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Crohn's Disease Blood Test

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Crohn's Disease
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Posted 6/7/2008 1:01 PM (GMT 0)
Has anyone here had the blood test done that is suppose to tell you for sure if you have Crohn's Disease??

I had it done and forgot to mention in my previous post about it.   Mine came back negative.  But my

2nd opinion told me not to panic over this.  He said just because I got a negative doesn't mean I don't

have the disease.   Well then why do this test if it can give false readings???????????   

This blood test also cost $975 to do. Thank God for Medical Insuarnce to still tell me nothing. (Ugh)

I'll tell you one thing, this disease is very confusing!!! I don't think I will ever understand it!!!

Posted 6/7/2008 4:05 PM (GMT 0)
Yes, the price of that test is horrendous and to get told that it isn't reliable infuriated me. I had a slightly elevated p-ANCA. The report said "95% probability of IBD" No doctor I have shown it to has taken the result seriously. I have heard doctors say "no lab test is perfect" and I have also had them tell me "But the lab test doesn't back that up"
Posted 6/7/2008 4:09 PM (GMT 0)
I also had blood tests done that came back negative, but my GI doc says I still have CD.
Posted 6/7/2008 4:20 PM (GMT 0)
I also had the blood test and it came back neg. and my GI said that it being neg doesn't mean you don't have Crohn's Disease. ????????
Posted 6/7/2008 5:09 PM (GMT 0)
If you are referring to the IBD7 . . . my understanding was that it showed if you had a genetic link to Chron's. My GI said that she wanted me to have the test so she could make a better decision about how aggressively to treat my bowel issues. She's pretty sure I have Crohn's . . . but there are no granulomas to prove it and she didn't want to be too aggressive with meds at this point if it wasn't warranted. The message from her office was that the test was negative. But when I got a copy of the blood work (actually from my rheumy), it did show positive for one out of the 7 items. I agree this test is WAY to expensive. Blessings!
Posted 6/7/2008 6:45 PM (GMT 0)
I am not sure if we are talking about the same blood test. I had one sent from Canada to the US (California). It came back negative but when they did my resection the biopsy came back positive. I was diagnosed at 14 years of age and now am 48. The test was done about 2 years ago when my last flare started up and we were curious to see if it was my CD or AS that was acting up; because, the blood test they do them are the same to see if there was any inflamtion. So my thoughts are that no blood test is conclusive.

Shoshanna
Posted 6/8/2008 7:55 AM (GMT 0)
I had this test as well and it cost $445. I am still waiting, and hoping, that my insurance will cover part, if not all of it. It is ridiculously expensive, I think!

My second GI said that a negative on this test does not rule out Crohn's.
Posted 6/8/2008 1:32 PM (GMT 0)
I wish I had a dollar for every time I had tests, and the only way is a biopsy to tell for sure whether you have it or not. You can be in remission but still have it. I have had crohns diagnosed 15 years. I had 5 doctors scratching their heads, prior to my diagnoses, because my blood test where not the norm. I was sent to a teaching doctor DT Toronto to get the final results, yes it was crohns. On Humira and doing great. Fingers crossed.
Posted 6/8/2008 7:59 PM (GMT 0)
The problem with trying to diagnose something like Crohn's with a blood test is there is still no agreement in the medical community as to the cause. Barring tissue biopsy of inflamed tissue, where granulomas are found (among other things) there's only supporting evidence. If I understand the genetic factors correctly (I may not) there are plenty of confirmed cases of Crohn's which test NEGATIVE for the specific genetic markers. To boot the genetic markers indicate a PREDISPOSITION, not presence of active disease.

So any doctor or insurance company who says "this one simple blood test will tell all" is lying. They both know better than that.
Posted 6/8/2008 8:44 PM (GMT 0)

Hi,

I agree with some of the comments that no blood test is 100% accurate.  However, some blood tests for Crohn's or colitis are much more sensitive than others, and are therefore more accurate.  Different labs use different processes for IBD blood work.  For example, all around the same timeframe, I had a colonoscopy (with biopsies) which showed I have Crohn's; I had a blood test at one lab which said I didn't have Crohn's; and then I had another blood test (IBD Serology 7 at Prometheus Labs; a more sensitive and accurate test) which confirmed I have Crohn's.

Hope this helps!

Posted 6/8/2008 9:21 PM (GMT 0)
I had the blood test last December when I also had a CTE and colonoscopy. All three came back suggesting Crohn's, so the doc was confident with making that diagnosis.

However... My symptoms have been unusual, and I'd say quite mild. Yet on IBD7 three antibody titers were elevated and one was very high (>100), specifically  the one for complicated, fast-progressing disease. So the doc freaked out and wanted to treat me aggressively. At the time it did not make sense so I said no thanks. He didn't hide his displeaseure and basically told me  I was killing myself. But I understand the the test results make severe disease STATISTICALLY more likely but it's not absolute truth. Anyways the inflammation in my ileum has been there since Jun '07 at least and I have not gotten worse despite having zero medical treatment.

Personally I think that test is dangerous in the hands of unknowledgeable docs. They take it to be "the truth" and will over- or under-medicate. Currently there is NO prospective clinical study that says treating a patient based on IBD7 test results will make them better off one, two, ten years down the line. So IBD7 should be one aspect and should not trump symptoms/scans/etc. in terms of determining treatment.

 

Posted 6/8/2008 9:59 PM (GMT 0)

Responding to Illini's comment---

IBD Blood results are not dangerous, and are simply guidelines to be used in conjunction with colonoscopies; small bowel follow-through tests (barium swallow) etc.  The results of all the tests, including the blood work, assist the doctor in making his or her best judgement in how to treat the disease.

By the way, how a person feels, and how minor or severe a person's physical symptoms are, are a very individual thing and do NOT necessarily determine how severe the disease is.  I am extremely fortunate in that I have very few physical symptoms, yet multiple colonoscopies show that my condition is moderately severe. 

There are no guarantees in life; so of course no doctor (or blood test) can say for sure whether or not a particular treatment is going to work, or what will definitely happen if treatment is turned down.  Once again, though, a good gastroenterologist has accumulated enough experience to give opinions about likely senarios.

Your body is your own, so ultimately you get to make the final decision on what you feel is appropriate for you.

Good luck!

Posted 6/9/2008 12:47 PM (GMT 0)
I have had the promethus blood test. Saying ibd at an intermedidate level.  I have had postive antibody test 3 times with levels rising each time for the ASCA antibody. Promethus lab is in CA im from IL. I was a hard case so we used this in as one more piece of the puzzle for diagnosisng.
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