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Tests Negative Every Time.


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#1 _____bee

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Posted 23 April 2013 - 05:03 PM

I have every typical symptom and have been to the doctor quiet a few times to be tested. They have only done bloodwork on me. Is that the normal way of testing? 

Is there anything else I can do besides cutting out gluten from my diet and daily life to help these symptoms subside? Thank you!


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#2 mushroom

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Posted 23 April 2013 - 05:14 PM

For every person who tests positive for celiac disease there are potentially six or seven others who have the same symptoms but test negative, currently termed non-celiac gluten intolerant because they haven't derived any other name for them (the medical profession only recognized the condition last year!).  You may well be one of them, and apart from eliminating gluten and feeling better, there is nothing else you can do.  Doctors will generally not perform the confirmatory biopsy with negative blood results and the odds that you would test negative on biopsy are pretty high.


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Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
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#3 nvsmom

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Posted 23 April 2013 - 06:48 PM

I have every typical symptom and have been to the doctor quiet a few times to be tested. They have only done bloodwork on me. Is that the normal way of testing? 

Is there anything else I can do besides cutting out gluten from my diet and daily life to help these symptoms subside? Thank you!

Yes, blood work is usually the first step. For most people that works out (but not all) just make sure they ran all (or most) celiac blood tests (DGP IgA and IgG, tTG IGA and IgG, EMA IgA, total serum IgA controltest, and possibly the older AGA IgA and IgG ).

 

Some celiacs are also lactose intolerant. That can make the same, or very similar symptoms to, gluten intolerances. Perhaps try dropping dairy for a while along with the gluten.

 

Some people are left with nutritional deficiencies too. You might want to have your D calcium, B's, iron, ferritin, and potassium checked; anemia is common too.

 

As for healing, probiotics can be helpful. Avoiding processed foods is good. L-glutamine helps with muscle (intestinal) repair and could hgelp you feel better faster.

 

Good luck!  :)


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