1. < Digestive Health

Collagenous Gastritis

Posted by e @epvb, Mar 27, 2017

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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chiinita2 | @chiinita2 | Feb 12, 2023
In reply to @calif "Hi, i just saw this post, and i also have collageneous gastritis. Was diagnosed about 3..." + (show)
@calif

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.

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Hi. I'm so glad to hear you were able to find a way to help with symptoms. My daughter was diagnosed a few years ago. It been a Rollercoaster of emotions seeing my daughter going to it all. I'm currently working on changing up her diet. Do you have a book or recipes you can share.

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chiinita2 | @chiinita2 | Feb 12, 2023
In reply to @ru4tarheels "I was diagnosed with collagenous gastritis 3-4 years ago and continue to fly to Boston from..." + (show)
@ru4tarheels

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).

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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 ?

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1 reply
ru4tarheels | @ru4tarheels | Feb 16, 2023
In reply to @lauribeth "Did they say dieulefoy lesions?? Do you also have Ehlers Danlos?" + (show)
@lauribeth

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

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They said they don't know if it was a dieulefoy, but I do not have Ehlers Danlos

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ru4tarheels | @ru4tarheels | Feb 16, 2023
In reply to @chiinita2 "Hi. My daughter is having the same issues but they never seem to find where the..." + (show)
@chiinita2

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 ?

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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!

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1 reply
jsaad | @jdav | Mar 29, 2023

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!

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2 replies
susangourdlady | @susangourdlady | Apr 4, 2023
In reply to @jdav "Hi everyone. I just found out this group exists. I was diagnosed with collagenous gastritis about..." + (show)
@jdav

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!

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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.

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1 reply
smarie72 | @smarie72 | Apr 16, 2023
In reply to @jdav "Hi everyone. I just found out this group exists. I was diagnosed with collagenous gastritis about..." + (show)
@jdav

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!

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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?

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1 reply
jsaad | @jdav | Apr 16, 2023
In reply to @smarie72 "Hi, I just stumbled across this group in my search. My daughter has collagenous gastritis. Her..." + (show)
@smarie72

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?

Jump to this post

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.

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1 reply
smarie72 | @smarie72 | Apr 16, 2023
In reply to @jdav "I’ve had 2. Not working yet. Still vomiting all solid food and almost liquids and losing..." + (show)
@jdav

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.

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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.

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firedragon23 | @firedragon23 | May 21, 2023

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.

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