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.

Interested in more discussions like this? Go to the Digestive Health Support Group.

I am 18 years old, female, and had GI issues for about a year before getting a colonoscopy and an endoscopy. the symptoms I had were progressively worsening and they found during the endoscopy that I had CG. They gave me the diagnosis and a pill to help the nausea and I was sent on my way. I feel lost in what to do next, eating is so painful and uncomfortable I just stopped but that made everything worse. does anyone have any tips? or know any experts or researchers? I'm unable to do the things I love and I feel really discouraged.

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@msibs

I am 18 years old, female, and had GI issues for about a year before getting a colonoscopy and an endoscopy. the symptoms I had were progressively worsening and they found during the endoscopy that I had CG. They gave me the diagnosis and a pill to help the nausea and I was sent on my way. I feel lost in what to do next, eating is so painful and uncomfortable I just stopped but that made everything worse. does anyone have any tips? or know any experts or researchers? I'm unable to do the things I love and I feel really discouraged.

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I want to add also that I don't have all the symptoms that the people have reported for this condition on what little research there is. and I don't want to go down a rabbit hole of endless medications and side effects to be moderately ok. now though, it is at a point where if I don't eat I will almost pass out when I sit or stand, and I can barely move my body because it's too much energy. Or I can eat and have some energy but feel so full (from even just a nutrition shake or a hard-boiled egg) that it feels hard to walk or I get pain and nausea. Does anyone else feel like This? is there anything that helped you? I feel kind of alone with this.

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@wendy2001

@kellye Totally understand what you are going through. Mine is 17 yrs old. Diet is the only thing helping. Very hard to do but a have to.

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I was wondering what diet it is, it seems like no matter what I eat now (I am 18 yrs female) I get so uncomfortable and bloated even if it's just a nutrition smoothie.

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@msibs

I want to add also that I don't have all the symptoms that the people have reported for this condition on what little research there is. and I don't want to go down a rabbit hole of endless medications and side effects to be moderately ok. now though, it is at a point where if I don't eat I will almost pass out when I sit or stand, and I can barely move my body because it's too much energy. Or I can eat and have some energy but feel so full (from even just a nutrition shake or a hard-boiled egg) that it feels hard to walk or I get pain and nausea. Does anyone else feel like This? is there anything that helped you? I feel kind of alone with this.

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I totally relate to what you are going through and how you feel. I feel the same most of the time. Do you mind sharing what you do to cope with your condition? I seriously think about euthanasia and would probably opt for it if was legally available where I live. Unfortunately I can't travel to where it is.
May God help us!

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@msibs

I am 18 years old, female, and had GI issues for about a year before getting a colonoscopy and an endoscopy. the symptoms I had were progressively worsening and they found during the endoscopy that I had CG. They gave me the diagnosis and a pill to help the nausea and I was sent on my way. I feel lost in what to do next, eating is so painful and uncomfortable I just stopped but that made everything worse. does anyone have any tips? or know any experts or researchers? I'm unable to do the things I love and I feel really discouraged.

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Hello @msibs and @mahmudhasan. You may noticed I moved your discussion to an existing discussion on Collagenous Gastritis - https://connect.mayoclinic.org/discussion/collagenous-gastritis/. I did this so you could read the experiences of other members. The discussion is a robust one, but may provide many different insights on how members manage their diagnosis.

@mahmudhasan, the Connect community understands that you are in a difficult place right now and we want you to know that we are here for you. This is a safe place to talk as you feel the need. I also want you to know about the 988 Suicide & Crisis Lifeline (https://988lifeline.org/) that you can call or text any time for immediate help. Even if you are not actively considering this, it is a great resource to talk about those feelings and ideations and to get additional support if you need it.

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@mahmudhasan

I totally relate to what you are going through and how you feel. I feel the same most of the time. Do you mind sharing what you do to cope with your condition? I seriously think about euthanasia and would probably opt for it if was legally available where I live. Unfortunately I can't travel to where it is.
May God help us!

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I just wait for the times that it hurts to pass then try to continue life as normal but I'm going to start seeing a dietician and get another opinion. i started drinking meal replacement smoothies and I have some energy back.

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@mahmudhasan

I totally relate to what you are going through and how you feel. I feel the same most of the time. Do you mind sharing what you do to cope with your condition? I seriously think about euthanasia and would probably opt for it if was legally available where I live. Unfortunately I can't travel to where it is.
May God help us!

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I am very grateful for what i can still do, and focusing on that and being grateful is what keeps me motivated, and watching comedy movies definitely helps. mindset is the hardest thing in my opinion. i have accepted that i will feel like this and it is still frustrating but now instead of being stuck in a "why is this happening" i am looking for solutions and not giving up trying new things because trust me, life is worth living.

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I recently started budesonide and am seeing a little bit of progress. it goes back and forth and I was wondering if anyone has any recommendations of anything they have tried that's helped diet wise or exercise wise to ease symptoms.

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My 10 year old daughter was just diagnosed with CG. Her doctor had never seen it before, he is reaching out to other Doctors for more information. Jazlynn has been dealing with vomiting spell, heartburn. She takes Nexium to help and it improves her vomiting to a point but still has pain in her stomach. Jazlynn just recently started her cycles which are turning out to be heavy and irregular, the stomach pain seems to get worse during this time. She has had a long road of constipation. Does anyone else have constipation at all? What are some things we can try to help her or foods that make it worse or better?
All help and knowledge is very appreciated.

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@breannalee89

My 10 year old daughter was just diagnosed with CG. Her doctor had never seen it before, he is reaching out to other Doctors for more information. Jazlynn has been dealing with vomiting spell, heartburn. She takes Nexium to help and it improves her vomiting to a point but still has pain in her stomach. Jazlynn just recently started her cycles which are turning out to be heavy and irregular, the stomach pain seems to get worse during this time. She has had a long road of constipation. Does anyone else have constipation at all? What are some things we can try to help her or foods that make it worse or better?
All help and knowledge is very appreciated.

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Hello,
i'm sorry to hear about your daughter. I have constipation as well as CG and gluten free has helped a little bit, less refined sugar has also helped some. I haven't found a specific diet though that helps both. If her constipation isn't so sever try fiborous foods but I was told that because mine was more sever I should stay away from fiborous foods. i have been doing Pelvic floor physical therapy maybe some stretches or exercised would help. I hope she feels better. It's a tough situation but try to keep her positive and distracted it helps so much.

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