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.

chiinita2 | @chiinita2 | Jun 29, 2023

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.

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.