So Confused: Wrong Diagnosis??

[chunnicutt]

Hey Everyone,

Its been a while since I've been on here, but a lot has happened in that time. I was diagnosed with Chron's via colonoscopy in January, but then in February my GI said that the biopsies weren't conclusive enough for that diagnosis (he admitted he could have taken a bad sample)...and then did IBD serology blood tests as well as a few other blood tests that show genetic markers that he said "only people with Chron's disease have"...all blood tests came back negative.

I'm still having symptoms of Chron's (severe abdominal pain, some loose and frequent stools, and mouth sores), but my GI has not confirmed to me that I for sure have or don't have CD. Isn't that his job to figure that out!?!? I'm so frustrated right now that he can't tell me what is wrong with me.

I have been doing some reading about the different blood tests used to diagnose CD and their reliability...not finding that they are the most reliable in diagnosing...

Anyone out there have a similar experience with the IBD serology coming up negative but your doc says you have CD because of what he/she saw on your scope and CT???

HELP!!! Please!!
Thanks!!

 

[Ihurt]

Wow, I can understand your frustration. I have not been Dx with crohns. I saw my GI doc yesterday to explain all I have been going through. He wants me to try a couple different meds first( he thinks I have IBS). If they do not help then he said he would do a colonoscopy. I did ask him how crohns was diagnosed though. He told me that you can visibly see changes in the colon of a person who has crohns. He said if the colon looks 100% normal, then they do not even usually take biopsies.

I have alot of health issues and I know how frustrating it is to be given the run-around. I guess the question is, is there anything else that could have inflammed your intestines? How accurate are the sereology tests for the biopsies? I had to have a bunch of biopsies taken from my esophagus years ago for an issue I was having and the biopsies came back negative for what they were looking for. But the doctor did tell me( this was at mayo clinic), that it is possible they did not get a sufficient specimin, which I found ironic. I mean they took like 8 biopsies!!

I guess the only thing they could do is when you have the next colonoscopy they would have to take more biopsies, but I can imagine you dont want to go through that again. I am sorry you are dealing with this..

 

[David]

I can understand your frustration I'm so sorry you're having to go through all of this. Does your GI have you slated for other tests?

You are correct that the blood tests for Crohn's Disease aren't that reliable. Heck, even the biopsy results are difficult. Give this a read for example. Crohn's Disease can be HARD to diagnose. What makes a doctor good is their willingness to do what it takes to figure things out. If your doctor throws their hands up, get a second opinion. If they keep trying and are supportive of you, then that lends credence to the idea that they're a good doctor.