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Blood Test Negative


Jodster72

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Jodster72 Rookie

Hello there everyone. Well the doctors office just called and said my blood test was in normal range. They were not very familiar with the test itself but said that the normal range was less than 10 and that my level was 1.6.

I'm not that familiar but with all the signs, symptoms, etc I really thought the test would be a positive. Not to mention two positive biocard celiac tests:( they were faint positive but judged as positive . I've eaten no bread, pasta or oats for a year however hav still been getting small amounts of gluten.

This seemed like the answer to everything with the past history of celiac as a child(via stool test) and array of problems I've had last year with the reactiv hypoglycemia and adrenal fatigue. Now I think the doctor will just go back to the approach where she doesn't know what it is etc:(

Feeling very let down but hoping these blood tests can be wrong. What do you think??


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mushroom Proficient

Obviously, they only ran one of the five tests, probably the tTG (tissue transglutaminase). It is possible to be negative on some of the tests and positive on others. Also, if you were eating no bread or pasta, you probably were not getting enough gluten. I am not very familiar with the biocard test and its degree or reliability so can't comment there. ND's use the stool test but it seems like most MD's disregard its validity. So although you were diagnosed as a child, it was not with a test that MD's tend to accept. So it does leave you in an awkward place in regards to testing.

Since you already don't eat pasta or bread, my feeling is that you should accept the childhood diagnosis (and no, you don't grow out of celiac -- if you had it then you have it now) and just go totally gluten free right now.

MitziG Enthusiast

Couldn't agree more. Once a celiac, always a celiac. Blood tests only catch it some of the time. Diagnose yourself, and feel better!

nvsmom Community Regular

I diagnosed myself with a Biocard test (which tests ttg IgA) and had a very faint positive; in a dimly lighted room you could barely see the line. When the doctor had my ttg IgA tested it went above their normal high limits so I believe the Biocard tests are fairly reliable. But if you are going gluten-lite, that can affect your results and give false negatives...

If you were diagnosed as a child, and had two positive Biocard ttgIgA tests, I would say that you ae a celiac. If you want to test further, you'll have to eat much more gluten that you are now, and keep it up for a few months. If you are celiac, that will cause you to be ill though so I think you should probably start eating completely gluten-free without any gluten at all. I was shocked to discover how little gluten it takes to make me ill once I had gone gluten-free; you'll need to cut it out of your diet entirely. Once you take the leap, a gluten-free diet isn't as hard as it sounds. Honest. :)

Best wishes. I hope you feel well soon.

Jodster72 Rookie

Thank you very much ladies:) in my heart I am sure it is celiac as it all makes sense. Too many yes you have it and no you donts and now the body is breaking apart. I am going completely gluten free and hoping that adrenals and all the rest start to heal. I am meeting inter nest at hospital on Saturday at one and I am going lush that he start the bloodwork to check for deficiencies and adrenal fatigue, etc as well as ask for some fluids and vitamins via iv as I've now become dehydrated as well.

This celiac is a real complex bugger of a thing but together we will all get thru.. Xo

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    • rei.b
      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
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