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Collagenous Gastritis
I was recently diagnosed with collagenous gastritis which is very rare. I'm looking for anyone else who has similar diagnosis.
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I was recently diagnosed with collagenous gastritis which is very rare. I'm looking for anyone else who has similar diagnosis.
Interested in more discussions like this? Go to the Digestive Health Support Group.
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My daughter was diagnosed with Collagenous Gastritis on 6/22/26. We would love to hear from anyone who has had any success with helping stomach pain.
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1 ReactionI have Collagenous Microscopic Colitis. I'm sorry I've never heard of Collagenous Gastritis. The normal treatment for Microscopic Colitis is Budesonide; unfortunately, this hasn't worked for me. I keep relapsing, so we are looking at other options.
@brittanyul - welcome to Mayo Clinic Connect. Your daughter is lucky to have you in her corner. I'm glad to hear she has a diagnosis so you can have some direction for treatment.
When she was diagnosed, did the doctor address her stomach pain? If so, was a medication and/or some type of self-care prescribed for this?
Thank you for the warm welcome! We went to many different specialists and had so many labs but no one could figure out the pain. They wanted to send her to a pain clinic or put her on antidepressants but her heart wasn’t strong enough for what they were prescribing. So finally after 2 upper GI scopes, the pathology report confirmed collagenous gastritis. They tried so many meds up to that point with no improvement in pain reduction. Currently, she is taking budesonide 3x per day and still no relief. Tomorrow will be 14 days on the steroids.
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1 Reaction@szelisk
Hello! I’m not surprised you haven’t heard of it- I guess it is very rare. I really hope you find something that does help you! We tried to very strict AIP diet and we were so hopeful, but after 60 days and absolutely no improvement in stomach pain, headaches, lethargy or body aches, we started to re introduce foods. I thought she might have increased symptoms with reintroduction , but nothing there either, so we are looking into other options too.
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1 Reaction@brittanyul
I also was diagnosed with collagenous gastritis and prescribed budesonide. I was told to open the capsules and take the granules on a spoon of plain yogurt
@sleepywinter
I’m so sorry for your diagnosis. I hope the meds help you 🩷
She was on budesonide for 3 months and absolutely no improvement! Dr tried prednisone and that didn’t help either… just gave her terrible headaches and nausea. They are referring us to another specialist but he hasn’t treated CG before. I can’t find a doctor willing to treat her. 😔