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Tested Neg But Still Wondering
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...how long do you have to be eating gluten-y foods in order to have an accurate blood test? I took gluten out of my diet and my symptoms (chronic fatigue, bone and back pain, bloating, gas, diarrhea AND constipation at times, mental fuzzines) have gotten better. I fell off the wagon, so to speak, and went on a gluten binge and all my symptoms returned even worse. It's now been almost 3 weeks without gluten this time around, I'm feeling a bit better but I just got tested and it came back in the normal range. How accurate are the blood tests and could the fact that I haven't been having gluten make a difference? I'm reluctant to go back to gluten just to get another blood test, but I really think that gluten is the cause. Any expertise or input would be appreciated!

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Yes, I believe that could have given you a negative result. Unfortunately, both the blood test and the biopsy require you to be ingesting gluten for an appreciable time prior to the test in order for them to be accurate.

I would recommend that if you are not already seeing a gastroenterologist, that you find one experienced in Celiac Disease and explain your symptoms and the fact that you got better when going gluten free. You can then ask how he/she would like you to proceed to get accurate diagnostic tests. Presumably, you would have to go back to ingesting gluten for a certain amount of time prior to testing.

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THe blood test are not fool proof and for some people it takes time for the disease to register in the blood or damage the villi in the small intestines (per my doctor). So regardless if you start back on gluten again and have blood-work or a biopsy it could ALL come back negative and you could still have celiac disease.

In my opinion there are 4 ways to be disgnosed:

1. through blood-work

2. through a biopsy

3.an improvement on a gluten-free diet

4. stool panel test from Enterolab, these test are more sensitive than blood and you do not have to be on gluten for them to be accurate. It is also noninvasive and simple.

I do hope you find some answers soon! Take care :)

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