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What Should I Believe?

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Crohn's Disease
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Posted 1/20/2010 8:34 PM (GMT 0)
I have been having on and off stomach problems for the last year. The worst was between August and October of last year when I had severe stomach problems and lost about 20 pounds in a month. The pain continues to this day, usually mild or moderate depending on the day. I also am dealing with nausea on an almost daily basis.

Anyway, I've had a bunch of tests taken.. Two colonoscopies, upper gi, capsule endoscopy -- the works. EVERYTHINokG came back negative. Then I took some prometheus blood tests.

They found a pattern consistent with Crohn's AND high gluten sensitivity. (I'm now on a gluten free diet)

My doctor wants me to try Endocort, but I'm nervous taking a new drug since I don't really know if I have Crohn's. What should I believe-- The prometheus tests or the other ones?

Oy.
Posted 1/20/2010 8:37 PM (GMT 0)
I would ask for a pill camera test, or at the very least a small bowel follow through x-ray.
Posted 1/20/2010 8:42 PM (GMT 0)
Sorry, to clarify, I did have those two tests and they didn't find any inflammation.
Posted 1/20/2010 8:43 PM (GMT 0)
How long have you been on the Gluten Free Diet? Is that helping?
Posted 1/20/2010 8:48 PM (GMT 0)
I've been on it since October (although I've accid ently had gluten a few times). I believe it's somewhat helping, in that the pain is not as bad as before, and I don't have daily diarrhea. But the pain remains. And that's my concern/worry
Posted 1/20/2010 9:44 PM (GMT 0)
celiac and crohns are related. if you had trouble with your stomach first this leans to celiac. Most crohns is by blood in stool or sudden bowel change, generally speaking. So believe that the relationship to celiac is enough to do your best on the gluten free to avoid provoking bowel problems. Budesonide has less of manifesting side effects than prednisone and it seems it is the more appropriate drug in your case anyways. Perhaps even for the pain so ask the doctor if the endocort will eliminate your pain without provoking bowel problems. Then again you say you had daily diarrhea so I dont know if the stomach issues were first or not.
Posted 1/20/2010 9:58 PM (GMT 0)
I'll bet that if you polled a lot of GI docs with those test results and asked "does this patient have Crohn's? Yes or No." You wouldn't get far from a 50/50 response. I think if it was me I would just decide for now that I don't have Crohn's. Wow, I wish I could say that. Even for a little while. That would be great. OK, now I'm jealous.
Posted 1/20/2010 10:37 PM (GMT 0)
Entocort is pretty harmless but does wonders in the small bowel. If they can't find disease there... whats the point on entocort. Honestly there isnt. your taking steroids for nothing.

If i were you Id have a Small bowel Follow through and see if there is anything they can find. According to what you are saying an upper GI and pill cam..
Posted 1/20/2010 10:41 PM (GMT 0)
I had a small bowel follow through about a year ago...and nothing was found there. I believe Ive actually had every type of test imaginable over the past year. All negative EXCEPT Prometheus test.

It's frustrating not being able to just get a straightforward answer from doctors. I just want to know what's causing the pain and how I can treat it. If only it were that simple.
Posted 1/21/2010 12:48 AM (GMT 0)
Celiacs and crohn's are 2 entirely different diseases from one another but can have similar symptoms.

Did you have an endoscopy done? An endoscopy can help DX either Celiacs or crohn's. The Prometheus tests isn't 100% accurate, especially compared to scopes.

Generally, if they don't find inflammation or signs of celiacs they tned to give a DX of IBS...If it were me, I'd aye go see another GI and make sure to get an endoscopy to look for either CD or Celiacs.

:)
Posted 1/21/2010 2:46 AM (GMT 0)
Again, I'm sorry for not providing a full list at the beginning -- but, yes, I've also had an endoscopy along with my colonoscopies in late 2008 and September 2009. The first time they found tiny ulcers, the second time, nothing. Biopsies were negative. I've been on a gluten-free diet since the second colonoscopy/endoscopy.

I had a few of those prometheus tests done - one said it was unlikely I had IBS, one said I had a "pattern consistent with IBD-Crohn's, and the third said I have high gluten sensitivity (something like 14x more than general public).
Posted 1/21/2010 4:47 AM (GMT 0)
From what I understand of what you have said is that your bloodwork is showing some interesting positives. I assume that since the positive parts of your bloodwork are generally associated with inflamation, and that makes sense to me that your doc is thinking about endocourt, because endocourt is one of the treatments for inflamation.
Posted 1/21/2010 4:35 PM (GMT 0)
There is one possiblity ... and that is you have Crohn's but it hasn't manifested yet.  You might have the disease within you but it just hasn't shown it's ugly face yet.  You may be catching it in the very early stage...which is good.  I would suggest taking some of the meds and see if it helps.  Don't wait until the inflammation starts eroding your intestines. 

Feel better and good luck.

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