Collagenous Colitis

[raemckee]

I was just diagnosed with Collagenous colitis but not celiac. I had an endoscopy and colonoscopy a week ago with 6 biopsies along duodendum and colon. I'll be treated with a steroid for the inflammation and advised to follow low fiber, low fat, dairy free, gluten free, no caffeine, no alcohol, cooked fruits and vegetables diet. Do you know of a on-line support group for this? Any recommended reference books? Coping mechanisms?

[jcronan]

I was just diagnosed with Collagenous colitis but not celiac. I had an endoscopy and colonoscopy a week ago with 6 biopsies along duodendum and colon. I'll be treated with a steroid for the inflammation and advised to follow low fiber, low fat, dairy free, gluten free, no caffeine, no alcohol, cooked fruits and vegetables diet. Do you know of a on-line support group for this? Any recommended reference books? Coping mechanisms?

When I was first tested my doctor said she could definitely see signs of ( and possibly Chrons) but wasn't sure about Celiacs. she followed with a genetic blood test which confirmed it was Celiacs. I would recommend you ask for that if they haven't done it yet. When I asked her what she recommended for treating the first two, she said there was some drugs, but for most patients the change in diet (primarily what you described) is often the best treatment. It can take a little longer than if you are just dealing with one thing, but hopefully you will get results. I've been Gluten Free for 2 1/2 months now & have started to see improvement in all areas.

[raemckee]

The steroid prescribed is Budesonide EC 3 mg. The warnings said let your Dr. know if you have glaucoma. I have recently been diagnosed with that as well. Has anyone else had experience with the same scenario? I have contacted both the gastroenterologist and the opthamologist and am waiting for them to respond back. If you have collagenous colitis and have taken steroid treatment, please let me know about your experience as well.

[GFinDC]

You might get some info on the Crohn's forum. They have a pretty active forum there.

For gluten free eating info though the best place is right here on celiac com.

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[peeptoad]

My dad has collagenous colitis. He was on Entocort for awhile, but now mainly just a modified diet and that seems to keep him in remission. The main things he avoids are beans/legumes, large amounts of raw vegetables (particularly leafy greens, bell peppers, etc) and a few other things.

You might try the FODMAP diet, or some modified version of ti to see if it works for you.

The other thing that his GI doctor told him was that Pepto Bismol is great for CC. There is something in it that has a positive effect on the microflora or something. My dad has found it to be a big help.