This website has been a great help to me, knowing that others are having some of the same problems, and giving me some new ideas on how to cope with UC. I don't post all that often, but I read through the forums daily...there are some really great people who hang out here. I'm wondering about people's experiences with the Prometheus blood test...how reliable is it in diagnosing UC or Crohn's? Has anyone had a misdiagnosis based on Prometheus tests? I ask because I recently had the test done, and it contradicted a diagnosis made twice through colonoscopy and biopsy. Here's my story...
I was diagnosed with moderate UC a couple of years ago after a prolonged c diff infection. The diagnosis was made after a colonoscopy, and they put me on Asacol and a probiotic. Ever since the diagnosis and starting the Asacol, I've been feeeling really run down, have a lack of energy, and completely lost interest in everything that I had previously enjoyed. Other symptoms at the time were stinky gas and cramping, constipation, near constant hunger, and an extremely itchy rash on my legs. Based on what I've read in this forum, those symptoms do not describe typical UC stuff. I started seeing a new GI doc a couple of months ago and he sent me in for some blood work, including a Prometheus test. He also did a couple of other blood tests which showed a high level of antibodies related to allergies. Together with my symptoms, we came to the conclusion that I was allergic to the Asacol I'd been taking religiously for two years. So he had me taper off the Asacol to start off with. When my Prometheus results came back, we were both surprised to see that according to my blood, I was 94% NOT consistent with either UC or Crohn's. While I was somewhat relieved by this, it made me wonder how after two 'scopes and biopsies I was misdiagnosed.
Since I stopped the Asacol, I've been experiencing incredibly painful gas cramps and bloating, mucousy, bloody, loose stool, plus the number of daily BMs has increased to the point that I've worn a path into the carpet the leads to the bathroom, both at home and work. I've started taking Immodium to help me get through the work day, but after a couple of days of that, my bowels express their displeasure rather painfully. I'm trying a new diet to help with this...I call it the "Nothing in = nothing out" diet...it is pretty self explanatory I think. It works fairly well. I do drink a lot of water and Gatorade so I don't dehydrate. All of this reminds me of my original c diff infection, but from what I've read, it resembles UC symptoms as well. To be honest, aside from the digestive distress, I don't feel all that bad, if that makes sense. When the Asacol was out of my system, it almost like a cloud had been removed from my brain.
My doc says that all this recent stuff can also be caused by an allergic reaction, but to what we don't know. I'm going in for blood work again next week to see if the allergy antibodies are still present. If they are gone, it was most probably the Asacol that was causing me to feel run down. If they aren't gone, it is something else. None of this helps with my current underlying GI problems though, especially if the Prometheus test is foolproof. I'm guessing that I'll end up getting another c-scope to confirm/disprove the Prometheus test.
Thanks for listening to my long-winded tale of woe.