When I went gluten free, I had no insurance, and no money for testing. My sister had been diagnosed celiac 4 months before, and there was no dount in either of our minds that gluten free would help me too. That was 9 years ago. I do wish I had the money then to know if I have celiac or not, but there has never been any doubt in my mind that gluten is my enemy. A year or so after I went gluten free, a university in Chicago was asking for people to test for celiac, they called my sis and asked if she knew anyone who wanted to be tested. She told them about me, they told her I would have to eat gluten for at least 6 weeks for the testing. She told them there isn't enough money in this world to make me eat gluten again...she's right. We both had been so ill for so long...both with diarrhea all the time, she losing way too much weight, me gaining, her iron deficient, me with neurological symptoms...no doubt we both had celiac.

My neuro had a celiac panel done last year. Of course, after 8 years gluten free, the blood work was not going to show high levels from gluten. The gene testing came back double DQ1, which to most doctors means celiac is not possible. Some doctors aren't so sure that genes make a difference. At any rate, I am gluten intolerant, and super sensitive. I no longer eat any grains because of the CC problems.

Has your neurologist ever tested your B12 level? By the time I finally got to this neuro, I had been taking B12 for over 3 years, so testing now can't be conclusive to a deficiency. In June he told me to continue with the 5000mcg of B12 I take daily, my neuropathy is finally showing some improvement.