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Blood tests from prometheus labs for IBD

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Crohn's Disease
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Posted 8/15/2009 2:34 PM (GMT 0)
Has anyone had any experience with the prometheus lab tests for IBD? I was diagnosed with diverticular colitis back in January. Long story and I don't agree with the diagnosis. Anyway, I got my PCP to do the lab tests and they came back positive for crohn's dz. with a fairly high titre. I usually hang out on the UC side since I have colitis but was interested in what the crohn's folks thought about these tests. While I feel it is basically academic. I think it is good evidence that I do not have diverticular colitis. Five years ago I had inflammation in my colon and no diverticulum.  I was not completely cleaned out for the colonoscopy and they said it was normal, that I had IBS.  When I got sick back in December, a CT scan said I had diverticulitis.  When they treated with two different rounds of antibiotics, I didn't get better. I went to another doc, got a colonoscopy and that's when they said it was diverticular colitis. When I started on colazal, I started feeling better in time. Ok, so that is my story. I appreciate any opinions on the lab tests.
Posted 8/15/2009 2:55 PM (GMT 0)
From my understanding, the Prometheus tests are supposed to be fairly accurate, but an actual biopsy is the best diagnostic tool. I think it should be possible to have diverticulitis and Crohn's. I noticed that you have scleroderma, which is another auto-immune disorder. Many people with one auto-immune disorder are at risk for others. I think if the colazal helped you then you should advocate to continue on it. When I was first diagnosed with Crohn's, it was from finding bleeding ulcers in my small intestine on the camera swallow, and my colonoscopy was normal A later colonoscopy found Crohn's in my ileum. I had a positive Prometheus test too. Good luck...I hope this helps!
Posted 8/15/2009 4:14 PM (GMT 0)
Thanks so much for the response. Interesting to see you are in my age group too. Sometimes I think of crohn's as something you get diagnosed with at a younger age.
I have received some responses on the lab tests on the UC side but they were not positive. I do like hearing about the course of other people's diagnosis and disease history. We are all so different. At least my last doctor wanted to keep me on the colazal for a year. I will have a follow up apt at that time. I want to keep taking it. so we'll see what they say in December/January. Thanks again.
Posted 8/15/2009 7:04 PM (GMT 0)
I was diagnosed after having the prometheus test in conjunction with a CT enterograph and colonoscopy with biopsies. All three came back suggestive of Crohn's.

My titer on the prometheus test was extremely high for one antibody (Cbir-1) and my GI at the time tried to push me towards aggressive treatment, which I declined. If you have ever had a severe urinary tract infection, that exposes your immune system to the Cbir-1 antigen. So, the result of Cbir-1 is questionable.

The prometheus test is a useful tool for difficult-to-diagnose patients, but it is not the final word. I believe there are some people on HW who had a false negative from it, and a false positive is possible. I think, as Gumby mentioned, seeing a specific result in the biopsy is the "gold standard" for a Crohn's diagnosis.
Posted 8/16/2009 4:44 AM (GMT 0)
Glad someone pointed out the scleroderma. It may be that you don't have Crohn's at all, but rather something called SIBO (Small Intestine Bacterial Overgrowth). Scleroderma is a specific disposing factor for developing SIBO and the symptoms of SIBO are much the same as for Crohn's. For more, see: MedicineNet.com

PS - Diabetes also is a disposing factor for SIBO

Post Edited (Keeper) : 8/15/2009 10:52:30 PM (GMT-6)

Posted 8/16/2009 12:34 PM (GMT 0)
My husband had the Prometheus test when his doctor couldn't figure out if he had Crohn's or UC. Our insurance didn't cover it, so we paid the $340 out of pocket. The result: inconclusive.

So unfortunately, it didn't do much to help us :(
Posted 8/17/2009 5:31 PM (GMT 0)
My first Promethius test said (with 90-something percent accuracy, according to it) that I have UC, but I was eventually diagnosed with Crohn's (after an original diagnosis of indeteminate colitis).  So, I don't know how accurate they really are.  And husbandhascrohns is correct - a lot of insurance companies say the test isn't medically necessary and try not to pay, even if your dr. tells them it is necessary and why.  I fought my last one for months and eventually got it written off by insurance after threatening to report them for price gauging. 

Posted 8/18/2009 12:40 AM (GMT 0)
Did you suspect that you had crohn's before the biopsies came back positive? How long did you have indeterminate colitis before the diagnosis changed to crohn's? My doc said that my colitis is related to diverticular disease. I disagree. I had the colitis before I had the diverticulatr disease. The diverticular disease is a result of being constipated from the colitis that they kept telling me was IBS! Now that I am on colitis meds, I can go to the bathroom like a normal person. The meds are similar, so I guess I will just hang in there. Thanks for the reply Zena WP.
Posted 8/18/2009 1:54 AM (GMT 0)
My only advice - be prepared to pay for it yourself. It is not covered by insurance.
Posted 8/18/2009 1:59 AM (GMT 0)
Mine covered it, believe it or not.
Posted 8/18/2009 3:37 PM (GMT 0)

6 years ago when I had mine done, my insurance covered it 100% - thankfully.

Ironically mine came back with no diagnosis - thankfully my GI at the time went by my Colonoscopy biopsies, SBT, and labwork to diagnose - he did tell me that (at that point) that he wouldn't make the final diagnosis from Prometheus test and that my result was wrong.

Just my story

Posted 8/18/2009 3:44 PM (GMT 0)
My insurance also covered it. I think it depends on your provider.
Posted 8/19/2009 5:11 PM (GMT 0)

jeanneac, I'd been having problems for about 7 or 8 years before being diagnosed with anything (other than IBS or a bad gallbladder).  I still don't think they diagnosed me with anything based on the promethius results alone, but they did a capsule endoscopy and then diagnosed me.  I don't remember how long they were saying it was indeterminate.  They said I had symptoms of both.  Eventually, I noticed they started writing Crohn's instead, but I also switched GIs a few times in a couple years, so I don't remember when the dx changed. 

As for the warnings about insurance not covering the test, I had three promethius tests previously that were all covered by insurance without any fight at all.  I was still with the same company and, as far as I knew, the same plan, but the last test got denied.  When I contacted insurance, I was told that our employer had changed their insurance plan number and that it was no longer covered.  So, you can have coverage for that test and then lose it without even knowing anything has changed.   

Posted 8/19/2009 8:19 PM (GMT 0)
I had the Serology 7 test earlier this summer. My C-Bir1 was abnormal at 39/21 but my test came back not ibd. According to my doctor the C-Bir level isn't enough by itself to predict ibd and of all the levels it's the least accurate to predict because it has more false positives than the other levels. Supposedly, prometheus looks for a pattern with all the levels that's in the blood which matches a patterns found in most people with ibd. ASCA is the most common marker found in people with crohn's and ANCA is the one mostly associated with uc. Note that I use the term "most" because most isn't 100%, just like this test. However, from what i hear it's about 90%.

If you're worried it might be crohns my advise is to have other tests run like a small bowel follow through, colonoscopy and maybe the pill cam test. Those would allow the doctors to examine your full gastro track and if something's not right they're bound to see it. If those come back positive for crohn's and the serology did too then there's no doubt. However, if they come back negative then it's possible maybe the serology test was wrong. At any rate, I would trust the tests I mentioned above more than serology because serology is still somewhat new and isn't meant to be a substitute for those other tests. Bottom line, if I were you I would want the other tests.
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