"no objective findings of celiac"
I've been gluten free since 2010. I was 18. I'm turning 35 this year, so essentially half my life. I was originally "diagnosed" by my endocrinologist at the time, who didn't perform an endoscopy.
So, 16 years later, when I started having severe stomach issues*, I go to a GI doc at my GP's referral. She puts on the notes "confirmation of celiac disease" as a reason.
So they do the blood test. Negative. "But that could be influenced by you having been gluten free."
Endoscopy/colonoscopy to deal with the more acute issues. Inflammation definitely exists. They take biopsies.
Call back today. No significant clinical findings. Including nothing indicating celiac. Again, get the "could be impacted by you being gluten free." But then he ended the call with "I have no objective findings to confirm a celiac diagnosis. So if you wanted to try to reintroduce to your diet, and if it causes symptoms you may have a mild intolerance but there's no cause for a celiac diagnosis."
I am trying to process the emotions this is giving me.
First off, I fully believe I *do* have celiac. We've had what my husband calls "triple-blind studies" of a family member giving us a spice that none of us knew had wheat, and I reacted immediately and severely. My grandmother died due to idiopathic intestinal bleeding. She'd bleed internally, and no one could find the source, so they'd treat/transfuse. Over and over until she died. (This would've been before I was born so before celiac was widely known)
I've wondered for years if I should pursue a more solid diagnosis. I've avoided it, because I assumed any tests wouldnt be reliable due to my being gluten-free, and I didn't think it was worth it to go back on gluten for an extended time just to get the dx.
But now I feel like I've gone backwards. My health in general has been a struggle the last few years as I've been seeking diagnosis of another autoimmune condition that's greatly impacting my life. Getting a solid dx there has also been a fight, so this just makes me feel like the whole venture is useless. Just time to throw in the towel and live in misery because getting solid answers just won't ever happen.
I don't know what to do now. Do I go back on gluten and try to pursue a more accurate test? Just pretend this never happened? Will the fact that my medical files now have not just a lack of diagnosis, but a negative diagnosis come back to bite me later?
Lots of emotions swirling right now. Life feeling a little out of control at the moment.
*Stomach issues I'm now confident were caused by a med prescribed by neurology that Ive discontinued and the stomach issues improved greatly.