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Problems with new doctors believing you have it.

Leila airhart
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Leila airhart Newbie
Leila airhart
Posted

Hi! I moved to a new city and found a new gi doctor. I have has celiac since I was a child, got better in teen years and came back severely in my early twenties after my large colon was removed. I did the diet got better. New surgeon thought I could eat normal... endeto dd up in the hospital for 5 months trying to straighten my gut out with 6 liters coming out me a day. I was put on tpn and heart medication for being tacy and malasorption. I went on a journey for them to decide  I had it.  Now I'm 43 and new thinks again I dont have it. I'm negative for the blood test of the familiar type and negative on thhinge new test because I have been on a gluten free diet for twenty years that is very strict. He thinks this means I dont have it and could have something else. Anyone else every had this problems. He thinks these breath test will tell something.  I already know I am lactose intolerant. Someone please help me with some advice please.  Any welcome! I dont think these new tests tell everything. 

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Scott Adams Grand Master
Scott Adams
Posted

Welcome to the forum!

So if you were diagnosed with celiac disease as a teenager you still have celiac disease, it is a lifelong disease that doesn't go away. It goes into remission when you are on a gluten-free diet, and if you go off it, the disease will return, as happened in your case. 

A breath test would not be how to diagnose celiac disease, a blood panel after you have been eating gluten daily for 4-6 is the proper way to test for it:

 I am not sure why your doctor would not believe that you have celiac disease based on a blood test AFTER you've been gluten-free for so long. The blood tests will be negative for celiac disease if you have been gluten-free, which is normal, and does not mean that you don't have it.

trents Grand Master
trents
Posted

The breath test was probably mentioned because it can be a key in diagnosing Small Intestine Bacterial Overgrowth (SIBO) which is a condition often found in conjunction with Celiac Disease. Have you frequently been on antibiotics during your life or long term proton pump inhibitor therapy?

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