Share Facebook
Crohn's Disease Forum » Tests for IBD » Blood Tests » Prometheus and other diagnostics


06-08-2011, 09:30 AM   #1
AZchi
New Member
 
Join Date: Jun 2011
Prometheus and other diagnostics

I was diagnosed with UC several years ago and "re-diagnosed" with Crohn's a few months ago (after switching to a new GI doc). My symptoms have gotten progressively worse over the years, and I now have pretty aggressive perianal Crohn's (fistulas, abscesses, etc.) and ileocolic Crohn's. Here is where I am confused. My CRP and sed rates have always been within "normal" to slightly high levels. I also had the Prometheus test which came back negative or inconclusive. Despite this bloodwork, my MRI and CT clearly shows indications of Crohn's (and I have already had surgery for the abscess and fistulas). Is this common to have no indication of Crohn's/UC in the blood but still clearly have the disease?
06-08-2011, 09:49 AM   #2
Rebecca85
Senior Member
 
Rebecca85's Avatar
 
Join Date: Apr 2010
Location: Nottingham, UK
Yes, it is fairly common. The Prometheus test is negative for around 1/10 patients with IBD, and there are many stories on here of people who always have normal CRP and sed rates, even when they're massively flaring.
__________________
Crohn's in the terminal ileum, dxed Jun '10

125mg azathioprine
4g Pentasa
06-08-2011, 07:45 PM   #3
ameslouise
Moderator
 
ameslouise's Avatar
 
Join Date: Feb 2010
Location: Pottstown, Pennsylvania
Yep, pretty common to have inconclusive Prometheus and CRP/Sed rate that are not indicative of inflammation. Sorry. I've been there and hoped that it was all a big mistake because my bloodwork was good!!
06-08-2011, 08:40 PM   #4
billyjoel
Senior Member
 
billyjoel's Avatar
 
Join Date: May 2011
Yes, the only thing that turns up positive if I flare is a biopsy of intestinal inflammation examined under a microscope and that is it. All other tests are always inconclusive for me...
__________________
I will see it when I believe it!!!!

http://www.crohnsawareness.com
06-09-2011, 07:10 AM   #5
Aloysius M
Senior Member
 
Aloysius M's Avatar
 
Join Date: Apr 2011
Location: Florida

My Support Groups:
Yeah I think it is a pretty common occurance, well at least for me anyway. I got the prometheus and colonoscopy with biopsey done within the last 2 months and the results from them said I sould be a-okay, no problems, healthy as a horse, yada yada yada, but still suffer from crohns. Basically the camera images from the colonoscopy where the diagnostic tool that my gi doc used to come to a diagnosis because everything else didn't explain symptoms.
__________________
Crohn's and IBS-D symptoms started Aug 2010
Meds:
Pred 30mg
Apriso 1.5g
06-09-2011, 12:00 PM   #6
AZchi
New Member
 
Join Date: Jun 2011
I had the same problem for years. It wasn't until I developed fistulas and an abscess (and switched docs) that they finally stopped relying on the blood tests, etc. and made a final "diagnosis".
06-09-2011, 03:32 PM   #7
xoxava
Senior Member
 
xoxava's Avatar
 
Join Date: Jul 2010
Location: North Carolina
My ibd 7 test was negative but I've had 7 colonoscopies and they all said crohns.
__________________
dx: june 2010
current meds: humira, elmiron, xanax, protonix, percocet, lomotil, phillips colon health, vitamin d,
prozac, entocort, biotin
failed meds: remicade, asacol (hair loss), prednisone (love/hate), lialda,
flagyl & cipro, xifaxan, colazol

"if you can dream it, you can do it" - walt disney
06-09-2011, 03:44 PM   #8
hopeful
Senior Member
 
Join Date: Nov 2010

My Support Groups:
Have you had a stool test for Calprotectin? It seems to be the gold standard to determine if IBD or other disease. It is soon to become the standard test in the UK to differentiate.
06-09-2011, 07:29 PM   #9
AZchi
New Member
 
