CF Carrier with Daughter who passed away at age 26 from CF
When I was young I had allergies to grass, mold, dust, cats, and dogs. In my 20’s I got allergy shots which helped and then took allergy pills as I got older.
My symptoms as a carrier
While my daughter was alive I was overall healthy as a D508 CF carrier. The sweat test was negative. In my 60’s I was diagnosed with mild scleroderma. Then chronic loose stools and diarrhea started. After seeing two different gastroenterologists and negative tests for lactose intolerance, Crohn’s disease, IBS, and following Mediterranean Diet, SIBO, etc. Colonoscopy was fine. I still have diarrhea for over two years. Now I have been diagnosed with other autoimmune issues and scoliosis. Could these be related to CF carriers?
Looking for answers
I use Imodium, follow Brat diet, take fiber, but diarrhea or loose stools always return. I did get the doctor to prescribe Creon which helps a bit. I find that any doctors I talk to about CF carriers having symptoms, are not aware of this or say that since I am in my 60’s I just have age-related issues.
Can anyone relate?
Is there a CF center that actually will see a CF Carrier and discuss or treat these symptoms? Univ. of Iowa? FYI, My Irish mother and Irish Grandfather both died of Colon Cancer, I am sure they were carriers. Thanks for bringing up CF carrier symptoms.
Have you (or a loved one) been experiencing any negative side effects from Trikafta?