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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.

Feeling Insane, Pre-Diagnosis, But On Track
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Hi! I'm Jen and I might not be crazy.

I've been struggling with weird symptoms for years and years, I'm 31 now and strange things have been happening since I was a little baby. As a baby I was treated as though something was wrong, the older I got the more I was told I was nuts and my symptoms didn't make sense.

Over the last couple of years I've been feeling worse and worse. Test after test after test after test. Testing for lupus, rheumatoid arthritis, thyroid disorders and much more.

I was tested positive for Hashimoto's disease, and I thought I finally found the answer, but I met with an endocrinologist and he told me that regardless of having incredibly high anti-thyroglobulin antibodies, that my thyroid function is normal and that none of my symptoms are related. However, today he ran the blood tests to see if I have Celiac disease.

Now I'm just terrified that this isn't the answer and I don't know what else to do.

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Hi Jen, and welcome, and you probably are not crazy :) However, you are amongst many who have been told in their former lives that they were crazy. Fortunately, most of them did not believe it and went on to find out what was really wrong.

I am afraid you just have to sit tight and hold on for the test results to come back. You might try reading about how to do the gluten free diet in the meantime because I have a sneaking suspicion that this is information you might need.

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Hi Jen, and welcome, and you probably are not crazy :) However, you are amongst many who have been told in their former lives that they were crazy. Fortunately, most of them did not believe it and went on to find out what was really wrong.

I am afraid you just have to sit tight and hold on for the test results to come back. You might try reading about how to do the gluten free diet in the meantime because I have a sneaking suspicion that this is information you might need.

Well, at least I've discovered I'm very patient ("Patience" is tattooed across my knuckles). I've had to wait years just to have the appropriate thyroid tests run, what's another couple of days waiting on blood results?

I just can't believe how many "ah ha" moments I've had by reading articles on this site and by browsing some posts on this forum. I feel like I finally have a doctor going in the right direction.

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Well, at least I've discovered I'm very patient ("Patience" is tattooed across my knuckles). I've had to wait years just to have the appropriate thyroid tests run, what's another couple of days waiting on blood results?

I just can't believe how many "ah ha" moments I've had by reading articles on this site and by browsing some posts on this forum. I feel like I finally have a doctor going in the right direction.

You are going to need that patience, both with yourself and others, if your tests come back positive, or even if you trial the gluten free diet if they are negative. And the Ah ha moments continue - I still have at least one new one every day :rolleyes: Yes, patience is a virtue designed especially for celiacs, and those without it have a hard time. Bonne chance on your test results.

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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  
    • This is not quite as cut & dried as it sounds. Although rare, there are diagnosed celiacs who do not have either of those genes. Ravenwoodglass, who posted above, is one of those people. I think she has double DQ9 genes? Am I right Raven?  My point is, that getting the gene testing is not an absolute determination either way.
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