I need advice on mixed Prometheus test results.

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farcry
Regular Member


Date Joined Oct 2009
Total Posts : 25
   Posted 10/6/2009 3:30 PM (GMT -7)   
I've been having some cramping an hour after eating that comes and goes with altering diarrhea and constipation so my dr ran the Prometheus IBD 7 test at my request because I've been worried about the possibility of having IBD.
 
I got my results today and it said "Pattern Not Consistent with IBD", which sounds great. Then I read on down and it says my Anti-OmpC and Anti-Cbir1 were abnormal. Not knowing what that means I try looking up some stuff online and it says that it means I do have Crohn's but that's confusing because Prometheus says I don't. I don't know if I should be worried or relieved. So far my other tests have come back normal. This is the only abnormal finding I've seen so far. Should I be worried about this?
 
My results were:
asca iga 12.3/<20.0
asca igg 15.9/<40.0
anti-ompc 31.2/<16.5
anti-cbir1 37.9/<21.0
autoantibody <12.1/<12.1
ifa perinuclear not detected
dnase not detected

beave
Veteran Member


Date Joined Mar 2007
Total Posts : 1091
   Posted 10/7/2009 11:55 AM (GMT -7)   
What other tests have you had that have come back normal?

The Prometheus test is pretty accurate but not always correct, so it's best to use it in conjunction with other tests (colonoscopy, CT enterography, capsule endoscopy, etc) to determine whether or not you truly have Crohn's.

farcry
Regular Member


Date Joined Oct 2009
Total Posts : 25
   Posted 10/7/2009 2:50 PM (GMT -7)   
Recently, I've had many blood tests, small bowel follow and a few years ago I had a colonoscopy and a CT, which have been negative. In light of this I'm going to ask for the pill cam when I see my GI next month and maybe if I need a new colonoscopy.

What concerns me is how I test positive on two markers but test negative for IBD? What result should I listen to? The main test result that said negative or the assay info that shows I have two abnormal markers? I feel confused, relieved and worried all at the same time. For now I guess it means I need more tests.

Has anyone else had this test and got positive markers but negative for ibd?

beave
Veteran Member


Date Joined Mar 2007
Total Posts : 1091
   Posted 10/7/2009 3:21 PM (GMT -7)   
It's not terribly uncommon to be positive on an individual marker or two and yet still have the overall result come back as "Pattern Not Consistent with IBD." That happens quite often.

That's because the determination of whether you have IBD or not depends not only on the individual markers compared to reference levels, but also on the levels of the different markers compared to each other. It's a complicated formula they use for the overall determination of whether or not you have IBD. And, again, their formula is pretty accurate but not 100%. Their formula ends up being wrong for about 1 out of 10 to 20 people.

I would ask to do another colonoscopy, and then perhaps a capsule endoscopy or CT enterography (which is essentially a newer, higher-resolution version of the small-bowel follow through).

chrisnsteph1022
Veteran Member


Date Joined Apr 2003
Total Posts : 973
   Posted 10/8/2009 6:20 AM (GMT -7)   
I didn't see my test results, but the doc said it was negative for IBD. However, biopsies from my scope were positive for Crohn's. So it definitely can be wrong. I don't know anything about the individual markers, though.
Stephanie, 29, married for 10 wonderful years and mommy to two awesome toddlers
dx with Crohn's 4/2003, in remission from 11/2003 to 7/2009
omeprazole 40mg, zoloft 100mg, apriso 1500mg, dicyclomine 3/day
dx with bipolar II 8/2009, re-diagnosed with bipolar I 9/09
Apparently allergic to lamictal...waiting on next rx


beachkat
New Member


Date Joined Oct 2009
Total Posts : 4
   Posted 10/8/2009 3:29 PM (GMT -7)   
For three years, I've had problems with my stomach. It bloats out after every meal to the size of a 6 month pregnant woman's belly. I've learned there are certain foods I can't eat including chicken, turkey (food allergy tests confirmed this), anything spicy, and most recently bananas. If I do eat these foods, I have a painful stomach attack which usually lasts 3-4 hours. During this time, I have to lie down and mostly just cry to ease the pain until its over. I've had an endoscopy, colonoscopy, numerous cat scans and MRIs. (I also had a HIDA scan to rule out the gallbladder). While the endoscopy showed acid reflux and one cat scan showed a loop of small bowel that was swollen, there was not much else to go on until my doctor ordered the Prometheus IBD Serology 7. My doctor was surprised to find the results stating that the Pattern is Consistent with IBD and Crohn's Disease.

Even though this test has come back positive, he isn't entirely sure that I have Crohn's Disease. I asked him what the chance is that I have Crohn's Disease or that I will get it eventually based on this test and he said 40-60 percent. I have a capsule endoscopy scheduled for this Monday and he hopes to find more answers. I certainly do not want Crohn's Disease, yet I am tired of having to take test after test and not receiving many answers. I'm wondering if anyone else has had all tests come back negative and then the Prometheus Test come back positive for IBD. Has anyone else been diagnosed based on the capsule endoscopy? Thanks:)

beave
Veteran Member


Date Joined Mar 2007
Total Posts : 1091
   Posted 10/8/2009 4:25 PM (GMT -7)   
Beachkat, I'd say your chances of having Crohn's is much higher than 40-60% and closer to 90%. That's based on the sensitivity of the IBD Serology 7 test being around 90%, plus the fact that you mentioned a CT scan showing an inflamed loop of small bowel -- meaning that you've had a test come back positive in addition to the IBD Serology 7 test.

