Hi thisis my first post - I'm so grateful that i can talk to others who have some experience that are not doctors. I'll just start at the begininng. i had a bone density scan 2 years ago and my naturopath tested me for low vitamin D and iron which were both very low. My levels have come to normal with mega vitamin doses. i take 5000iu of Vit D. She thought it might be caused by gluten sensitivity. So I got tested at entero labs and yes i was a 53 for fecal antigliadin test. so i went gluten-free for 2 weeks and felt great. But i still didnt totally trust the diagnosis, i wanted it to be black and white. My friends and family were asking if i needed be as strict and maybe i was just taking this thing too far.
Then i went to my regular doctor who thought that i should be tested for celiac and to go back on gluten for a month and get tested properly. I thought that it would be a worthwhile investment to get a proper diagnosis because i thought it would help me to stick to 100% gluten-free. ( and stick up to family and friends) I fear i would feel better and then slowly start " cheating". I "pushed" gluten for a month because i just wanted to do this once and then have it be black and white. my blood work was TTG IgA (S) less than 3. IgA (S) was 425 and my gliadin IGA (S) was also less than 3. My GI told me since the TTG level was basically non existant that i there was a 90% chance that i did not have celiac. But he would do a biopsy if it was really important for me to know why not just reduce gluten ?

I dont know if i should pursue it ? or just go gluten free without a diagnosis of celiac.

I would hate to just go gluten free when I still dont know why i was so low in my vitamin levels and bone density.
Maybe i am just gluten sensitive and do not have celiac disease. and i could test my vitamin levels and have my bone density scans every 2 years to moniter. Maybe i dont need a doctor to tell me not to eat any gluten. Does this appear to be sound thinking about this ? samor

30% of people with celiac disease, but without total villious atrophy will have a false negative blood test. It is possible to also have a false negative endoscopy and still react to gluten (some people have no intestinal symptoms but brain symptoms). Unfortunately for many of us, there isn't a definitive answer that is readily accepted by the average doctor.

Personally even though I don't have a definitive diagnosis by endosocopy yet my body and brain gave me strong evidence that it is much happier gluten free. I can mess around being partially gluten-free but what if they find out 10 years from now that it really is poisoning those of us who are "only gluten sensitive" and I end up with blood or bowel cancer or more autoimmune diseases? I'd rather err on the side of caution and just call myself a celiac even though I haven't totally earned the diagnosis. My health is more important to me than convenience.

There isn't any black and white out there.

I am one of those who had all negative blood work and my biopsy showed villi blunting so not as severe damage as some but my symptoms were terrible, headaches, fatigue, muscle aches, jerking, tingling legs, dizziness. I was so happy to know that there is a possible solution to all of this. I don't know if I have an official diagnosis from the doctors, even with a biopsy, but the diet is making a difference. And as far as friends and family thinking you might be taking it too far, as far as I can tell so far (only 1 month into it) it is so easy to get cc and make mistakes so you can't be too careful - they'll get used to it. Good luck with your decisions!

My DD's Ped GI told us that bloodwork can be neg, biopsy can be neg and you can still have Celiac. The best indicator is the gluten-free diet. If you feel better gluten-free, then stay on the diet.

I was positive for the antibody blood work and negative on the biopsy. However, a completely gluten free diet has made 95% improvement for me in less than a month. Mine is one of the gray cases where I didn't have 100% medical proof. The diet is what convinced me. No way am I going back to feeling fatigued, sick, and miserable again. Even if it means I can't eat a lot of things I'd like too. It comes down to a matter of choice * shrugs *

Very well put. Trusting neg blood tests almost cost me my life and delayed my diagnosis by many painful years leaving me with residual brain and nerve damage that is most likely permanent. Your bodies positive reaction to a gluten free diet is the best diagnostic test there is. Even my GI has said that our methods of testing for celiac are woefully inaccurate too often to be relied on. Of course he also misdiagnosed me for years and never thought to tell me to try the diet it was an allergist and an elimination diet that really saved me, he just confirmed and apologized for missing celiac.