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Crohn's Disease Forum » Tests for IBD » Blood Tests » Prometheus Test - Questions?


03-18-2011, 10:09 PM   #1
keepsmiling21
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Prometheus Test - Questions?

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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"A smile confuses an approaching frown."
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"Here is the test to find whether your mission on earth is finished. If you're alive, it isn't."
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Current Medications:

Asacol 400 mg - 3 pills 3x daily
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03-18-2011, 11:18 PM   #2
AndiGirl
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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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Diagnosed with Crohn's Disease in 2005

Pentasa 2x500mg (4 times a day)
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03-18-2011, 11:26 PM   #3
margie
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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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Margie

Diagnosed with Crohn's Disease 2005
At this time have no GI doc and on no meds.
03-19-2011, 12:35 PM   #4
keepsmiling21
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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.
03-19-2011, 02:35 PM   #5
Rebecca85
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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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Crohn's in the terminal ileum, dxed Jun '10

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03-19-2011, 02:51 PM   #6
tiloah
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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.
03-19-2011, 05:01 PM   #7
keepsmiling21
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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.
03-19-2011, 09:01 PM   #8
AndiGirl
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I was told that it was very rare to get a false positive, but very common to get a false negative. Weird!
03-19-2011, 09:51 PM   #9
ameslouise
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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
03-20-2011, 10:43 AM   #10
JetWhite
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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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Diagnosed with Ulcerative Colitis October 2009

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03-20-2011, 11:17 PM   #11
tiloah
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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!
03-20-2011, 11:19 PM   #12
tiloah
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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).
03-21-2011, 02:23 PM   #13
AndiGirl
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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!
03-22-2011, 09:26 AM   #14
Mayflower537
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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.
03-22-2011, 05:45 PM   #15
tiloah
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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!
04-10-2013, 05:20 PM   #16
Sparkle2012
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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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Chronic Stomach pain, Gerd, Anemia. Rosacea, Migraines, Skin Issues
Longterm Prilosec/Antibiotics
Chronic C&D, blockages
Doc:"chubby=not Crohns"
GI #1: Pillcam, DX Crohns Humira ordered
GI#2: NOT Crohns; cancel Humira. pillcam stuck X6 wks! RX Entacort!
11/2012 ER SM bowel stricture resection/GB
GI#3: End Entacort. RX Pentasa! Flu symptoms. joint pain follow-neg RA
4/2013 Prometheus Positive/Crohns
Markers flat post surgery
Chronic Arthritis
No Crohns symptoms
On Pentasa
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