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Advice Needed


ka07722

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ka07722 Newbie

Background:

I am really looking to find similar experiences, I have been going to the Doctors since Aug 14th with pain that has not gone away and nobody wants to do anything. The pain goes from being tolerable (most of the time) to hardly able to walk it hurts so bad. I have had a scope, they found gastritis, reflux and Hpylori but the GI says that is not causing the pain. The H Pylori was treated with triple therapy for a week. I have had Xrays (inluding bowel follow through), Ultrasound (lower Pelvis because they thought it was ovaries), and a CT Scan. Everything so far has come up fine on the tests, i am extremley worried because the pain has not gone away,

Any ideas would be appreciated. Also, since he did not biopsy for Celiac, I had the blood test done two weeks ago (had been gluten free for a week or so) and it turned out to be negative. My DR told me that I would have had to stop Gluten for 6 mths for that test to be negative, I dont believe her from what I have read.

Update:

My symptoms have improved 80% since Gluten free, how can I determine if I have celiac or just a wheat intolerance?


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Gfresh404 Enthusiast
Background:

I am really looking to find similar experiences, I have been going to the Doctors since Aug 14th with pain that has not gone away and nobody wants to do anything. The pain goes from being tolerable (most of the time) to hardly able to walk it hurts so bad. I have had a scope, they found gastritis, reflux and Hpylori but the GI says that is not causing the pain. The H Pylori was treated with triple therapy for a week. I have had Xrays (inluding bowel follow through), Ultrasound (lower Pelvis because they thought it was ovaries), and a CT Scan. Everything so far has come up fine on the tests, i am extremley worried because the pain has not gone away,

Any ideas would be appreciated. Also, since he did not biopsy for Celiac, I had the blood test done two weeks ago (had been gluten free for a week or so) and it turned out to be negative. My DR told me that I would have had to stop Gluten for 6 mths for that test to be negative, I dont believe her from what I have read.

Update:

My symptoms have improved 80% since Gluten free, how can I determine if I have celiac or just a wheat intolerance?

Try a gluten containing grain such as barley or rye. If your symptoms return you know it is the gluten bothering you and not just wheat.

At first I thought it was just wheat bothering me since I noticed improvements when I avoided wheat but it ended up being gluten. So if you want to find out quickly, I suggest you eat a lot of barley and rye. Good luck

nora-n Rookie

That is wrong, there ate lots of examples of negative blood tests with positive biopsies.

Which tests were done?

ka07722 Newbie
That is wrong, there ate lots of examples of negative blood tests with positive biopsies.

Which tests were done?

Im sorry I have no idea, she didnt go over it other than to say it was negative.

Is there anything that I can request now being gluten free for a month?

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      Genetic testing cannot be used to diagnose celiac disease but it can be used to rule it out and also to establish the potential to develop celiac disease. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% actually develop it. To develop celiac disease when you have the genetic potential also requires some kind of trigger to turn the latent genes "on", as it were. The trigger can be a lot of things and is the big mystery component of the celiac disease puzzle at this point in time with regard to the state of our knowledge.  Your IGA serum score would seem to indicate you are not IGA deficient and your tTG-IGA score looks to be in the normal range but in the future please include the reference ranges for negative vs. positive because different labs used different reference ranges. There is no industry standard.
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