Collagenous Gastritis

Hi! Yes!!! I have had maybe 10 major upper GI bleeds over the past 7ish years. They tend to be quick and by the time they get me in to have an endoscopy, my stomach may be a little bloody but they are unable to find the source of the bleeding. I am not sure how frequently your daughter has these issues, but mine happen infrequently enough (knock on wood haha) that it appears to be a slight inconvenience in my life. The last time I had a GI bleed, my doctors got me in within ~5 hours and found an area they thought might be the location of the bleed and added clips to it. I am hoping to have another endoscopy soon to see if inflammation in that area decreased. I hope your daughter feels better!

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!

I have microscopic colitis of the collagenous kind. So far I have tried only one medication for it can't remember what it was. It did not help. I have a new gastroenterologist now, so I am hoping he can help.

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.

I really appreciate your response. I'm truly sorry you're not getting any relief at this point. Sounds extremely frustrating that you were denied NG tube. Fingers crossed the infusions start working.

I was just diagnosed with this about two weeks ago. I've had collagenous colitis diagnosed since 2020. My nurse practitioner was shocked to see that I was diagnosed with CG. She talked to my doctor and they are in talks with Dr. Murray at mayo clinic Rochester. My GI doctor are in Jacksonville FL. I was told by my nurse practitioner, that she's only seen one other person with this. I'm hoping to get more answers and a treatment asap. I've been miserable.

I have collagenous colitis as well. I was on entocort, but now need an option for the collagenous gastritis. They were thinking maybe a different form of entocort, generic us called budesonide.

I was just diagnosed recently with CG, also Collagenous Duodenitis and Collagenous Colitis. I am about to start treatment with budesonide. This is all new to me and am looking for ways to help my body heal. I am very weak, malnourished and dehydrated after months of living with this before and after my diagnosis. I have not eaten gluten since 2014 (until 2 weeks ago when I had to eat it for my celiac test which was negative). I look forward t reading more here.

If you want to learn if you have celiac, 2 weeks of eating gluten is not enough. The usual mention is several weeks, even up to 3 months. Otherwise, tests show up negative if you have been eating gluten free.
That's why it is important to take a celiac test before going gluten free. It is very hard to decide to retake gluten after feeling better without it. Many practiconers say 'try eating gluten free' and not first offer to give a celiac test. So sad after all that is known about celiac.
When I was diagnosed with celiac, I also was diagnosed with microscopic colitis.