Collagenous Gastritis

Hi, i just saw this post, and i also have collageneous gastritis. Was diagnosed about 3 years ago after a second bout of vomiting blood, the last ultimately resulting in blood transfusions after complications from an endoscopy. At least at this
point I'm fortunate in that i feel well most of the time. I've found that eating a very
"clean" unprocessed diet helps tremendously, alcohol seems to make it worse. I take proxtonix, often every day, but when I'm eating very well i often don't need meds. If you'd like to speak further please message me. I've never met anyone else with this diagnosis and I'm glad to hear there are doctors known to work with this diagnosis since my GI hasn't seen it before. Thanks for posting.

I was diagnosed with collagenous gastritis 3-4 years ago and continue to fly to Boston from the Southeast US at least once a year. Working with my doctor, I have found a treatment that works well and he thinks through every treatment. Definitely worth a visit to see the specialist. Before seeing him, I had a hemoglobin that got down to 4 once and had more frequent episodes. I will say, my disease seems to present differently than most (massive and unpredictable upper GI bleeds so my treatment is likely much different than others).

Did they say dieulefoy lesions??
Do you also have Ehlers Danlos?

Hi. My daughter is having the same issues but they never seem to find where the bleed is coming from. Were your doctors ever able to find where the bleed was coming from and how to stop it from happening ?

Hi everyone. I just found out this group exists. I was diagnosed with collagenous gastritis about 6ish years ago. It's drastically changed my life. I used to be a marathon runner-- the only thing I marathon now are episodes of real housewives. In my case I can't eat solid food without vomiting and a lot of liquids as well, which leaves me with very little energy and dehydrated a lot. I'm treated at Mayo and they are trying Entyvio infusions on me which are traditionally used for UC. But anyway, I'm wondering if anyone has had any other successful treatments? I've been on 3 different types of steroids and none have worked. Thanks, I hope everyone is having a great week!

Hi everyone. I just found out this group exists. I was diagnosed with collagenous gastritis about 6ish years ago. It's drastically changed my life. I used to be a marathon runner-- the only thing I marathon now are episodes of real housewives. In my case I can't eat solid food without vomiting and a lot of liquids as well, which leaves me with very little energy and dehydrated a lot. I'm treated at Mayo and they are trying Entyvio infusions on me which are traditionally used for UC. But anyway, I'm wondering if anyone has had any other successful treatments? I've been on 3 different types of steroids and none have worked. Thanks, I hope everyone is having a great week!

Hi, I just stumbled across this group in my search. My daughter has collagenous gastritis. Her doctor mentioned trying Entyvio. Did you start on infusions yet?

I’ve had 2. Not working yet. Still vomiting all solid food and almost liquids and losing weight. They denied me an NG tube at Mayo because I wasn’t “malnourished enough.” I drink one daily harvest shake a day over a 12 hour time frame and then broth at night. That’s currently all my stomach can tolerate. But the infusions don’t work for at least 3 months. Fingers crossed.