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Crohn's Disease
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Posted 8/14/2008 2:43 AM (GMT 0)
Hi, I'm new here and have a question for anyone who might know.  I was told by a Rheumatologist that I have the antigen for Crohn's disease that has to be confirmed by a colonscopy.  I got a bill from a lab in California that did the blood test.  I looked it up and they are the only one's in the U.S. that do this particular test.  Has anyone heard of this and how accurate it is?  I am concerned because I don't have the typical symtoms listed for Crohn's although I do have symptoms of colitis on and off.  I also have joint pains, severe fatigue, sleeping all the time, and memory loss.  Does this sound familiar to anyone?

Thanks in advance

 

Posted 8/14/2008 4:14 AM (GMT 0)

Yes, they collected blood from me and sent it to California as well.  I was simply told that my blood work confirmed my CT scan and that I definately had Crohn's.  I was then sent for a small bowel follow through to see how much of the small intestine was affected.  This test also confirmed that I had Crohn's.  I don't have very much diahrea which has always left me wondering if I really have Crohn's, but I do struggle with fatigue, joint pains and memory loss.

I hope this helps.

Posted 8/14/2008 4:49 AM (GMT 0)
You sound like me when I was first diagnosed. I didn't have much diahrrea, but I had severe fatigue and joint pain. now, three years later, the disease and morphed some. Lots of diahrrea, same fatigue, but rarely have the joint pain. I don't know much about the lab. I've heard that it's not 100%, but that it's pretty accurate. i think you'll find that there are not many "typical" crohnies around here. everyone seems to have some weird symptom or occurance. in fact, that'd be an interesting post. I might post that question so you can see how variable things can get. good luck!

cheers
Posted 8/14/2008 4:53 PM (GMT 0)
You are refering to the Prometheus test.  Mine showed that I had UC and it said that it was 98% accurate, however, my doctor has since changed my diagnosis from inderminable colitis to Crohn's disease.  So, I don't know how accurate they really are, just that the result sheet they gave me said it was 98% accurate.  I have very few gut symptoms of Crohn's (and have rarely had diahrrea, actually had the opposite problem for many years) but the arthritis is killing me.  My GI said he has seen people who test positive for Crohn's but never have any gut problems, just arthritis, etc. 
Posted 8/14/2008 5:38 PM (GMT 0)

I believe the Prometheus test is quite accurate when it is positive...not as accurate when it is negative.  This means it is a highly sensitive test but not highly specific.  If you tested positive, it's a good indication that you do have Crohn's.  But if you test negative, there is still the possibility that you have Crohn's.

I'm a medical student and did a lot of research on this test when I had to have it done myself.  The statistics are a little confusing, but it's a good test.

Posted 9/5/2008 11:01 PM (GMT 0)

Hi, Well, this doesn't sound really encouraging as I was hoping there were no definite's about this test.   Sarita, can you tell me what your studies told you in the way of accurcy and exactly what they are looking at?  I also would be interested to know even if it's positive and turns out not to be Crohn's disease, what else could it be?

Thanks

Posted 9/5/2008 11:04 PM (GMT 0)
Hi Again, Thank you all for your insight into this. My primary doctor told me today that Crohn's is a very serious illness but he thought the colonoscopy would be the only thing to verify as to whether I have it or not.

Take Care,
Posted 9/6/2008 1:25 AM (GMT 0)
Welllllll, yeah the colonoscopy is the most definitive test - IF - Crohn's is located low enough in the small intestine to be reached by the scope or if the Crohn's is also in your colon. The most common location for Crohn's to strike is in the terminal ileum near the ileocecal valve. In my case, I'm one of the minority. My Crohn's has been confined to the small intestine but too high up for the scope to reach for many, many years. The small bowel follow thru, and later the CT enterography have given the most accurate results in my case. So, if a colonoscopy doesn't definitely Dx Crohn's or colitis, don't just assume you don't have IBD.
Posted 9/6/2008 2:26 AM (GMT 0)
Hi, thanks for the info. I get mouth sores and am always thirtsy so would that be indicative of it being higher?

Thanks
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