Anyone with Celiac?

rachelravenMember

So, I've been battling fatigue, bloating, mild fevers here and there, a perianal fistula, and some pouch changes over the past 2 years.

My new GI is working me up for all sorts of stuff.

So, the Celiac serum markers: two came back negative, one positive.

He now is going to add an upper endoscopy when he does my pouchoscopy on June 11 to get some duodenal biopsies to either rule in or out Celiac disease.

Question: Has anyone been diagnosed with Celiac years after having their pouch? What were your symptoms? How were you diagnosed, and did you have all positive serum markers or some or none, and biopsies showed it?

I'm not sure that I think this is going to be a real diagnosis for me, but I guess I can't ignore this, and we'll just have to wait to find out when they get the biopsies. I'm not changing my eating patterns, because I know that if I was to edit out gluten now, it would skew the test.

Thanks for any information you may have on your past experiences.

3/28/143:23 PM

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kkMember

of course somehow lost all I typed so starting over. doc tested me/I never had heard of it/discussed also after scoping me/told tested negative for celiac. said cuffitis/ordered pelvic floor issues. problem is mostly when stool certain consistency/problem emptying at end. pelvic floor got pelvic back in line but didn't help bowel issue. ordered canasa. just read takng cipro can cause cuffitis/what??? changed over from flagly to cipro b/c of side affects from flagly. still in same condition after 3yrs. no answers/also see flesh at times duing certain consistency. let me know what you find out.... praying for you. at least we have this site where people REALLY understand....

3/28/144:53 PM

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Jan DollarModerator, RN, retired

No, Cipro does NOT cause cuffitis. I believe you misread or misinterpreted the other post. What was said was that Cipro can lead to a C. difficile infection, which is an infection in the gut. It is a common bacteria that becomes pathogenic when you take certain antibiotics that kill bacteria that keep it in check. This is completely different than cuffitis, which is like UC in the retained rectal cuff.

Jan

3/28/146:12 PM

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rachelravenMember

Hm. How'd we go from my question on Celiac to cuffitis? lol

3/28/147:58 PM

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kkMember

b/c in same dr. visit (GI)for the same issue. celiac/cuffitis along w/other things were discussed. doctor brought up these things/he would have to be asked WHY!!!! That's how! when saw celiac post know doc/ordered test according to what I was experiencing. asking person that started post in to see if issues were same. I was just told negative for celiac/ not one positive/2 negative/whatever.

3/28/148:32 PM

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kkMember

GI said inflammation called cuff b/c of location. like in other area pouchitis/in colon ulcerative colitis. would have to ask him why he tested for celiac/why he called inflammation what he did.

3/28/148:53 PM

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Jan DollarModerator, RN, retired

Gluten intolerance and celiac disease have been found to be much more common than they thought. Plus, they used to think you had full blown celiac or nothing, but it seems that there are degrees of gluten intolerance, just like with lactose. They've also found that intestinal surgery can be a triggering event. You could have had a mild case before, and it worsened over the years. If you have celiac, it could even be the cause of B12 malabsorption. I don't think that the blood tests are definitive, and you need small bowel biopsy for a firm diagnosis. If you have been restricting wheat and others gluten sources, your blood tests are less useful.

Rachel, your GI sounds very thorough! It will be nice to get to the bottom of your issues, I'd think.

Jan

3/29/141:55 AM

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