Prometheus Serology Predictive Value

Has anyone had any experience with only having this test come back positive (IBD Serology 7)?  As in, no other test showed anything at the time, only to discover you had Crohns a few years down the road?  I know it's a relatively newer test, but I was just curious.

Thanks! 

MayOk, I had a surgery consult today and the surgeon told me that he felt my positive ASCA was from my other auto-immune issues and not predictive of crohn's disease. So, it can be a strange test. The GI's don't like them from what I've heard.

I have been diagnosed with colitis but not UC or crohn's.

I have a positive ANA and skin scleroderma. Good luck on your quest to find out what's wrong.

All of my tests had come back negative and, after 8 years, my GI told me to move on because he couldn't figure out what was wrong.  Next GI did this test, which said UC, and then the capsule endoscopy, which showed Crohn's.  So, this was the first test to indicate that I had IBD. 

MayOk, he did definitely ask me several times if I thought it was all in my head, since he couldn't find anything.  IBS was mentioned as well.  He did every test he knew to do, twice.  Finally, he told me it may be better to have another set of eyes look at things.  I thought I was just getting a second opinion and went to another GI.  For my first few visits with the new GI, I would call the old one to consult and they finally told me to stop consulting with him and to just go with my new GI.  That new GI turned out to be a horrible doctor, but he did at least find something before I switched again.  I don't remember getting another referral...I don't think I had to either for insurance purposes (since I had already been referred to a GI) or for the doctor's office purposes.  It will depend on your insurance and the individual doctor. 

If you think something is wrong and they are not willing to do more tests, etc., then try another doctor.  Most of us go through a few before finding the right one. 

jeanneac, yes, they are definitely related.  When they first sent me to a rheumy about 8 years ago, they couldn't figure out if the inflammation showing up was RA, was from my thyroid disease or from something else.  All of those are auto-immune and auto-immune diseases run in my family...guess I couldn't help but get all kinds of stuff. 

I'm amazed that a Mayo surgeon would tell you that he doesn't think you have IBD but that he'll do surgery if you want, especially without consulting with your GI.  Aren't they supposed to be the top docs, but they are willing to do surgery they think is unnecessary and won't help? 

Wow, I thought Mayo was top notch for stuff like this. Must be like any place else, depends on what doc you get.

So scopes often do not show what CT scans show? I heard someone on another forum said she got dxed through an MRI and her scopes were clean too! What the heck? I thought c-scopes were "gold standard" or whatever.

I had an abdominal CT scan to check out what an ultrasound had determined was a hemangioma on my liver. It said something like "no specific intestinal abnormalities." I've heard people talk about CT enterography but I didn't know if all abdominal CT scans are created equal when it comes to looking for IBD. I had to drink that nasty Barium. It tore me up, though for the rest of that day. Maybe I should request an MRI. It's not radiation, right? I just feel weird "telling" my doc what to do. I don't see my GI again until October to let him know how the Xifaxan helped. I'm not sure it is. I keep having issues off and on.

My issues are frequent D with sporadic horrific bouts of cramping. One of said bouts made me pass out, and I finally went to the doc b/c I was among friends when it happened so they would have killed me if I didn't. But it's been going on for years. Really got going when I was pregnant with #2. And sometimes I vomit at the same time (fun!) but that hasn't happened recently that I can remember.

I also have what I think is terribly painful ovulation. I'd been having these terrible stomach aches that I finally figured out were almost exactly in the middle of my cycle, so I'm kindof assuming that is what it is. But the pain, while all over my lower abdomen, is most severe in the LRQ. It doesn't switch sides like I'd assume ovulation would do. Endometriosis? I dunno. But I had 2 c-sections so maybe there are adhesions or something. My periods are no sweat tho, and I hear they're awful with endo. ???

Jeannac: ARe you saying it was your ASCA assay that was out? Or are you talking about a different blood test?

