Blood work only? I have been on a gluten controlled diet for 15 years. Blood work is unreliable. I need a stool sample test.
How gluten-free have you been over the last 15 years? If you haven't been eating gluten for such a long time I don't think even the stool test will be accurate. Enterolab says 1 year off gluten can still provide positive results..I don't think there is any guarantee though. 1 year is a long time and 15 years is a REALLY long time. Have you read the FAQ on Enterolab's site? I think they say in this type of scenario the gene testing would be of more help. If you've been eating some gluten I guess you could still try with the stool test.
Sorry you've been through so much....I had to become a pain to my doctors as well..it was the only way to get them to do anything. In the end they never helped. All of the months that I was at my worst and had lost 25 lbs. they never sent me to the GI or even considered Celiac. I was tested once at MY request but I'd already started a gluten-free diet and didn't know any better.
They are running all the celiac tests now including the biopsy but its too late cuz I've been gluten-free 5 months now.
Even more frusterating is that I was so sick for 3 years with no answers and all these miserable symptoms. Today I find out my roommate who has the same HMO (different city) is getting tested for the full celiac panel. She has NO symptoms whatsoever...she's healthy but went to the doctor for the flu she had last week. Her liver counts were high and she was sent to the GI right away...He's testing her for lots of things including celiac disease. What the heck!
I was 94 lbs. and couldn't even hold my own head up and my mom had to cry and beg them to send me to the GI after 3 whole years!!! I still to this day have not had the full celiac panel!! I'm very upset about this.
My roommate is laughing and saying I have "celiac panel envy"....which I do!!!
Anyways the panel is meaningless to me now that I'm gluten-free...I wont go back on gluten for the tests so even though they're going to test me now...it'll just be negative.
Sorry for the rant....I just needed to get that out.