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Crazy insurance, crazy diagnosis

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Crohn's Disease
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Posted 3/13/2008 6:05 PM (GMT 0)
Hi everyone!

It's been awhile since I've posted, so I wanted to catch up with everyone.  I went to a new gastro who did the Prometheus tests.  After 34 years of progressing through dx's of nothing, to IBS, to UC, then on to Crohns, with chronic gastritis too, my new gastro said the Prometheus tests 'prove' it to be celiac disease, not Crohns....!!!

Now for the funny part.... 

He wants to do the camera pill-thing to be sure, but my insurance won't pay for the camera pill UNTIL he does a colonoscopy and an endoscopy.  Now I've had both procedures done (probably a dozen colonoscopies in my life and 1 endoscopy), but my insurance insists I must have these two procedures first before I can do the camera-pill, even though my new gastro will do the camera-pill no matter what the first two tests show.  And we wonder why health care costs are out of control in America!   My insurance company would rather pay for three expensive tests, than just one!

Oh well....I hope everyone is doing well out there.   If it really is celiacs disease, I'll miss this forum!!!   I don't see a forum for celiacs.  Take care everybody!

Posted 3/13/2008 6:29 PM (GMT 0)
yes, medicine is nuts!
you may have seen my posts; I tested negative for celiac, but have stopped gluten per a naturopath's test and it has changed my life. all symptoms are gone and I feel amazing. I had tested positive for crohns two years ago and all test since have showed no crohns. however, I do still hang around here as a past-crohnie and they let me.
if you need one, email me and I will give you a good celiac forum.
take care, yp
Posted 3/13/2008 6:51 PM (GMT 0)

Actually I'd agree with the insurance on this one -- at least partly so.

I'm not sure why your gastro wants to do the capsule endoscopy first.  The gold standard for diagnosing Celiac Disease is to do an upper endoscopy (gastroscopy), and to take about 8 biopsies of the duodenum (beginning of the small intestine).  These biopsies will show whether or not you have celiac disease.  Note:  You should continue eating gluten-containing products until the biopsy so your celiac shows up if that's what you really have.

Now, it's also possible, though rare, to have *both* celiac and Crohn's disease.  So after the endoscopies, the capsule endoscopy could be considered to look for signs of Crohn's.  The capsule endoscopy can be used to look for signs of celiac, but it's better to have biopsies -- something the capsule endoscopy can't do -- and that's why an upper endoscopy is preferred for celiac diagnosis.

Posted 3/13/2008 8:11 PM (GMT 0)

Thanks for the replies.

Beave -

My new gastro seems to think that celiac disease will only show up in those places where an endoscopy and colonoscopy haven't reached, so your comments are interesting. 

Past scopes from other gastros have shown severe gastritis in the stomach, active colitis in the lower sigmoid colon (which led to the UC dx), and illietis at the terminal illeum (which led to the Crohns dx).    I've had plenty of fissures, but no fistulas, no blockages and no re-sections.    Who knows what it is.....!

Do you have celiac disease?

Posted 3/13/2008 9:24 PM (GMT 0)

No, I don't have celiac.  I have Crohn's disease.  My brother has UC.  And my mom may/may not have celiac (still trying to figure that one out - she's getting conflicting test results).

I base what I said on the fact that just last week I watched a presentation on celiac disease given by a celiac specialist at the UCSD hospital (univ. of california san diego), and he made it very clear that the best test method is the upper endoscopy with *multiple* biopsies (at least 6 or 8 biopsies).

See the following for more info, which is very consistent with what the UCSD specialist said:

http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/

http://en.wikipedia.org/wiki/Coeliac_disease

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