Gastroenterologist Said Something Confusing Yesterday..

[amberlink09]

Hey guys,

So, I was diagnosed Celiac 3 years ago by endoscopy but I've never received any relief from my symptoms (and yes, I am positive I haven't been eating gluten). I started the Paleo diet 9 months ago and everything was great for 4-5 months and then one day it just stopped working. When my Celiac problems first started about 10 years ago, it was always diarrhea, but after a few years it became constipation, now I've been back to the diarrhea stage for about 4 months.

Yesterday, I went to my gastroenterologist because I'm so fed up I don't know what to do anymore, and I was thinking it was time to have another endoscopy to see if I've healed at all, but he told me that people with Celiac often get autoimmune disorders in their large intestine so my problem is a large intestine problem, rather than small intestine like Celiac. I've never heard of this before so I was surprised. He gave me Lialda and said that if it doesn't work within two weeks they are giving me a colonoscopy.

Here's what I've tried before:

Xifaxan

Low dose anti-depressants for the pain

Low dose intestinal muscle relaxants

Fiber

FODMAPs elimination

Barium X-ray with no findings

Tested for food and airborne allergies- no results.

I also have extreme bloating which annoys me more than anything.

I'm just so tired, Celiac was supposed to be the answer to my problems but nothing has changed, so I feel like it makes more sense to look at my small intestine before assuming it's something else.

[kareng]

" gastroenterologist said something confusing". This is a class they take in Med School.

He should look at the small intestine while he's got you cleaned out and knocked out. Take at least 6-8 biopsies while he's there. I think he should look at the other end, too.

Check out #8. & copy for doc. You can find similar info on Univ of Chicago Celiac ct site, too

Open Original Shared Link

[cyberprof]

Amberlink, I hope you get some relief soon.

Microscopic colitis is a large-intestine disease that is possibly related to or caused by celiac, according to my GI. When I had my routine age 50+ colonoscopy, she specifically biopsied for it, even though I have minimal celiac symptoms now that I'm gluten free (only when glutened).

Ulcerative colitis and celiac can also happen together...not sure if there's a cause/effect thing there but certainly anyone could end up with both celiac and UC at once.

Crohns is another separate disese of the large intestine, and can also coexist with celiac.

So, yes, you should try the med the doc proscribed and then if it's not better, a colonoscopy would seem to be a likely step. All of the above can cause celiac-like symptoms.

Edited to add: Looks like Ulcerative colitis can also be linked to celiace (not a big surprise). Open Original Shared Link This entry gives some ideas on what your problem might be based on symptoms. And yes, he should do an endoscopy w/biopsies while you're undergoing the colonoscopy - very easy to do both, since both require the same drugs and colonoscopy prep covers everything needed for endoscopy prep for the patient.

[amberlink09]

Thanks guys! If I do the colonoscopy I will definitely push for the endoscopy too, I'd feel better having all my bases covered. Hopefully the medicine will work, and I won't have to deal with any of it! Also, thanks so much Cyberprof, I did some research on the microscopic colitis so now what my GI said makes sense. That must be what he was thinking since he told me we need to take biopsies of the colon and large intestine. We had done a barium X-ray to test for Chron's and Colitis but everything came back fine, so I was surprised he still thought it was something wrong with my large intestine.

[cahill]

Thanks guys! If I do the colonoscopy I will definitely push for the endoscopy too, I'd feel better having all my bases covered. Hopefully the medicine will work, and I won't have to deal with any of it! Also, thanks so much Cyberprof, I did some research on the microscopic colitis so now what my GI said makes sense. That must be what he was thinking since he told me we need to take biopsies of the colon and large intestine. We had done a barium X-ray to test for Chron's and Colitis but everything came back fine, so I was surprised he still thought it was something wrong with my large intestine.

My GI said as a celiac I was at risk microscopic colitis .

I have had the colonscopy and the biopsies done.

[GFinDC]

Hi Amberlink,

Some of us develop additional food intolerances after going gluten-free. Lactose, casein, nightshades, soy, etc etc can all cause GI and other symptoms. So that's something to check on. There aren't manyhtest for food intolerances though, an elimination diet is the way to go.

[dilettantesteph]

I was biopsied for microscopic colitis myself. I had problems getting relief too, until I kept a detailed food journal, ate unprocessed foods, and kept track of where each food came from as well as what it was. It was difficult, but the results are worth it.