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MsCurious

Wow, I Just Got An Email Reply From A Research Doctor At Mayo Clinic, Rochester, Mn

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Mayo Clinic gastroenterologist and celiac disease specialist Joseph Murray, M.D just sent me an unexpected email, which really says a lot about what they do and don't know about Celiac.

I sent a thank you note to him, for making a professional lecture video directed to other physicians, regarding Celiac Disease. I sent it to my doctor to make sure he knew that the tests he ordered for me were outdated, and no longer used by Mayo Clinic doctors to diagnose celiac disease. Anyway, in the letter, I told him my results and that I didn't understand them, and he sent this note back:

"The tests your doc did were negative for celiac disease however if you had already reduced gluten in your diet they may not be accurate. If the testes were done on a regular diet then celiac disease is unlikely. genetics don't add much really and can be rather confusing even for experts. Your father should ask his Mayo doctor about testing for celiac disease. their Mayo doc can readily contact me.

This is not medical advice."

Joe Murray

WOW... to me that says, "we, the experts, are still unsure and still researching how genetics play a part in diagnosing celiac disease". I'm beginning to think I am one of the non-celiac gluten sensitive/intolerant people. So, I'll talk to my doctor after the results are back, but probably will go gluten-free for a month and see if it makes the difference I'm hoping it will. Very short tests (a few days at a time) of going gluten-free have really made me feel better during those times. And I feel so lousy when I eat gluten again. So... I'm probably one of the non -celiacs who suffers from the gluten intolerance that they are still trying to figure out.

It was so nice of Dr Murray to even take the time to respond to my thank you note!!! What a great guy... and a really wonderful research doctor!

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Considering the complexities of the human body and the things it is expected to break down, it isn't surprising. The problem occurs when people assume that they know everything, and that if they can't quantify it, it doesn't exist.

I'm glad to see that some people are trying to break through the barriers that previous theories have put up in so many doctors' brains!! :)

Best of luck with your diet, I hope you feel better.

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Considering the complexities of the human body and the things it is expected to break down, it isn't surprising. The problem occurs when people assume that they know everything, and that if they can't quantify it, it doesn't exist.

I'm glad to see that some people are trying to break through the barriers that previous theories have put up in so many doctors' brains!! :)

Best of luck with your diet, I hope you feel better.

Thanks! I'm seeing more and more about NCGS (non-celiac gluten sensitivity) and I'm starting to think that's what I have. Couple more days for test results and then probably gluten-free diet, once doctor gives okay ... and yes, hopefully I'll feel much much better! :) I hope they figure all of this out real soon, so EVERYBODY can feel better! This is definitely not on my top billion fun things! ;)

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