Collagenous Gastritis

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.

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!

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?

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?

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?

@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.

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