Just found my 7 year old tested postive for Crohn's on Prometheus Serology 7 Test

I am brand new to this forum and to understanding crohn's at all. Last week was the first I'd heard of the disease when my 7 year old son received a blood test back. It was the Prometheus ibd Serology 7 test and it stated that he was showing a "pattern consistent with IBD: Crohn's Disease."

Previous to this our son (who is named Cam) had only a persistent but mild stomach ache that he could ignore easily -- but that did not go away for the last 8 weeks. Other than that he seems so healthy and happy.

We got the basic blood test results last week and the specific results today.

Our main pediatrician is not available to go over this in detail and he suggested all further work happen with a GI he recommended. We are set to meet with this new pediatric GI, but have an excruciating 7 weeks while we are left not knowing several things. (Fortunately Cam is in almost no discomfort).

Any thoughts on these two questions would be so helpful:

1. Are there good numbers on how accurate a predictor the Prometheus ibd test by itself is as a predictor for Crohn's? I'd read varying statistics from 95%+ accurate to folks speculating as high as 30% rate of false positives when done without other testing or screening first. We just don't know -- but suspect it is at best highly likely that Cam has the disease and that we won't know for 100% until a true GI specialist does physical biopsies.

2. Can someone here help us understand these Test numbers? Cam tested back with:

ASCA igA 13.4 EU/ml
ASCA igG 12.0 EU/ml

Anti-OmpC 6.3 EU/ml

Anti-CBir1 100.0 EU/ml

AutoAntibody 12.1 EU/ml

IFA perinuclear Pattern NOT Detected
DNAse Sensitivity NOT Detected


Thank you all, this seems like such a good community here, we appreciate anyone's insight, thoughts or advice....

- Tim

I can tell you that when I had the test my doc told me she was sorry she spent the money as positive or negative all it is an indicator. In my case the test came back negative and then I was dx by a pill cam.

I hope your son is the opposite, that is, test comes back positive and further testing shows he does not have Crohn's.

I know it is hard for you but try to have patience and perserveance, it seems issues of the gut takes both

Best wishes to you and your son

Dave

tchambers, welcome! In addition to this forum, you might want to check out the DragonPack forum, which is more closely targeted to parents of children with IBD: http://www.dragonpack.com/ibdsupport/parents/

The Prometheus test, unlike many routine blood tests, is not easy to interpret, so the pediatric GI is best positioned to shed light on it. I have no idea how useful it is - typically, as in my daughter's case, more definitive diagnoses of Crohn's seem to require colonoscopies/endoscopies, biopsies, and/or pill cams.

I understand that feeling of shock...hang in there. The CCFA website has helpful info www.ccfa.org

Post Edited (njmom) : 2/15/2011 3:28:37 PM (GMT-7)

 

   I was told that that test is not accurate and my daughters GI does not use it because of that. My daughter is 10. The one thing that is accurate in a diagnose of Crohn's is whether or not when the biopsies are taken , if they have granumola cells in them. Granumola cells are consistent with Crohn's not UC. I would check with the Gi and see what they say. Good luck and email me anytime. Have you tried any probiotics?  Some other things to research are Fecal transplant ( I know it sounds crazy , but they are doing it to balance out the bacteria in the colon with people that have C dif) and also Low Dose Naltrexone is a new treatment for Crohn's I have actually contacted the doctor that did the clinical study on this med .  Her secretary was very  Helpful. We may be taking a trip to Hershey Pennsilvania to talk with them.

Here's some info.

http://www.lowdosenaltrexone.org/

http://en.wikipedia.org/wiki/Granuloma

 

Thanks again to all the new posts... everyone's encouragement and kind thoughts do mean a lot.... it looks like we now just have a long wait for the GI and then likely another wait for the scopes.... so hard not to know (and so easy for fear to take over)....

Thanks again to all...

sorry,i guess they did know about it, i just don't know if they would test you back then as they would now? does that make sence?