# Prometheus Test - Questions?



## keepsmiling21 (Mar 18, 2011)

Hi Everyone!

I just have a quick question and I'd love to hear what you guys think. 

I had a Prometheus test done about 2 months ago and everything came back normal. Despite this I have symptoms like Crohn's or UC (bleeding so its not IBS) and both my GI and Endocrinologist keep saying it seems like Crohn's...but because the test showed negative they refuse to believe it. 

Have any of you been officially diagnosed despite the fact that a Prometheus test did not point to Crohn's? 

Kait


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## AndiGirl (Mar 19, 2011)

My Prometheus lab tests all (I had more than one) came back positive for Crohn's Disease.  In addition to some physical findings on scope procedures, it helped with my diagnosis.  I have heard of people with very visible Crohn's Disease (found via scope procedures), having tested negative for Crohn's Disease.


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## margie (Mar 19, 2011)

Kait,
I had many x-rays, colonoscopies, endoscopies, as well as a lot of blood work of which mostly all were normal.  The only way that I was diagnosed with Crohn's was with the pill cam which found it in the small intestine


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## keepsmiling21 (Mar 19, 2011)

That's good to hear (sort of). 

I have a CT scan next Tuesday and if that comes back normal then I'm going to have the pill cam. Hopefully that will provide some answers.


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## Rebecca85 (Mar 19, 2011)

The prometheus test only has around 80-90% accuracy, meaning 1 or 2 people in every 10 with IBD will test negative. It's not a definitive test, just one of the things a doctor might look at to make the diagnosis.


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## tiloah (Mar 19, 2011)

I was gonna say, my doc ran the test but he didn't seem to put much faith in it. Sort of a, "Well if it comes back positive, that's one more bit of evidence in support." I believe it has a relatively high incidence of false negatives and false positives. In any case, I don't think it should be the determining factor in a diagnosis by any means. It should be interpreted in light of other information (like the fact that your GI tract is effing bleeding?).

Sorry. Went off a bit there. I hope you get some answers! Maybe seek a second opinion?  You deserve treatment for whatever is going on.


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## keepsmiling21 (Mar 19, 2011)

Don't apologize for going off. I think we all just have to sometime to let some steam off. I'm hoping that the CT scan or pill cam will show something else otherwise I'm going to be very upset.


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## AndiGirl (Mar 19, 2011)

I was told that it was very rare to get a false positive, but very common to get a false negative.  Weird!


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## ameslouise (Mar 19, 2011)

Both of mine came back inconclusive as to whether I had UC Or CD. And it is my understanding also that the test is not 100% indicator, just another diagnostic tool.

- Amy


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## JetWhite (Mar 20, 2011)

I wasn't told the name of the test I had but I know that a blood test indicated I had inflammation so I was scheduled for a colonoscopy 3 weeks later.

During the colonoscopy they took a biopsy and then, eventually I received the diagnosis of UC. I assumed it was the biopsy that gave them the answer

I have read posts where people have gone through a whole load of tests and it's taken ages for a diagnosis. I don't understand that and really sympathise with you

I hope you get answers soon


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## tiloah (Mar 21, 2011)

keepsmiling21 said:


> Don't apologize for going off. I think we all just have to sometime to let some steam off. I'm hoping that the CT scan or pill cam will show something else otherwise I'm going to be very upset.


Fingers crossed they find what's there to be found!


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## tiloah (Mar 21, 2011)

AndiGirl said:


> I was told that it was very rare to get a false positive, but very common to get a false negative.  Weird!


I wasn't 100% on the false positives so what you were told is probably correct and I was mis-remembering. Thank you for correcting my mistake. That is good information to have! (And I try not to spread inaccurate info).


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## AndiGirl (Mar 21, 2011)

I'm going by what my GI doc. has told me.  I hope that I'm not spreading inaccurate information.  I am trusting that the gastroenterologist has done his research.  Hehehe!


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## Mayflower537 (Mar 22, 2011)

I think you're right, Andi, about the false positives being rare and the false negatives being more common.  I appear to have gotten a false positive b/c scopes showed no evidence of disease at all.  Let's hope it was a false positive!  Like someone above said, it's just a piece of the diagnostic puzzle, and as the test has a questionable reputation anyway, it would probably never be the diagnostic end-all.


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## tiloah (Mar 22, 2011)

AndiGirl said:


> I'm going by what my GI doc. has told me.  I hope that I'm not spreading inaccurate information.  I am trusting that the gastroenterologist has done his research.  Hehehe!


I meant I probably mis-remembered, so if that's what your GI said it's probably correct. As you said, hopefully he's done his research!


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## Sparkle2012 (Apr 10, 2013)

I have been struggling with this search for Crohns for 1 year now.  Last year I was scheduled to start the Humira and I went to another doc with some questions about Humira (the "expert") and he said I didn't have Crohns markers.  Many tests later, including an emergency bowel resection, they have determined that I have no markers for inflammation and these ulcers are due to overuse/abuse of aspirin for migraines for years leading to inflammation leading to scarring leading to strictures....chronic constipation....bowel flora out of whack due to years of antibiotics for rosacea - it was mentioned that even fecal matter lodged behind strictures can cause ulcers. I no longer have any symptoms since the strictures were removed. I did the Prometheus last week and it was suggested if those results come back clean, I can rest assured this is not Crohns.  Wish me luck all.  My fingers are crossed really HARD.  It's been a year of hell.


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