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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.

Well The Dr Called...
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Quincypp    1

I am so mad at myself. I was in a meeting with my boss and my phone rang - of course it was the dr calling me back. She said the blood tests came back negative for celiac - however the best way to diagnose is biopsy doing an edoscopy (which i had done last year but not checked for celiac - i don't htink they did any biopsy of the intestine. Also I haven't really been digesting a lot of gluten since on the atkins diet. She was surprised the iron infusion she gave me didn't give me a "big boost" of energy. I said yeah i feel a little better but its not like I suddenly feel great. I asked if i would be getting any more iron and she said no the dosage she gave me will bump up my hemaglobin to 140 and thats enough - i was at 128. However I thought the point of the iron was to get my iron and iron stores up which were both at 5. Anyway the reason I'm mad is cause I didn't ask her my questions - guess I was caught off guard with calling while i was with my boss. I also didn't say much to her - i was like a deer in the headlights! So i go back on March 1 for my follow up. She wants a copy of my last endoscope and a celiac disease copy of the actual gallium scan that came up positive for inflammation in my marrow - not the summary but the actual test so it can have a second opinion. I do see my family dr in January i will talk to him too - he also said if i wasn't consuming gluten it could come back negative. I wanted to ask for a copy of the blood results but forgot - so will call back to get a copy faxed to me - so I can see what she tested for. i did ask how long for the folate to kick in (I am on supplements) she said that would take a month - so i might just have the double whamny of o low iron and low folate causing the fatigue. Mind you - still don't know why i have such low values since my diet is very rich in both. I also wanted to ask to test my other vitamin levels to see if any other levels are low. Guess just more waiting.

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tarnalberry    314

Call back with your questions!

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mommida    158

Yes. You need to call back and get more tests done.

It is possible you have Celiac disease. (You may not have consumed enough gluten before testing.) You could opt for genetic testing (not a perfect test either, you can have the 2% known miss rate, human error rate for blood test is 30%, so don't fully believe the 99% accurate statistic) It is possible you have Celiac and another related disorder.

Severe anemia will land you in the hospital pretty quick. I don't think you should put off any further testing for causes. (i.e. Pernicious anemia)

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tom    75

...

...human error rate for blood test is 30%, so don't fully believe the 99% accurate statistic

...

Human error rate?? :huh:

I'm not sure what this is supposed to mean & can't think of any way it makes sense. Is it saying that lab techs are inept, spilling/contaminating samples or losing vials?

I just keep saying "human error rate" in my head, thinking maybe some way to interpret it will percolate forward.

30% is literally an unbelievable number & I'm extremely curious about the details & where it came from, if you don't mind.

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peeptoad    7

The false-negative rate (maybe that's what mommida means) is about 25-30% and that's documented in a lot of medical literature...it's not really human error from what I understand, but just a diagnostic error for that particular lab test.

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From what I understand Celiac and maybe even NCGI makes it harder for us to absorb iron. I am a red meat eating fool with a load of vitamin C to help it go down and still have to take iron pills to keep from cramping so bad I wake up screaming with leg cramps. Plus I load on Black Strap Molasses too.

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