The capsule endoscopy might show more. One bit of concern: If that inflamed loop of bowel you have is narrowed, the capsule could get stuck, requiring surgical removal. I would recommend a patency capsule first (a test run with a capsule that will dissolve on its own if it gets stuck), or I would recommend putting off the capsule endoscopy and instead doing a CT enterography first.

beachkat
New Member


Date Joined Oct 2009
Total Posts : 4
   Posted 10/8/2009 5:17 PM (GMT -7)   
Beave, thank you so much for your speedy reply. Its comforting to know that other people out there have experienced similar issues and are knowledgeable about this disease. The cat scan I had that showed the inflamed loop of bowel was taken at an emergency room visit about a year and a half ago. I had gone there because I had been having stomach attacks all week and my stomach was actually stuck in a very bloated position. As soon as I arrived, they told me they were pretty sure I was pregnant, which I quickly and adamantly denied. When the pregnancy test came back negative, they then immediately thought it was appendicitis. To make a long story short, they said it must have been an ovarian cyst that ruptured since they found free floating fluid in my pelvis and mentioned that this was probably what caused trauma to the bowel and caused it to swell. I found this all very confusing since I was sure my stomach attacks were food-related all week.
This emergency visit jump started a chain of doctors appointments to various specialists over the year and has had my gastro baffled. He didn't seem too concerned over the loop of bowel that was swollen in the small intestine, yet it seems to me that this may be a small piece that fits somewhere in the puzzle of what has been going on in my body.
Since this was a year and a half ago, do you think I should still be concerned about the capsule getting stuck also considering all the problems I've had in the past year? I will make sure to ask my doctor about it when I go on Monday. The 90 percent chance of having it does concern me, yet I have to say that I've been preparing myself. I also experience joint pain and very dry eyes, which my doctor says could be related to Crohn's Disease. Thanks again!

vitaka
Veteran Member


Date Joined Jun 2006
Total Posts : 887
   Posted 10/8/2009 5:57 PM (GMT -7)   
Beachkat, I was diagnosed with Crohn's three years ago based off of a pill cam and subsequent colonoscopy. Then last month, I showed no signs of disease anywhere (based off of an upper endoscopy, small bowel follow through and colonoscopy). My doctor sent out blood for the Prometheus test and it came back showing patterns consistent with UC! It makes no sense to me. The Prometheus test is supposed to be ~92% accurate, so there is room for error, but not a whole lot.

Also, the joint pain and dry eyes are consistent with IBD, but they can also be because of something else. I know how hard it is to keep having tests and getting no answers (as that is where I am now too), but keep pushing for more tests. Only once you know what is going on can you be effectively treated.
29f, PhD student, originally diagnosed with Crohn's in 2/06.
10/09: Prometheus test shows results consistent with UC
Rheumatologist appointment 10/12 to address severe joint pain
Currently taking: 2g Pentasa, 20mg prednisone, 150mg Trazadone, multivitamin, vitamin D, magnesium, probiotics


beachkat
New Member


Date Joined Oct 2009
Total Posts : 4
   Posted 10/14/2009 2:01 PM (GMT -7)   
Thank you for the advice Vitak. So, I had my capsule endoscopy on Monday and received my results already. Completely NORMAL. I'm at the end of my rope--I've had stomach pain associated with certain foods for two years and still no answers. I guess my Prometheus results meant nothing because apparently there is no sign of Crohn's Disease anywhere in my system. I'm glad I don't have it, but I'm left confused and upset that I still have no answers and I'm back to square one. So in my case, I guess the positive Crohn's Disease Prometheus Test results didn't make a difference. So far it seems all I got from those results is confusion and an even deeper hole in my pocket after what I had to pay for the test.

jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1812
   Posted 10/14/2009 3:41 PM (GMT -7)   
beachkat, so sorry you are not getting any answers. I think many of us have been in your shoes. I was told I had IBS for 20 years! If you are a woman, they blow you off for being hysterical. I even had one doc tell me to get a hobby when I reported bloody diarrhea. I live in southeast Georgia, what else can I say? Anyway, eventually the truth will come out. You may be having symptoms earlier than the tests are showing up. Has the doctor given you any antispasmodics to see if that helps your symptoms? Have you tried a fiber drink? I hope you get some answers soon. I know it is frustrating!
diagnosed 1/09 with "diverticular colitis" ?? location, sigmoid colon
localized scleroderma & IBS, low thyroid
 50 +  female
 colazal, fish oil, synthroid, zoloft, VSL#3 probiotic.
Blood test positive for Crohn's for whatever that is worth-:)
 


beachkat
New Member


Date Joined Oct 2009
Total Posts : 4
   Posted 10/14/2009 5:05 PM (GMT -7)   
Thanks for the kind words Jeanneac. My doctor has given me some medicine to calm a stomach attack once it starts and Nexium for gerd. A fiber drink is probably something I should try. I do hope that I get to the truth eventually, even if it takes a few more years! Thanks again:)
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