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My Doctor Has My Results
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8 posts in this topic

But I have to wait for her call to tell me. Will update as soon as I get the info.

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She said that my lab work was normal.

Get copies of all your results. I've many times had things reported as "normal" that were low normal, or even abnormal in the books of other specialists. If they give you a hard time or delay because they "lose" your request, remind them that you are legally entitled to the information. Sometimes threatening legal action is necessary. :angry:

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Definitely get a copy of your labs. You want to verify which tests they did. Often you don't get exactly what you think you did!

And regardless of the lab tests, if gluten-free makes you feel better, then you have your answer. You don't need a dr to agree with that!

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I had scrambled Eggbeaters and a slice of regular toast and I felt awful after eating it. My arms feel like they are on fire.

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I had scrambled Eggbeaters and a slice of regular toast and I felt awful after eating it. My arms feel like they are on fire.

Unless you are going in for more testing for celiac, you can eat gluten free. There is a physiologically separate condition called non celiac gluten sensitivity. People with this disorder have the same negative physical reaction to gluten, but often don't have positive antibodies or biopsies. This is because the molecular pathways that control NCGS activate different aspects of the immune system than celiac disease. Nonetheless, the only treatment is to be strictly gluten free, although the outlook is generally much more positive. Stop eating gluten, unless you are getting biopsies taken! I know whereof I speak, because I was just diagnosed by a celiac expert with NCGS.

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I have an endoscopy scheduled for Thursday morning. I had night sweats like crazy last night. If it is not Celiac, I really hope to find out soon.

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At least that is just a few more days! And you don't have to eat any gluten after Wednesday! :D sounds like you definitely are at least NCGI so regardless of the biopsy, ditch the gluten permanently!

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    • Thankyou I have found that I became intolerant of dairy and having cut it out feeling better but if I come into accidental consumption the symptoms are similar to that of gluten but not as severe .. Patience ay ?
    • I checked the Gluten Free Watchdog (I subscribe) and did not find this  particular product, but found the company's oat bran flakes which did not list any gluten ingrediants, but barley was found in testing well over 20 parts per million.  I would stick with certified gluten-free cereals, personally.  I think it is "hit or miss" on grain products.    
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    • I did not re-test my antibodies for a full year after diagnosis but I think your daughter should be checked again in 6 months.  If she does have celiac, and I really am sure she does regardless of what this doc seems to think, they should decrease in 6 months.  If she is fast healer, they could potentially be in the normal range but it varies from person to person. She did show damage in her small intestine but at 4 years of age, damage would not have progressed to the point where this doctor could be convinced it is Celiac.  They set the bar way too high. Kind of silly to require you to damage her insides further to prove it to the AMA. I think she should go gluten-free, as you have stated, and re-scope her in 6 months to see how the original damage looks then. If it is gone, then maybe that would convince them. The 4 out 5 criteria is not done in kids because, I am convinced, of liability issues. They just do not want to get sued if by some small chance, they diagnosed someone who did not have Celiac.  I think the odds of that are pretty slim, when you think about it. Even with a misdiagnosis, eating gluten free will never harm anyone. But as children are minors and cannot legally make medical decisions on their own like adults can, that rule is out for them.
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