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Collagenous Gastritis – Searching for Answers

Nov 6, 2018 | Kanaaz Pereira, Connect Moderator | @kanaazpereira | Comments (28)

Joseph Murray, M.D., talks about a rare condition – collagenous gastritis – and about Mayo Clinic’s ongoing research to better understand the causes, and try and find the best treatment for this condition.

Dr. Murray, M.D.,  is a gastroenterologist and celiac disease expert at Mayo Clinic.

Meet others talking about collagenous gastritis on Mayo Clinic Connect – an online community where you can share experiences, ask questions, and find support from people like you.

4 Reactions

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Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 1, 2021
In reply to @odieanne63 "I have collagenous gastritis. I was first diagnosed 10 years ago. Prednisone about did me in...." + (show)
@odieanne63

I have collagenous gastritis. I was first diagnosed 10 years ago. Prednisone about did me in. I am on my 3rd flare up in 10 years. I was treated with budesonide and placed on a feeding tube. The first two times I completely healed after 4-5 months. This third time I got a little better and was able to go back to work but now it is flaring up again. I was referred to Mayo and have an appointment in 6 weeks. My current doctor had me open up the budesonide and put it in apple sauce to better treat the stomach since it is designed to treat your intestines. I am frustrated and worried. Hoping to find some answers. There is a local ketamine office where I live and occasionally get iv infusions with vitamins and minerals. It makes me feel better right away but doesn't last and is expensive.

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Hi OdieAnne, welcome to Mayo Clinic Connect. You may wish to connect with other members including @ken82 in this discussion in the Digestive Health group

- Collagenous Gastritis https://connect.mayoclinic.org/discussion/collagenous-gastritis/

I'll be interested to hear what you learn at your upcoming Mayo appointment.

REPLY
lelarkin | @lelarkin | Sep 2, 2021
In reply to @odieanne63 "I have collagenous gastritis. I was first diagnosed 10 years ago. Prednisone about did me in...." + (show)
@odieanne63

I have collagenous gastritis. I was first diagnosed 10 years ago. Prednisone about did me in. I am on my 3rd flare up in 10 years. I was treated with budesonide and placed on a feeding tube. The first two times I completely healed after 4-5 months. This third time I got a little better and was able to go back to work but now it is flaring up again. I was referred to Mayo and have an appointment in 6 weeks. My current doctor had me open up the budesonide and put it in apple sauce to better treat the stomach since it is designed to treat your intestines. I am frustrated and worried. Hoping to find some answers. There is a local ketamine office where I live and occasionally get iv infusions with vitamins and minerals. It makes me feel better right away but doesn't last and is expensive.

Jump to this post

I am newly diagnosed with EPI (exocrine pancreatic insufficiency) and collagenous colitis (thinking it is the same as collagenous gastritis). Not sure which is which so far, but the digestive enzymes for EPI have helped. Not sure which symptoms are which but a good day is a good day. I'm sure we'll talk more.

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 5, 2021
In reply to @lelarkin "I am newly diagnosed with EPI (exocrine pancreatic insufficiency) and collagenous colitis (thinking it is the..." + (show)
@lelarkin

I am newly diagnosed with EPI (exocrine pancreatic insufficiency) and collagenous colitis (thinking it is the same as collagenous gastritis). Not sure which is which so far, but the digestive enzymes for EPI have helped. Not sure which symptoms are which but a good day is a good day. I'm sure we'll talk more.

Jump to this post

Hi lelarkin,
You may also be interested in this discussion group:
- New to exocrine pancreatic insufficiency (EPI): What helps? https://connect.mayoclinic.org/discussion/severe-exocrine-pancreatic-insufficiency-epi/

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kellbell8 | @kellbell8 | Jun 5, 2022

I have what may be a stupid question....but can taking collagen supplements in pill or powder form cause this?

REPLY
1 reply
oliviakennedy | @oliviakennedy | Jan 16 8:36pm

Hello! I was diagnosed with collagenous gastritis two years ago in Chile. It started with anemia and with pain when I ate (whatever I ate, even the blandest things), and with those symptoms, an endoscopy, and several blood tests (that discarded celiac disease and diabetes), I got a diagnosis. I started treatment with Omeprazole and medication to treat the anemia, but after almost a year, that didn't work. After that treatment, my doctor prescribed budesonide, but prepared in a way that it could act in the stomach, not in the colon. I've been with this new treatment (accompanied by the anemia medication) for about eight months, and it hasn't worked that well on eliminating the collagenous gastritis, it has only helped with the pain.
I tried a holistic diet that eliminates diary products, gluten, any ultra-processed foods, and diminishing carbohydrates, but it only increased the pain in my stomach.
I am very interested in any opinions regarding how I should proceed with my situation.

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 21 3:37pm
In reply to @oliviakennedy "Hello! I was diagnosed with collagenous gastritis two years ago in Chile. It started with anemia..." + (show)
@oliviakennedy

Hello! I was diagnosed with collagenous gastritis two years ago in Chile. It started with anemia and with pain when I ate (whatever I ate, even the blandest things), and with those symptoms, an endoscopy, and several blood tests (that discarded celiac disease and diabetes), I got a diagnosis. I started treatment with Omeprazole and medication to treat the anemia, but after almost a year, that didn't work. After that treatment, my doctor prescribed budesonide, but prepared in a way that it could act in the stomach, not in the colon. I've been with this new treatment (accompanied by the anemia medication) for about eight months, and it hasn't worked that well on eliminating the collagenous gastritis, it has only helped with the pain.
I tried a holistic diet that eliminates diary products, gluten, any ultra-processed foods, and diminishing carbohydrates, but it only increased the pain in my stomach.
I am very interested in any opinions regarding how I should proceed with my situation.

Jump to this post

Hi @oliviakennedy, you may wish to connect with other members talking about collagenous gastritis in the Digestive Health support group.

See this listing of related discussions: https://connect.mayoclinic.org/search/discussions/?search=collagenous+gastritis

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psimchak | @psimchak | 1 day ago

My 18-year old daughter was diagnosed with collagenous gastritis and has terrible stomach pain and nausea. Some days aren't so bad, but some days she just sleeps on the floor in the bathroom. She's tried budesonide and is currently taking zofran for the vomiting. Nothing is really helping.

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debhammel | @debhammel | 18 hours ago
In reply to @kellbell8 "I have what may be a stupid question....but can taking collagen supplements in pill or powder..." + (show)
@kellbell8

I have what may be a stupid question....but can taking collagen supplements in pill or powder form cause this?

Jump to this post

I recently asked my gastroenterologist this question and she didn't know. I've discontinued taking collagen supplements just in case. . . .

REPLY
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