I have heard time and time again that it's not reliable. What does her doctor think about the test results?

My GI had this ordered for me several years ago.Waste of time and money... Not very clear- cut test interpretion or results. My consult w/ docs at Cleveland Clinic put very little credence in it and Cleveland Clinic in general, especially the reknown docs there, arent big fans. They say there are many more important and useful parameters to use in making differential diagnosis of UC vs. Chrons. Good enough for me! Hattie

Well, they did a colonoscopy and perforated her colon in the process two weeks ago. She now has a temp ileostomy. We got the results of the biopsies which all still say UC, but today the results of the Prometheus test indicate Crohn's! We are scheduled to take her to the Mayo clinic in Jacksonville next Tuesday and have all of her records and films to show them. I am so over the doctors here in our Tampa area, I could scream!!

This is what gets me so angry. For five years no mention of crohn's until this Prometheus test done a week and a half ago. We are taking everything like I said up to the Mayo clinic when we meet with that group of doctors, and I hope they can help us. Thank you for your reply!

Hi Terry,
I'm quite sure the Mayo clinic disregards this test completely.
I'm sure they will look into small bowel testing (if she's not had any) and an endoscopy before you have to decide on what to do next.
I'm so sorry you are dealing with this with your daughter (I'm sorry the Chinese Medicine thing didn't work out either - we tried it too and it didn't work for us).

The capsule endoscopy and CT Enterography are the usual and more reliable tests done to look for evidence of Crohn's in the ileum. I had a CT Enterography done, after a negative Prometheus Test, back in about 2008. The CT Enterography was negative back then, but now I have more evidence of inflammation in my ileum (based on the pouchoscopy pics which I posted a few weeks ago), and the suspicion of a Crohn's diagnosis has deepened.

So the bottom line is that none of these tests are dispositive or foolproof. What is negative now may not be in 5 years.

The best test is the capsule endoscopy, which I chose not to have done because, at the time, the capsule you swallowed was quite large and I had legitimate concerns, based on 4 prior bowel surgeries and a history of adhesions and narrowing in areas due to scar tissue, that the capsule would get hung up and need to be surgically removed. However, the capsules have gotten smaller and smaller, and if your daughter still has her full intestinal tract and no surgeries, this might be a test that can be more safely performed on her.

Interestingly, about 5 years ago when I was thinking of having the capsule endoscopy done, and totally coincidentally, my father told me one of his friends was investing in a company that made the capsule/camera. He actually had given my father a sample capsule at the time and my father, in turn, gave it to me. It frightened me, due to its size. I did not want to have to swallow something that large, but like I said, since then the technology has enabled these capsules to be made smaller and smaller.

By the ways, the Prometheus Test is not new. It was being done in 2007 and possibly earlier. More recently, some insurance companies stopped covering it because of lack of reliability.

I have not heard of this test. I do wish you all luck at the Mayo Clinic. I hope you get some good information.

The Prometheus test has been in use since the 1990s. My surgeon told me, back in 2000, that there research was flawed and he didn't put any weight on their reports. I believe the Cleveland Clinic also is skeptical of their testing.

Sue

My prometheus came back negative for either UC or Crohn's, even though all my biopsies were positive for UC. I have since been told that the test is notoriously unreliable.

I hope things go well at Mayo!

Thanks for everyone's responses! I am curious to see what the Mayo clinic doctors say about it also! We meet with them on Tuesday! Will keep you guys posted!