Sally, because it is so rare, doctors are reluctant to diagnosis it. It took 5 CT scans in 5 months to get my diagnosis and only after they ruled out every other possible cause. I had endoscopy and colonoscopy, every conceivable blood and stool test, etc.

My recommendation is to keep pushing for answers. I got a lot of "Let's wait and see if it goes away on it's own" during my journey to a diagnosis. I refused to take that as an answer. I was miserable.
I saw 2 primary care, 3 Gastroents, and an infectious disease doc all during the Covid outbreak and over a 5 month period of time.