I was recently diagnosed with Celiac disease through a blood test. I've researched on my own and been told that the blood test markers for these particular antibodies are very specific to Celiac disease and not often a false positive.
Also, I realize that the endoscopy + biopsy are considered the "gold standard", however, it is my understanding that this biopsy merely confirms "damage" to the vili, rather than confirms whether or not I have the disease. So given that, I have no idea what in the wold "gold standard" is supposed to mean.
That said, I'm wondering if I even need the endoscopy and biopsy at all. It's rather expensive with my current insurance deductible, and if it's not going to confirm anything I don't already know, then I feel like it may be a waste of time and money. I have absolutely no symptoms, so it would seem logical that I simply bypass the biopsy and go straight to my lifelong, gluten-free diet.
It's my thinking that regardless of the outcome of the biopsy, the gluten-free diet is needed, since I've been told by two physicians that I have Celiac disease. A GI doctor told me yesterday that I'll need to go on the diet anyways whether I have the biopsy or not, so I don't see how the biopsy confirms anything. Maybe the lack of symptoms means my vili are fine...and if they aren't, they'll heal anyways after a few years of being on my new diet.
I had another, separate blood test yesterday to assess anemia, and all levels tested (not shown here) were normal, so I believe I'm good there.
My wife has been contesting everything I've heard from doctors so far, and I'm looking for clarification to these specific questions so that I may show her something in writing, rather than what I'm trying to convey verbally from a physician.
I would say don't get the biopsy done, especially since you've been told twice already that you have Celic's, but if you still have doubt so get a third & forth opinion.
I am the opposite, I had been gluten free for 6 months at least then we did the blood test for celic's and it came back negative. So I started to add it back in and my system crashed and I reacted very badly to it. (this was over 3 years ago) I have been off gluten, although not super strictly, and still having issues. So I am getting the celic biopsy done next week, but had to go on full gluten for the last month. It's been very painful to say the least. I sure hope it shows positive so I can finally put a condition to this pain, not just keeping wondering.
I have had celiac my whole life. Cut out gluten and if you start feeling better then the doctors are probably right. The problem I have found is not too many doctors know that much about celiac and they don't seem to care. So they say "yea or nah" and send you out the door. I was diagnosed because I had the biopsy done and have been told that is the only way to tell 100%, but that was 32 years ago.