Crohn's Disease Forum » General IBD Discussion » Prometheus +, but asymptomatic...

11-13-2014, 07:03 AM   #1
Join Date: Nov 2014
Location: New York
Prometheus +, but asymptomatic...

I'm hoping to bounce my story off people who are familiar with IBD (and specifically Crohn's). I have a bit of an odd-ball story and am currently left sratching my head.

For some time I've been going through a series of high fever spikes (102-104) for a few days a month or persistent low "fevers" (99-100) for a couple weeks at a time. Standard bloodwork by my PCP showed (while I was very sick) elevated inflammation, positive rheumatoid factor (but just outside of normal), and low platelets (ongoing problem I've had for years). Repeated bloodwork was normal with the exception of the plateletes. However, the last few months (THANK GOODNESS!) I have not had any fevers. And no other symptoms have accompanied the fevers other than I tended to get quite ill after a bout of fevers (throat infection, sinus infection, etc).

My PCP initially referred me to a rheumatologist...but there was a 4 month wait. In the mean time she ordered a CT scan. I was SHOCKED to find that there was inflammation/thickening in my small bowel as I have always had a digestive system of steel. After the results came back I realized my timing was very poor on when I decided to go in for the CT scan as it was about a week after I had a bout with a nasty stomach bug (yay for kids in daycare!). Although I was referred to a GI doctor I was pretty confident that after an appointment or two we would come to find out all this was a false alarm.

The GI doctor ordered and x-ray with contrast, and numerous other bloodwork including a Prometheus test. I was reassured when the radiologist commented to me that everything looked a-okay on the x-ray. Yesterday was supposed to have been my follow-up, however, it was cancelled due to some issue with the doctor. Rather annoyed that the next appointment was not being rescheduled for another month I asked to be called to discuss the labs (unacceptable in my opinion to make a patient wait 2 MONTHS for a follow-up for lab work).

The nurse who called me back confirmed that the x-ray with contrast looked fine.....................but then dropped the bomb on me that the Prometheus test came back positive with a "pattern the indicates you have Crohn's." So here I am left with extreme frustration and confusion about this whole thing, especially after doing research and discovering the high level of false positives (and negatives) for the Prometheus test.

I can't help but feel in the absense of any other GI symptoms and a abnormal CT scan that could be explained away by a GI bug (and subsequently confirmed by an x-ray) that doing the Prometheus test was not appropriate. Because from the small amount of research that I've done we are now going to be heading into rather invasive testing.....which seems all for naught considering I have no symptoms that point to having IBD of some kind.

However, perhaps I am in denial about this whole process. Am I missing something major here? What are the chances this is going to play out and I get diagnosed with Crohn's at the end of the day? This is not disease that should be taken lightly. If they do not find anything else to support Crohn's is the doctor going to still fall back on this Prometheus test being positive for trying to push treatment or a diagnosis?

Another issue I have is that I severely disliked the doctor that I saw. He was, quite frankly, the essence of a pompous you know what and I've never had a doctor speak so condescendingly to me. The only reason I even scheduled a follow-up with him is because I (incorrectly) assumed I'd have one more appointment and be done with him. So any advice on sticking with him for the time being or seeking another doctor STAT would be greatly appreciated.
11-16-2014, 07:32 PM   #2
Join Date: Nov 2014
Location: Missouri

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Well, let me start by saying that I hope you find some answers soon, and that I hope you have something easier to treat than Crohn's!

I will admit that I don't know very much at all about the Prometheus test - I'm not sure that it was even around when I was diagnosed, so I'm going to leave that part of the question alone. However, in my opinion, it would be worth having more testing done so that you can figure out for sure what is wrong with you, even if it does have to be a bit more invasive, like a colonoscopy or upper endo. They're mostly really not that bad, especially if it gets you answers. I know for me, the scopes were what finally got me diagnosed after 5 years of suffering.

However, if you really don't like and/or trust the doctor, I'd definitely try to find someone else. It's an important relationship, and the fact of the matter is, if you don't value this particular doctor's judgement, you'll be less likely to trust the diagnosis and follow the treatment plan. If you want a second opinion, I'd say 100% to go for it. A good doctor-patient relationship makes a huge difference, especially if you're going in for more than just an annual check-up.

I wish you all the best! I'd love to hear once you get it figured out.
Dx: Crohn's Disease, SpA, May 2004 (age 11); POTS, 2012 (Age 19)
Currently taking: Remicade (Crohn's); MTX (SpA); Florinef, Midodrine, Klonopin (POTS); Iron (Anemia)
Past Meds: Prednisone, 5-ASA, 6-MP, Imuran, Flagyl, Bentyl, name it!
Other issues: POTS, SpA, Anemia
11-16-2014, 08:23 PM   #3
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An xray is generally not a good tool in determining thickening or problems with the bowels. Due to that, I'm not sure how much emphasis I would put on that result. As far as Prometheus, it isn't used as the standard of diagnosis since it does have incidence of false positives. I'm not saying that it isn't a good complimentary tool.

Usually, a colonoscopy/endoscopy is the standard with CD. But with the CT showing thickening in the small bowel it would depend on where in the small bowel as to if the colonoscopy could reach.

As far as imaging, an MRE(magnetic resonance enterography) could be performed which is clearer than xray. Also, a pill cam can be utilized for the small bowel.

But first I would start of with a fecal calprotectin stool test, it shows inflammation in the GI tract and isn't invasive.

There are members here with CD that are asymptomatic. My son had CD located in his small bowel and though he had flared before he had been asymptomatic with active disease. This leads to small bowel surgery.

I would just get a second opinion.
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara

Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira

Crohn's Disease Forum » General IBD Discussion » Prometheus +, but asymptomatic...
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