Join Date: Jun 2011
Hopeful - I've never heard of that. I will look into it. Thanks for the information.
06-09-2011, 08:54 PM   #10
teeny5
Senior Member
 
teeny5's Avatar
 
Join Date: Jul 2008
Location: California

My Support Groups:
Yep my colonoscopy showed Crohn's, Prometheus test did not. Sed rate though always sky rockets for me. My heart rate also jumps when flaring.
__________________
Currently on: Colazal, Prilosec, multi-vitamin, probiotics, total EFA's, glucosamine.

Previous meds: Sulfasalazine, Asacol, Rowasa, Pentasa, Entocort.


"Adopt the pace of nature: her secret is patience. -Ralph Waldo Emerson"
06-09-2011, 10:16 PM   #11
AndiGirl
Your Story Forum Monitor
 
AndiGirl's Avatar
 
Join Date: Jan 2011
Location: Alaska

My Support Groups:
I've tested positive for Crohn's on all the Prometheus tests, one of my doctors didn't believe it and decided to check it later. I have other forms of evidence of the disease as well. This is what I was told. It's VERY HARD to get a false positive, but it is VERY EASY to get a false negative.
__________________
Diagnosed with Crohn's Disease in 2005

Pentasa 2x500mg (4 times a day)
Zofran (as needed for nausea)
Ginger Capsules (for Nausea)
Multivitamin
Zoloft 150 mg
Ranitidine 150 mg (2 times a day)
Entocort 3 mg (3 capsules by mouth for 8 weeks, then tapering to 2 capsules for three months)
06-09-2011, 10:35 PM   #12
tayandky
Member
 
tayandky's Avatar
 
Join Date: May 2011
Location: redmond, Oregon
my test came back positive but all my other tests have been negative. Weird. I haven't had my crp or sed rate tested yet. also my pillcam came back "good" which confuses me? Does it only show when you have flares?
__________________
Surgeries:
NEC- 5/1984 had all my large intestine taken out and have 84cm left of small intestine
Ileostomy-1984-1989
feeding tube-1984-1989
SBS- 5/1984
Crohn's- 5/2011

Vitamins:
Iron x2 a day
vitamin c x2 day
daily vitamin x1 day
B12 injections 1-3 months
Budesonide 3x a day
liquid potassium 2 tablets a day

-Athena
06-10-2011, 11:37 AM   #13
billyjoel
Senior Member
 
billyjoel's Avatar
 
Join Date: May 2011
Unless you have a lot of scar tissue from flares or a fistula inside your intestinal tract then the only time your test has a chance of coming back positive is if your GI tract is inflamed. It's not negative in the sense that you don't have the disease, it is only an inconclusive test when you have lots of personal anecdotal evidence to support Crohn's despite the negative test.
06-10-2011, 08:42 PM   #14
soretum
Senior Member
 
soretum's Avatar
 
Join Date: May 2011
I've been enrolled in a research study for the calprotectin test here in NZ, it's hopefully going to wipe the need for colonoscopies in diagnosing IBD in the future...how good would that be those things are just unpleasent!!
06-10-2011, 08:53 PM   #15
billyjoel
Senior Member
 
billyjoel's Avatar
 
Join Date: May 2011
That would be fantastic to have a better test but there will always be a need for colonoscopies to screen ibd patients for colon cancer.
06-30-2011, 10:00 PM   #16
Bill41
Member
 
Bill41's Avatar
 
Join Date: Apr 2011
I just had the kit sent to me to get my bloodwork to Promethieus labs for the serum 7 test, guess I need another opinion other than my GI that I have some distrust in right now.
Reply

Crohn's Disease Forum » Tests for IBD » Blood Tests » Prometheus and other diagnostics
Thread Tools


All times are GMT -5. The time now is 02:42 AM.
Copyright 2006-2017 Crohnsforum.com