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.

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

kellye5 | @kellye5 | Jun 12, 2018
In reply to @jdav "Hi, I was diagnosed when I was 28 or 29. I'm 34 now.. Dr. Murray and..." + (show)
@jdav

Hi, I was diagnosed when I was 28 or 29. I'm 34 now.. Dr. Murray and Dr. Garg at Mayo Rochester have been the only doctors who have been able to help at all. I too can only eat tiny portions of food without feeling like I'm going to vomit or, will ultimately just vomit. Dairy, red meat, sugar, and carbs do not agree with me. I also tend to stick to small portions of chicken, fish and steamed veggies. They found that I have zero acid in my stomach, making it difficult to break any of the food down. I am always extremely exhausted, which is difficult with family and intense work obligations (which everyone can relate to). I'm also a distance runner, and I find it difficult to get adequate nutrition to fuel me for long runs.

On my week-long visit at mayo I was put on 2 different laxatives, due to stool overflow, prednisone, and something to get rid of the excess bacteria in my stomach (since my stomach has no acid, there is bacteria). I was also given an endoscopy, and a camera was inserted into my bloodstream that traveled to my stomach and took pictures-- which I thought was pretty innovative technology! Anyway, I was doing much better for about 2 months.. I was not vomiting and very little pain. And within the last month, my stomach has almost reverted, which is so disheartening. The only thing I'm able to keep down are scramble eggs. And I can only eat so many scramble eggs... I'm reading through everyone's recommendations, and going to try any diet changes that have worked for others. I really appreciate everyone's input.

My heart goes out to all of you dealing with this rare, ambiguous disease, and I hope you find the answers you need to feel better.

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@jdav I am so sorry that you are going through so much. My 24 year old son was diagnosed last summer. We spent 12 days in Mayo, Mn. in Feb this year. While we got answers and are trying everything( and love Dr. Murray and Dr. Cartee), we are looking at disability for him. Every food makes him sick so he eats extremely small portions. He takes zofran daily and lives in the br. The disease and what it brings with it make him exhausted and I imagine depressed although he tries. He has odd issues as well but I believe related: joint pain, boils, jaw pain(grinding from pain maybe), shoulder pain, neck and back, chest pain and of course stomach...

We wish this on no one. If you find anything that works please share or pm me with anything you might know of that might be helpful to my son.
Peace.

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jsaad | @jdav | Jun 12, 2018
In reply to @kellye5 "Hi. It has been Almost 6 weeks since our 12 day Mayo, MN visit. This Friday..." + (show)
@kellye5

Hi. It has been Almost 6 weeks since our 12 day Mayo, MN visit. This Friday my son Jacob, diagnosed with advanced CG, will finally see out SC internist who has been in touch with Dr. Cartee and will start his protocol. It has been a rough ride....I expect it to continue to be so but he is a trooper. Nausea continues daily, e exhaustion and leg and chest pain. Indigestion etc.He takes anti nausea medication often but life is not as it should be for a 24 year young man. Just a quick follow up. Hope you all are hanging in. You are in the best hands!

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Hi @kellye5 I'm sorry for your son. It is miserable, and I hope that he begins to feel better. Activity makes me feel better, and just not dwelling on it, but I understand that each case is unique with each specific set of challenges. I am in a challenging phase currently, and really can't give any advice as to what has worked for me, but I wish your son the best, and hope he is able to keep his spirits up.

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elsanio | @elsanio | Jul 14, 2018
In reply to @kanaazpereira "Hello @nm18, and welcome. I'm sorry to hear about your daughter, and so glad you've joined..." + (show)
@kanaazpereira

Hello @nm18, and welcome. I'm sorry to hear about your daughter, and so glad you've joined this group. I would sincerely encourage you to take a look at these videos on the Gastroenterology and GI Surgery Page on Connect:
– The Strange World of Non-Celiac Gluten Sensitivity https://connect.mayoclinic.org/newsfeed-post/the-strange-world-of-non-celiac-gluten-sensitivity-1/
– The Gluten-Free Diet: A Practical Look https://connect.mayoclinic.org/newsfeed-post/the-gluten-free-diet-a-practical-look-1/

I'm tagging @jng123 @guaranlam @bakingchick @mommyof6 @epvb @theresap @looloo @tlcollazo1230, who have all shared what works/what doesn’t with regard to various diets.

@nm18, has your daughter just started a gluten-free diet? May I ask if you could share more about how she managed her symptoms so far?

