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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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Dr Won't Tell Me Test Results?!?
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10 posts in this topic

My dr order a tTG test on September 28. As of Thursday October 11 it wasn't back yet. I called today to ask if the results were back yet and his receptionist was so rude to me and told me that the results are back and everything is fine and the dr would have called me if there was a problem. But I want to know what the actual number was. I paid $65 for the test so I think I deserve to know what the numbers were. She was so rude to me I don't want to call back. :( Should I just trust that it was negative and everything is fine?

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My dr order a tTG test on September 28. As of Thursday October 11 it wasn't back yet. I called today to ask if the results were back yet and his receptionist was so rude to me and told me that the results are back and everything is fine and the dr would have called me if there was a problem. But I want to know what the actual number was. I paid $65 for the test so I think I deserve to know what the numbers were. She was so rude to me I don't want to call back. :( Should I just trust that it was negative and everything is fine?

Is there someone else you can talk to? I always ask my doctor's office for a copy of the results and have not had a problem getting them.

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Call back, ask them to send you a copy of the results. Period. You have legal right to your medical records.

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You might also try email, if you have their website you could use the 'contact' option perhaps, or if you have an email address for them, use that if you don't want to call, asking for the specific test results. Then give it a few hours to see if you get a response. Then email a 2nd request, or call.

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Your doctor needs to know about his receptionists rudeness. If you are in the US you have a legal right to copies of all tests. Call back and ask to speak to a nurse and tell the nurse you will be coming in to pick up the results or ask the nurse to make sure they are mailed to you. Do you have an appointment scheduled for follow-up? If you do then talk to your doctor about this incident and if you don't have a follow-up scheduled you may want to make one.

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Call back, ask them to send you a copy of the results. Period. You have legal right to your medical records.

Actually, this is not so clear in Ontario. The doctor who ordered the test owns the results. I have never had a problem getting actual specifics, but it isn't clear that I have a legal right.

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My husband picked up a copy of the results and it is definitely negative. A positive is greater than 20 and mine was 6. I am actually disappointed. I have all of the symptoms of celiac so I am really shocked. I have a biopsy scheduled but they want to do a colonoscopy at the same time and I am too stressed over that so I am considering cancelling the whole thing. I am feeling very disheartened right now. My husband says just try going gluten-free anyways but I don't want to bother without a real diagnosis. I know myself and there is not way I'll be able stick to it if I know I don't really need to be. Not to mention not having a diagnosis to tell family when they ask why I am not eating gluten.

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Sometimes there are false negatives. And sometimes folks have non-celiac gluten intolerance. The only diagnosis for that is response to the gluten-free diet. I think it wouldn't hurt you to try going STRICTLY gluten-free for a couple of months. If your symptoms improve, you will know you either have celiac or intolerance.

And if you have trouble with your family, send them here to read about it, or get them some info from other reputable sources. BOTH of these conditions are very real, and it would be a shame for you to remain sick and possibly get even worse just because your family didn't believe you.

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I know you have been through a tough time just getting this doctor to test tTG-IgA and don't wish to make you jump through more hoops. I just want to make sure you understand that one tTG IgA test is not enough to rule out Celiac Disease or NCGI if you have symptoms.

As I see it, you have four choices:

Have your doctor order full celiac blood work - without a Total Serum IgA, the tTG IgA doesn't give a clear picture. The full panel will give you a much better picture.

Have the endoscopy and make sure the doctor takes at least 6 biopsies of the small intestine - the changes in early celiac cannot be detected without these biopsies. I understand the apprehension of going in for a "double-ender" - I was not thrilled with the idea, but I can tell you it is not a difficult procedure and having them both at the same time rules out many causes of your symptoms. I had one double and I do not remember anything about the colonoscopy and had absolutely no memory of anyone even lifting my gown.

Skip any further testing and remove ALL gluten for at least three months to monitor for improvement. If your symptoms improve significantly, perhaps your doctor will diagnose NCGI and you will have an official diagnosis to report to your family.

Do nothing and wait for symptoms to potentially get much worse. Mine did and I'd hate for anyone to get worse when they might already be on the right track to improving their health.

I do hope you are able to find some answers.

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