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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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catfish

Blood Test Positive

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Wheat products have never, ever been a trigger for my IBS symptoms. I recently was blood-tested for Celiac as a part of the IBS diagnosis routine, which apparently is just standard procedure. Now the blood test came back positive, but what exactly does this indicate? The Dr. says that the next step is a biopsy to test for Celiac, but my question is "why?"

Surely by now, after living with IBS symptoms for 20 years and carefully documenting which foods affect me, I would have noticed some sort of connection if this was the problem, wouldn't I have? And further, wouldn't it be easier, cheaper and more practical for me to just try eliminating wheat products for a couple of weeks and seeing if I notice some improvement or not? As opposed to a biopsy that is? I guess I'm just a bit amazed that suddenly they want to take a biopsy for something that I don't really show the symptoms for having in the first place and I don't really even understand what the test results mean. As near as I can tell, a negative blood test result is supposed to be a pretty good sign that you don't have Celiac, but a positive result really doesn't mean much other than that you "might" have it. Is this correct? Please help me understand all this, I'm bewildered and befuddled by this news. :(

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Whic tests came in positive?

I know if you post them here, someone will jump in with an answer!

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I think he said it was transglutaminase antibody , he didn't say what the levels were (not that it would have meant anything to me) but he said that they were "just a little high". I really don't have any idea what this is supposed to mean other than that he indicated previously that a positive test on this would mean a biopsy. :unsure:

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Well, he probably suggested a biopsy, because that's the "gold standard" for dx'ing celiac. (And count yourself lucky... running blood tests for celiac doesn't seem to be standard in most of the US!)

I haven't had a biopsy, I went off of blood tests alone. But the thing is, depening on your symptoms - and they vary as much as IBS symptoms can - keeping a food diary may NOT have told you anything depending on how you tested foods. For instance, if you tried to avoid wheat one week, and had sandwhiches on rye bread instead, you weren't avoiding gluten at all! Or if you avoided all bread to be on the safe side, but had chinese food that involved soy sauce, you weren't avoiding gluten at all! Not to mention it being hidden in modified food starch, barley malt, "natural flavorings", and so many other things.

Assuming that when you wrote "try eliminating wheat products", and assuming you had tried this in the past, you meant all gluten containing products, then it may depend on how long you eliminated all gluten containing products. Some of us get reactions fairly quickly (I get a bit dizzy and funny headed within half an hour, and my intestines "warble" within 24 hours), but some don't. Some celiacs, silent celiacs, don't get any symptoms whatsoever, but their intestines are still being damaged. So your food diary would help, but only if you include symptoms over a long enough duration after the consumption, you eliminated all potential gluten containing products (including those envelopes I am finally remembering not to lick! ;-) ), and you are not a silent celiac.

As for the tests, someone else correct me if I'm wrong, but most of the tests can't report a false positive. The body produces an antibody (and that's what the blood test looks for) only if it is negatively reacting to something. The sources I found note that the tTg test is 90% specific, and 95% sensitive - of course, this assumes that you've got enough damage in your intestines that the antibodies created inside your intestines can leak into the blood stream.

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Thanks for that nice explanation. I spent some time doing research last night and what you said seems to correspond with what I've been reading as far as the test results. I wasn't aware that you could have prolonged symptoms and not immediate symptoms though. What I am thinking of doing is eliminating gluten from my diet right now and see if I can notice an improvement. My next Dr. visit isn't for a couple of weeks, so it is likely that I would see an improvement by then if it is gluten intolerance or even Celiac that's causing my problems, right? I think I'm going to just say "No" to the biopsy, as far as I can tell it really isn't very useful or even reliable, so why do it? If eliminating gluten is helpful, who cares what the biopsy would say? And if I have antibodies, than obviously my body doesn't like gluten or they wouldn't even be there, right? Does this sound like a logical plan, or should I just face the music and get the biopsy? Thanks so much for helping me make sense of this news. I now wish that someone would have thought to check for this 20 years ago, it might have saved me all that anguish through the years if this is indeed my problem!

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Blood tests for celiac disease tend to give a lot a false negatives. That's FALSE NEGATIVES. That is, they miss often. People have negative blood tests and still have celiac disease. The reason is that most of the antibodies are voided in stool. You have to have signficant villi damage before it will get in the blood. I opted out of the biopsy. Ask your doctor, if you did have a positivie biopsy, the next step is "improvement on a gluten-free diet". Then some doctors want you to take another biopsy to check for improvement - then a gluten challenge, followed by yet another biopsy to see if the gluten challenge caused villi damage.

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From my perspective (and I have only a postive IgA), if you have a postive Ttg then that is a pretty accurate sign of Celiac. I think the IgG and IgA are less predictive.

I would say go for the diet and see how it goes!

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I'd strongly recommend getting the biopsy and knowing for sure whether you have celiac disease. Once you are off of gluten for a while, the only way you'll be able to tell is if you do a "gluten challenge" which generally is not a good idea. Of course, I'd recommend you discuss the pros/cons of a biopsy with a knowledgable Gastroenterologist. Good luck. Kim.

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Guest jhmom

Hi catfish:

I say if you have positive blood results then there is no need for the biopsy because there is no guarantee the results would be 100% accurate. You CAN have a negative biopsy and still have it gluten sensitivity / Celiac!!!! It takes time for this disease to show up in blood-work or to damage your villi.

I hope you find some answers soon and begin to feel better! :D

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Well it's only been 4 full days since I started a gluten-free diet, and I am already noticing incredible improvement! If I'd known something like this would make me feel so much better I would have done it long ago! I don't think I could ever think about eating wheat again if it means feeling as rotten as I have been, I really forgot what it was like to feel "normal". Oh the wasted years!

The only discomfort I have had from my intestines this week has been from the increase in vegetables and fruit replacing the gluten-based snacks I used to eat- I find that it takes a lot more fruit and vegies to fill me up than it ever did snack crackers for instance, and I have had a bit of bloating from that but the spasms and other symptoms have literally vanished! Gone! Adios! I am still in amazement! :blink:

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Guest jhmom

Hi Catfish:

I am glad you are feeling better and can tell a difference being gluten free! I too forgot what it felt like to be "normal"! It

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