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himy dagther hav C G she is 9 year.she only take omperazol .she always have pain.There is someone who can help me.
tank Maria

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wendy2001 | @wendy2001 | Jul 14, 2018
In reply to @kanaazpereira "Hello @nm18, and welcome. I'm sorry to hear about your daughter, and so glad you've joined..." + (show)
@kanaazpereira

Hello @nm18, and welcome. I'm sorry to hear about your daughter, and so glad you've joined this group. I would sincerely encourage you to take a look at these videos on the Gastroenterology and GI Surgery Page on Connect:
– The Strange World of Non-Celiac Gluten Sensitivity https://connect.mayoclinic.org/newsfeed-post/the-strange-world-of-non-celiac-gluten-sensitivity-1/
– The Gluten-Free Diet: A Practical Look https://connect.mayoclinic.org/newsfeed-post/the-gluten-free-diet-a-practical-look-1/

I'm tagging @jng123 @guaranlam @bakingchick @mommyof6 @epvb @theresap @looloo @tlcollazo1230, who have all shared what works/what doesn’t with regard to various diets.

@nm18, has your daughter just started a gluten-free diet? May I ask if you could share more about how she managed her symptoms so far?

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Maria, there is a facebook group now. Collagenous Gastritis Discussion Group. Very helpful.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 14, 2018
In reply to @kanaazpereira "Hello @nm18, and welcome. I'm sorry to hear about your daughter, and so glad you've joined..." + (show)
@kanaazpereira

Hello @nm18, and welcome. I'm sorry to hear about your daughter, and so glad you've joined this group. I would sincerely encourage you to take a look at these videos on the Gastroenterology and GI Surgery Page on Connect:
– The Strange World of Non-Celiac Gluten Sensitivity https://connect.mayoclinic.org/newsfeed-post/the-strange-world-of-non-celiac-gluten-sensitivity-1/
– The Gluten-Free Diet: A Practical Look https://connect.mayoclinic.org/newsfeed-post/the-gluten-free-diet-a-practical-look-1/

I'm tagging @jng123 @guaranlam @bakingchick @mommyof6 @epvb @theresap @looloo @tlcollazo1230, who have all shared what works/what doesn’t with regard to various diets.

@nm18, has your daughter just started a gluten-free diet? May I ask if you could share more about how she managed her symptoms so far?

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@elsanio Hello Maria:

I'm glad you posted on Connect. I see that you are a new Member, welcome! I am a volunteer mentor on Connect and I was wondering how your daughter's CG was diagnosed?

I found a Youtube video made by a specialist at Mayo Clinic about this disorder. You might find it interesting. Here is the link, https://www.youtube.com/watch?v=XY-0Fsv20sw

I appreciate your sharing your daughter's story and I look forward to hearing from you again.

Teresa

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elsanio | @elsanio | Jul 14, 2018
In reply to @kacolton "@epvb I was diagnosed a couple years ago with collagenous gastritis (CG) by Dr. Murray and..." + (show)
@kacolton

@epvb I was diagnosed a couple years ago with collagenous gastritis (CG) by Dr. Murray and Dr. Acosta at Mayo Clinic, Rochester. It first started in 2013 after a stressful period i was experiencing heartburn all the time and anemia - i had an endoscopy, and they didn't see anything. Then, I had a massive GI bleed (hematemesis + melena). I was hospitalized for about 2 weeks and had a transfusion, and they did a bunch of endoscopies and just assumed I had regular case of bad gastritis. After that, i stopped eating or digesting anything that could make my gastritis worse, but I unfortunately had a second bleed in 2014, and that's when they finally found out about my CG. I contacted Joseph Murray at Mayo and they gave me budesonide to take twice a day. Although it has been helpful since then, I'm having a rebound of symptoms just recently, so I'm looking to connect with people to see what worked for them. I'm wondering if one day they'll find the root cause (like they did with celiac). A lot of the definitions/profiles of collagenous gastritis don't really fit my experience, so I'm curious to see what other people have been through.

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hello.do you know for CG?my doghter is CG.she only is 9 years.tank you if you information.

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Mindi | @mindi | Jul 22, 2018

I am no longer on Facebook due to privacy breach. Therefore I cannot access FB page.
If any useful information is put up on FB page concerning CG I hope it can also be posted on MayoConnect.
Thankyou.

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kellye5 | @kellye5 | Jul 22, 2018

Thanks for update. My son just started Busbar...we wil see. Nothing good to report so far.

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1 reply
Mindi | @mindi | Jul 22, 2018
In reply to @kellye5 "Thanks for update. My son just started Busbar...we wil see. Nothing good to report so far." + (show)
@kellye5

Thanks for update. My son just started Busbar...we wil see. Nothing good to report so far.

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@kellye5. I hope that helps your son. busbar.... what is it. Is that same as Budesonide?
Thank you

REPLY
kellye5 | @kellye5 | Jul 23, 2018

Anti anxiety...it is the second one we will have tried and of course he takes the prescription anti nausea meds daily. His Vit D is very low and he is weak and very tired but not anemic. It is a monsterous disease for anyone but especially for a young person.

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