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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 FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) 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 Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Sick To My Stomach
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I have been 100% gluten free for a little over 30 days. I have not eaten anything even slightly questionable. So, my question is, is it "normal" to be sick to your stomach?? I eat something, and then my system "cleans out." I am very swollen & not losing weight... I just can't keep anything in! Will this end after a while? Will my system get cleaned out and stop? Any help would be appreciated ~ I am tired of spending so much time in the bathroom!!! :(

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Completely normal.......you can go months or even a year without getting better and without making any mistakes and even that can be normal. A month surely isn't enough time for your body to heal. My dr. compared it to a train or some moving vehicle. Think of a car or train going at top speed -- that's like the celiac tearing up your body at topspeed. When you start the diet, you slam on the brakes, but it still takes awhile for the train to come to a complete stop. I've been 8 months and I'm not better. Endos have shown that I'm not injesting accidental gluten, no problem with any other organs, no other allergies.....it takes time....and one month, in most people, is not nearly enough.

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Thank you celiac3270... my brain kept telling me that, but I was starting to worry! I have just been SO sick, and was starting to think maybe something else was wrong. I guess I'll just prepare myself for a "season of healing" and try and be patient. :rolleyes: Again.... Thanks!

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Sure :D .......I just went back to read your post again and I realized that I hadn't really noticed the first time what you said about cleaning out the system.....that's the same sort of impression I get about my system 8 1/2 months into the diet. I still get sick and, as a matter of fact, I'm sick right now. I went into school to take a test (I'm out often enough to begin with, so I try to tough it out when I can) and I came home around 1:00. Fortunately, the cramping isn't as debilitating as it used to be, so I can at least lie here with my knees to my chest and type :unsure:

I keep my meals down, but then again, I usually did that in the past. It's just, every few days I'd get severe cramping and vomiting. I had constant bloating and a lot of gas. I was really thin (5' and 70 pounds; when I got sick I would lose 2-5 pounds and then eventually climb back up to seventy and repeat the process) and my mom said she used to cry when she thought about how thin I looked when I came out of the shower or changed my clothes or something. She kept saying that she felt like she was poisoning me or something, which she, essentially and inadvertently was ;) . Anyway, I have had some improvements with the diet -- the bloating comes only when I'm sick, the gas is also when I'm sick but not usually, and I used to get occasional diarrhea which is now completely gone! The cramping isn't quite as bad, but still not something that you can just function normally with, and I don't vomit as much when I get sick. I'm now about 5'2 and 86 pounds, a new record for me :)....2 inches and 16-20 pounds in eight months :D. I feel like I know a lot about celiac and the diet by now, and if I could just shake the still persistent cramping/vomiting, I'd be fine....I still have quite a ways to go, though. What was my point again? Oh, yeah, I kept my meals down always, but I'd just puke every few days....now I puke every 1-3 weeks. Though I don't vomit as much anymore, a lot comes up really forcefully -- it actually hurts in my chest with the force of the vomit and a LOT comes up, but it's not projectile or anything.......sorry to ramble on about my story, I'm just bored and with not much else to do but read and I got off on a bit of a tangent. To simplify the whole thing, I'm still having this "cleaning out" thing with my system, too.....I just hope that you don't need to deal with it for 8+ months. Although I might add, it seems like forever to get better for the first 1-4 months and after that you just sort of accept it, pathetic as it is, and wait it out without counting the # of days gluten-free and asking why you're not better.

I eat something, and then my system "cleans out." I am very swollen & not losing weight... I just can't keep anything in! Will this end after a while? Will my system get cleaned out and stop? Any help would be appreciated ~ I am tired of spending so much time in the bathroom!!!
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    • Yes you are correct. Interestingly my genes in the US are thought to be more associated with RA. Which is something they thought I had prediagnosis. In the Middle and far East they are more likely to be associated with celiac and they are rare genes in Caucasians which I am according to my parents known heritage. I always caution folks not to take the gene tests as absolute proof they can't have celiac because I had one child who had positive blood and biopsy, did well on the diet, then got genes tested in young adulthood and was told they could never be celiac. Of course that resulted in her abandoning the diet. I worry but hope someday doctors will realise we still have a lot to learn about the genetics of this disease. PS While I still have some deformity in my hands my joint pain resolved after a few months on the diet.
    • It seems like you really need a concrete or near concrete answer so I would say maybe you ought to get the gene testing. Then you can decide on the gluten challenge.   Thanks! I am convinced our dogs are there waiting for us. Meanwhile they are playing, running, laughing, barking & chasing. I have another favorite quote dealing with dogs: "If a dog will not come to you after having looked you in the face, you should go home & examine your conscience."  ~~~ Woodrow Wilson ~~~
    • I can't help thinking that all of this would be so much easier if the doctor I went to 10 years ago would have done testing for celiac, rather than tell me I probably should avoid gluten. He was looking to sell allergy shots and hormone treatment, he had nothing to gain from me being diagnosed celiac. I've been messing around ever since, sort-of-most-of the time being gluten free but never being strict about it. I really feel like three months of eating gluten would do my body a lot of permanent damage. I've got elevated liver enzymes for the third time since 2008 and no cause can be found which might be good, I guess. I wonder if it would be reasonable to do the HLA testing first, to decide if I really need to do the gluten challenge. If the biopsy is negative, that is. Squirmingitch, love your tag line about dogs in heaven. We lost the best dog ever last December. I sure hope all my dogs are there waiting for me!
    • Most (90%-95%) patients with celiac disease have 1 or 2 copies of HLA-DQ2 haplotype (see below), while the remainder have HLA-DQ8 haplotype. Rare exceptions to these associations have been occasionally seen. In 1 study of celiac disease, only 0.7% of patients with celiac disease lacked the HLA alleles mentioned above. Results are reported as permissive, nonpermissive, or equivocal gene pairs. From: http://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/88906  
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