Can't get doctors to give me crohn's diagnosis!

Hi, I am a newbie here, this looks like a fantastic site for information. I am so frustrated and confused right now and wanted to share my story with you all and see what you guys think. about 6 years ago I started getting very sick with horrendous abdominal pain, had diarrhea practically all my life, but got much worse at this point, lots of vomiting, lost like 30 pounds in 4 weeks.... At that time my blood results showed a sed rate in the 60's, and red blood count around 10.0, my scopes (upper and lower) looked clean except for one apthous ulcer and the biopsies showed eosinophils, and some flattening of the intestinal villi... but not the gold standard obvious IBD biopsy they wanted, in fact at that time I was diagnosed with celiac sprue and put on that diet for about 3 months while I got progressively worse. At that time, I went to another doctor who was certain they just missed the IBD diagnosis the first time and wanted another scope, his scope also came out clean except for some intestinal redness and granularity. Then he did a camera study, the capsule showed several apthous ulcers in my jejunum, along with mild inflammation and redness, but biopsies again didn't say IBD. Now, to me, these findings can mean nothing else BUT IBD, yet the doctors want to keep looking to make sure they haven't missed anything because now my sed rate is in the 80's and they refuse to give me the crohn's diagnosis so that I can start treatment! Does this sound illogical to anyone else? The only way I can get through the pain is when they put me on prednisone for a few weeks, then I feel great, after I'm weaned awhile it starts back again.

Sorry this post is so long, but I don't know what else to do... now they want me to have a double balloon endoscopy because the problem is in the part of the small intestine that the scopes don't reach, I just want the diagnosis and treatment, and want to stop being treated like a guinea pig. Please give me any opinions. Thank you so much for listening

Marla

Have you had blood tests for celiac (testing for tissue tranglutaminase)? 

You could ask for the docs to do the Prometheus Labs IBD Serology 7 test for you.  Note some insurance won't cover this test, and it costs about $400, so check with your insurance ahead of time.

Your situation is indeed tricky.  With scattered aphthous ulcers in places that can't be reached easily, it's difficult to get a biopsy and say it's definitely Crohn's.  The Prometheus Labs test result by itself isn't always reliable, but taken together with your symptoms and other test results, it might help figure out what's going on.

Another thing to consider is NSAID induced inflammation.  Have you taken any NSAIDS at all recently?  For some people even just one can lead to scattered ulcerations and possibly eosinophilic infiltration. 

Eosinophilic infiltration could also indicate a food/drug allergy, or possibly a parasitic infection.  Have you tried an elimination diet (beyond celiac diet)?  Possibly try an elemental diet?  Also have you been tested *repeatedly* for parasites?  (I say repeatedly because parasites can be missed with just one or two stool samples.)

Post Edited (beave) : 9/19/2007 2:59:02 PM (GMT-6)