Lab blood test

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whoknowswhat
New Member


Date Joined Aug 2008
Total Posts : 5
   Posted 8/13/2008 7:43 PM (GMT -7)   
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
 
 

Momikins
Regular Member


Date Joined Oct 2007
Total Posts : 77
   Posted 8/13/2008 9:14 PM (GMT -7)   

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.


LavenderBlue
Regular Member


Date Joined Oct 2005
Total Posts : 168
   Posted 8/13/2008 9:49 PM (GMT -7)   
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
lavender
 
diagnosed: Crohn's Aug 2005
 
other set-backs: Vasculitis Aug 2006, Sub-total Colectomy (10 inches of colon left) Feb 2007, Ogilivie's Syndrome Mar 2007, Pulmonary Embolism Sept 2007, Collapsed lung Oct 2007, Recto/Vaginal fistula Nov 2007
 
drugs: Imuran, Remicade, Prednisone, Fentanyl, Warfarin, Flagyl, Cipro, Celexa, Ferrous Gluconate, Acidopholous


ZenaWP
Veteran Member


Date Joined Aug 2007
Total Posts : 884
   Posted 8/14/2008 9:53 AM (GMT -7)   
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. 
Crohn's Disease, Acid Reflux/Gastritis, Hashimoto's Thyroiditis, Endometriosis, Arthritis, Depression/Anxiety.  Too many meds to list them all.  =) 


Sarita
Veteran Member


Date Joined Mar 2005
Total Posts : 2486
   Posted 8/14/2008 10:38 AM (GMT -7)   

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.


Co-moderator - IBS Forum

Please always remember to consult your medical professional regarding your medical questions; this forum is intended to provide patient-to-patient support. Although some of us have healthcare backgrounds, we cannot diagnose or treat patients on the board.


whoknowswhat
New Member


Date Joined Aug 2008
Total Posts : 5
   Posted 9/5/2008 4:01 PM (GMT -7)   

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


whoknowswhat
New Member


Date Joined Aug 2008
Total Posts : 5
   Posted 9/5/2008 4:04 PM (GMT -7)   
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,

CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 9/5/2008 6:25 PM (GMT -7)   
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.
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.


whoknowswhat
New Member


Date Joined Aug 2008
Total Posts : 5
   Posted 9/5/2008 7:26 PM (GMT -7)   
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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