Prometheus test and misdiagnosis?

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Veteran Member

Date Joined Dec 2006
Total Posts : 517
   Posted 8/15/2008 10:29 PM (GMT -6)   
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 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" 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.


Regular Member

Date Joined Aug 2008
Total Posts : 28
   Posted 8/15/2008 10:35 PM (GMT -6)   
My daughter's Prometheus test came back "inconclusive" so I guess it is not foolproof. I was quite surprised by this as the Dr. had presented the test to us as the "end all" regarding the diagnosis. They are saying that her illness was most likely UC due to the symptoms. She has had the pouchectomy and is doing well. Good luck to you.
Dx UC 1979 at age 14 - (I know, some kind of record)
Was Mildly Chronic (flares every couple of years) until last 2 years now Chronically Acute
Can only get about a month symptom free between flares now
Asacol, Canasa, Rowasa, Cortifoam (on Sulfasalazine for 28 years previously also Pred)
GI Doc recently told me I have "lead pipe syndrome" which is advanced scarring of colon
No surgery - multiple colonoscopies reveal uc "from rectum to appendix"
My Best Friend is My Shih Tzu/My worst enemy is uc

Hans C
Regular Member

Date Joined Dec 2006
Total Posts : 89
   Posted 8/15/2008 11:27 PM (GMT -6)   
Hi I don't really know anything about this - but, 94% doesn't give much certainty. Sorry for stating the obvious but that leaves 6 people out of every 100 with your prometheus diagnosis having results "consistent with UC/Chrohns"... I hope yours really is not UC/Chrohns and you're not in limbo for much longer

age 26  ------------- diagnosed 2004 (probable left sided)

Multi-vitamin                                       Lactobacillus acidophillus sachets
Aloe vera - Omega3 fish oil                    Asacol (8x400mg)                     
Iron, folic acid and b12 supplement__________________________________________________ 

Regular Member

Date Joined Apr 2007
Total Posts : 385
   Posted 8/15/2008 11:58 PM (GMT -6)   

Nothing in the medical world (or anything for that matter) is 100% foolproof. Even biopsies, x-rays, sonograms, etc., can be read incorrectly. In our case, our son was originally diagnosed with Crohn's when he was 16 by a Bay Area doctor. This was the givien diagnosis because of the condition of his colon (just the scope touching different areas would cause more bleeding) and the results of the biopsies which said 'IBD' as a diagnosis. Not real clear there.

He recently had another scope done by his new GI who said that he didn't think it was Crohn's due to the fact that few Crohn's patient's bleed (more of a UC thing) and that he now had ulcerative proctitis (also UC), whereas a Crohn's patients has to deal with terrible fissures and/or fistulas which UC patients don't normally get.

Needless to say, we decided to go ahead with the Prometheus test to see what it would say. Came back as UC, so that's what we're sticking with. It's the same tests that a GI would order (ANCA, ASCA, etc.) with a couple of added tests that go through an algorithim for the final result.

Breast Cancer at 37; bilateral mastectomy with reconstruction.
Colon resection 2004; Sub-Total colectomy September 2007 for colonic inertia - didn't work.
Son with UC; taking Asacol and 6MP with Prednisone and Rowasa added during flareups. Recently diagnosed with ankylosing spondylitis - now on Humira. Canasa now added due to UP.
Husband with ankylosing spondylitis and psoriatic arthritis.

Elite Member

Date Joined Mar 2003
Total Posts : 10407
   Posted 8/16/2008 12:19 AM (GMT -6)   
I've heard the test isn't terribly reliable. I've never had it done, my GI doesn't think it's reliable enough to be worth the cost.
Judy - Southern US 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.

Veteran Member

Date Joined Feb 2006
Total Posts : 5698
   Posted 8/16/2008 9:45 AM (GMT -6)   

No, NEVER NEVER rely on the Prometheus test to conclusively determine which form of IBD you have!!!!  I have met people who had their Prometheus test indicate Crohn's disease and upon pathology of their excised colon it turns out they have UC and vice versa.  There is no conclusive test to differentiate between the two diseases, it takes a number of tests eg., biopsies, blood, upper and lower scans, AND patient symptoms (be very candid with your GI) to determine the diagnosis.


dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free

Regular Member

Date Joined Dec 2007
Total Posts : 354
   Posted 8/16/2008 11:34 AM (GMT -6)   
Mine came back neg for crohns and UC - my doctor says they are just wrong sometimes.
Jessica 27/F 20mg pred
dicyclomine 10Mg as needed
Citalopram 20 MG
omeprazole(for acid reflex)
Tried (Entorcort EC 9ml/day and Prednisone, Asacol ,colazal, Culturelle)

Veteran Member

Date Joined Dec 2006
Total Posts : 517
   Posted 8/18/2008 3:19 AM (GMT -6)   
Thank you to everyone for the reassurance. I had the feeling the promethues wasn't all that reliable, but it really helps to hear it from others.
Diagnosed w/ moderate UC in May '06, had symptoms for years prior to dx

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