's just a beginning. Too many celiac diagnoses are delayed with the IBS label and the patients don't insist on MORE tests for something more definitive. Of course, doctors lack of knowledge about celiac disease limits their ability to even consider celiac from IBS symptoms, so we have to push for more tests. <_<

BURDEE

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Yeap, that's where I am... I gave up (for a year) after the IBS diagnosis and recently found a new GI practice. What's amazing to me is how eager doctors are to give up testing further and that's why I think we owe it to ourselves to keep searching out the root of our symptoms. This time I saw a PA and I really like her since she's eager to get the root cause of the symptoms. She's currently testing a boat-load of things. :D When you've had GI issues for so long, you begin to think it's normal and harmless and that's what they tell you about IBS... well, other than the fact that it's painful and inconvenient. I think that's what bothers me so much about IBS... you treat the symptoms because they tell you it's harmless and you drown out the possiblility that your body was just trying to tell you something is wrong. We know our bodies best, even if we don't know how to speak it's medical language.

Gretchen

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