1. < Digestive Health

Collagenous Gastritis: What treatment(s) work for you?

Posted by jmn @jmn, Jan 5, 2020

I have been diagnosed in July ‘19 with Collagenous Gastritis. My second endoscopy in November reconfirmed the diagnosis. Initially, steroids specific for the gut and Protonix was prescribed. Now I am on Protonix. Due to the rarity of this disease, there is not a standardized protocol for treatment. My GI doctor suggested I receive a second opinion for treatment. Good luck finding a facility who specializes in CG. I was wondering, is there another patient out there with treatment modalities that have worked for them besides Protonix and a gluten free diet? Thanks.

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Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Feb 14, 2022

@fdixon63 - if you still have diarrhea now on Budesonide, you can still take Imodium.
Make sure to take an electrolyte solution to help replace what you lose with diarrhea, such as potassium.
When I was at my worst I got dehydrated- couldn’t keep up. The GI office offered IV treatments in the office. Something to think of.

REPLY
tenor | @tenor | Jun 29, 2023

Does anyone have collagenous sprue? I was just diganosed with it and have been prescribed budesonide that I've been taking for 3 weeks.
Please let me know if you have gone through this, so far it's been a difficult ride for me.
Take care to you all.

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appletree | @appletree | Apr 1 4:29pm

Hello,

Anyone else diagnosed with Collagenous Sprue, Collagenous Colitis, and Collagenous Gastritis (at different times over the years)? Also, is there a medical name/term for all three together?

Thank you.

REPLY
pb50 | @pb50 | Jul 30 2:27pm
In reply to @astaingegerdm "@oakbourne - You have a double Whammy- 2 autoimmune diseases! Sorry you had celiac growing up...." + (show)
@astaingegerdm

@oakbourne - You have a double Whammy- 2 autoimmune diseases! Sorry you had celiac growing up. Did it affect your growth? As far as I’m aware, children were not routinely tested for celiac until some years ago- adults too. In my home country Sweden celiac is much more common.

My colitis started 12/08. I also spent time not more than 5 feet from the bathroom. I got very dehydrated. I was diagnosed after a couple of months and given methotrexate for 4 weeks. Diarrhea stopped, but I continued with other symptoms. I was tested for everything at Mayo. Still some diffuse inflammation. Also given Cholestyramine. Budesonide worked best - actually Prednisone was a dream, but couldn’t take it long term. Peptobismol always helped me, still does.
By 2015 I felt sick all the time. I wanted to try Imuran- immunosuppressive. Took it for 7 moths and I was healed- however, it’s risky because I did develop several bacterial infections andbefote I stopped my blood count was low.
I still have to be careful eating out- mostly because I don’t tolerate fat.

Jump to this post

I had microscopic colitis diagnosed about 2 years ago after a 7 month journey starting with a yersinia infection, treated with Bactrim that left a C-Diff infection and treatment for THAT, I had a colonoscopy that confirmed collagenous colitis. Budesonide was a miracle drug. I did a 9 week tapering course and went back to my life.
All was good until I had bilateral cataract surgery in April&May and was on a month long course of an ocular NSAID 4 times a day. But it’s eye drops! I know that ibuprofen is a trigger for me, as are PPIs. But my colitis relapsed and this time the Budesonide isn't working. Maybe it was the ocular eyedrops and maybe it was who knows what. But although a lot of pepto bismol capsules can give me enough relief to grocery shop or go to a Doctor appointment, it’s like having my finger in a dam.

I see my doc tomorrow to hear his thoughts. I have tapered off Budesonide so I can go in any treatment direction.

But I have an issue w/Budesonide in that it has stained my teeth really yellow. Has anyone else experienced that?? I saw my dentist today and they are calling drug manufacturer but she thinks it is intrinsic - like gray teeth from tetracycline.

This is the gift that just keeps giving. 🙄

REPLY
1 reply
Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Aug 5 1:34pm
In reply to @pb50 "I had microscopic colitis diagnosed about 2 years ago after a 7 month journey starting with..." + (show)
@pb50

I had microscopic colitis diagnosed about 2 years ago after a 7 month journey starting with a yersinia infection, treated with Bactrim that left a C-Diff infection and treatment for THAT, I had a colonoscopy that confirmed collagenous colitis. Budesonide was a miracle drug. I did a 9 week tapering course and went back to my life.
All was good until I had bilateral cataract surgery in April&May and was on a month long course of an ocular NSAID 4 times a day. But it’s eye drops! I know that ibuprofen is a trigger for me, as are PPIs. But my colitis relapsed and this time the Budesonide isn't working. Maybe it was the ocular eyedrops and maybe it was who knows what. But although a lot of pepto bismol capsules can give me enough relief to grocery shop or go to a Doctor appointment, it’s like having my finger in a dam.

I see my doc tomorrow to hear his thoughts. I have tapered off Budesonide so I can go in any treatment direction.

But I have an issue w/Budesonide in that it has stained my teeth really yellow. Has anyone else experienced that?? I saw my dentist today and they are calling drug manufacturer but she thinks it is intrinsic - like gray teeth from tetracycline.

This is the gift that just keeps giving. 🙄

Jump to this post

@pb50
I’m sorry you had a relapse. I was told after my treatment that it might relapse. So far it hasn’t, but I then developed another type of GI autoimmune inflammation- from mouth down.
I also get SIBO on and off and I get relief with Pepto Bismol. It acts as anti infectious as well as anti inflammatory.

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