u/beccaboopspoop

I’ve been experiencing intermittent abdominal pain for the last few years. Sometimes I’ll go months without a bad episode, and then have multiple episodes a week for a few couple months. Gallbladder and thyroid checks all came back clear.

When I was at my PCP on June 8th for my yearly appointment, my NP offered to do a celiac screening just in case. They took my blood and sent it off to the bigger hospital to run the test. That same evening, I saw the results get added to the hospital’s file for me (not my PCP’s file. My Tissue Transglutaminase Antibody was 123.4 U/mL, with the normal range considered <15 U/mL.

I was shocked and immediately started doing some research. I learned that diagnosis typically required a biopsy, and many websites suggested that there would be some small intestine damage based on my ttga levels. I also started connecting other symptoms I’ve been experiencing: the extreme fatigue, a rash on my hands and arms I thought was eczema that resembled the celiac skin rash, my brain fog and depression.

However, it took until last Friday (June 19th) for my PCP to finally follow up on these test results. All I was told was that I likely had Celiac and to switch to a gluten free diet to see if that helped. No resources, no diet help, nothing. I asked about the endoscopy and biopsy, but my NP didn’t think it was necessary.

Has anyone else had similar experiences for getting diagnosed? I feel disappointed that my PCP didn’t provide any type of support and is just leaving me to figure things out. I was dealing with a lot of anxiety for that week and a half I was left waiting and was (and still am) worried about the potential intestinal damage I may have caused. I’m still not sure how “bad” or severe my levels are or how strict I need to be with my diet.

I followed up with my gastroenterologist separately (who specializes in Celiac), and she immediately had me schedule a biopsy for next week. I’m hoping she’ll be able to provide more information and resources if I do have Celiac.