I think the pill cam is supposed to be the best test for finding problems in the small intestines. Colonoscopy is supposed to be the gold standard for finding problems in the large intestines. Have they given you anything for the cramps and IBS? Xifaxan is an antibiotic.

Until you mentioned it, I'd never heard of anyone having an MRI for the large or small intestines. I think since they move a lot, that's why they don't use MRI's but I could be wrong there. It's like pulling teeth to get a doctor to order an MRI for anything.

Yes, my ASCA was positive, MayOK. Last week, the surgeon that I had a consult with thinks it is a false positive b/c I have other auto immune issues. Just a "speculation" though, he doesn't know that for sure.

Oh, and Jeanneac I forgot - my GP gave me hyomax as an anti-spasmodic and i just take immodium if i am having d and have to go somewhere or am already out and it starts. sometimes the hyomax works and sometimes not. never combats the diarrhea. he told me that the xifaxan was in case my symptoms were a result of small intestinal bacterial overgrowth. i finished it about 3 weeks ago and see him in October to discuss if it helped. it's weird, b/c my problems are so sporadic an unpredictable it will be hard to say if it helped at all unless i have NO problems from here on out whatsoever i guess.

I had the small intestine MRI enterography done at Mayo in Scottsdale. The doctor said its a very useful test if there are issues with your small intestine (but my Crohn's was never shown to be outside of my large intestine). It is not a fun test. It is time consuming, requires drinking a lot of very watered down flavored barium (not nearly as bad as straight barium), and your will be confined up to about your shoulder blades. I was allergic to the dye and threw up all the liquid right on the table, but refused to stop because I would have had to start all over. The nurse said it is the worst MRI, next to the heart. It is rather expensive...if I remember correctly it cost about $16,000. But relative to the cost of having the disease I guess its just another drop in the bucket. But the results were helpful.

For a CT enterography, you drink a different liquid than for a regular CT scan, perhaps more. It does have a tendency to give you diarrhea too, so be ready for that. My Gi's said it is more accurate than a regular CT scan.

It's all about the money, not patient safety, convenience etc.....
I am allergic to the dye for a CT scan and also they expose us to a lot or radiation. You'd think with those factors, they would let you have an MRI. They say you are only supposed to have one ct scan every four years or it greatly ups your risk of cancers.

MayOk, I would mention it to your OBGYN.  Most good GYNs will be able to tell you if your pain sounds like endometriosis. Mine who did surgery "just to see what's going on" is not one I would consider to be good.  He needed to retire.  My current GYN was able to tell me that my pain sounded like endometriosis and that, combined with the fact that I had it previously, convinced her it was worth doing another surgery.  Even if you do have surgery, it's laparoscopic and I only have 3 tiny incision scars.  Only bad part was they had to cut through muscle on two of them, so I was sore for a while.

BTW, my GI now wants to do more tests to make sure I really have Crohns.  This after 5 years of calling it Crohns and treating me with biologics!  So, I'm waiting for them to schedule the enterography, colonscopy and upper GI.  So, maybe my capsule endoscopy and promethius test were both wrong...doesn't seem very likely to me. 

I have all the same questions you have...if the biologics are the only thing that has helped, why are we questioning the dx now?  Basically, my arthritis is very bad and nothing is helping so the GI said we need to find out if it is really Crohn's but if it's just IBS, we can stop the Crohn's treatments and focus on Enbrel and other arthritis meds.  So, why do I have such bad arthritis at a young age if it's not Crohn's related?  If my Crohn's is in remission, the tests aren't going to show anything anyway, will they?  So, he will assume I don't have Crohn's now and take me off the meds and then when it flares, we get to start over with tests again and rediagnose me? I asked if we could do another pill cam, since that's what they dxed me with and he said insurance is not approving these unless MRIs show inflammation but that MRIs don't always show it, so they aren't reliable.  I'm so confused right now!   

I had the serology test done and it came back negative.  My Dr. said he couldn't believe it came back negative because he knew that I had Crohn's.  He said that he has had that same problem with other patients and he was going to stop using that test because it is normally wrong.