Collagenous Gastritis

Hi @mommyof6, my son was diagnosed one month ago and we live in the Bay Area. We have a GI at Stanford, but we are looking to fly to Boston for their specialist. Ours has him on an elimination diet, Prilosec twice a day, and a high-dose iron supplement. He was severely anemic as well, but the oral iron allowed his body to get to a low-normal range (although his stomach still shows bleeding). I'm sorry your daughter is going through this. Please let me know if you find anyone great out here.

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).

Our 31-year-old son was recently diagnosed with Callogeneous Gastritis, and also with a thickened and bowed mitral valve. His cardiologist says his mitral valve may or may not be connected to the thick lining in his stomach. The doctor wants him to have genetic testing for Marfan syndrome, as well. Our son was also, unofficially, diagnosed with Asperger's when he was about 3 years old. Our gastroenterologist is referring our son to the Mayo Clinic in Rochester. The gastroenterologists here in Idaho have never seen this disease before. We are hoping to get in to see Dr. Murray, as well as a cardiologist and whoever would do the testing for Marfan syndrome. Just wondering if any of the rest of you have heart issues or Marfan syndrome, or if any of you are on the autism spectrum. What, if any, other issues are you seeing with the gasstritis?

No not really … we don’t even know the reason for her fatigue. And doctor did not connect it to CG. We are ruling out other issues at the moment. Like cardiology and pulmonology …

Hello,
My daughter is 12 and has been diagnosed with Collagenous Gastritis 4 months ago (at 11 yrs old). Before diagnosis, she had suffered from anemia since 2019. Had to give a blood transfusion once and iron infusions very regularly as she was small and the doses were limited. As regularly as once a week to bring her ferritin and hemoglobin up. GI doctor initially could not find anything and it took a year and a half and 2 endoscopies/colonoscopies to find out the reason. I also got a second opinion on her pathology to confirm diagnosis.
She has been on PANTOPROZOLE for last 4 months, her hemoglobin and iron levels seem to be stable for last 6 weeks.

However, she gets extremely tired (shortness of breath) and complains of pounding headache and chest pain with physical activity, so much as few minutes of it. Just playing with her friends makes her tired. The symptoms pass after few minutes of rest. We have seen cardiologist completed echo cardiogram , EKG with no issues.

At the moment we are at the point of stress testing and getting appointments with pulmonologist. List of specialists never seems to end.

Did anyone else experience this? Would there be any improvement?

I am struggling to find information. She loves to dance and now not able to. Although she pushes herself to some extent.

As I found the group and read the comments, I realized I am not alone and there are others struggling.

Thank you all for suggestions and comments.

RJM

Hello, I was diagnosed with CG two years ago. I immediately made several changes including switching to a gluten free diet, I was instructed to go off my SSRI (Lexapro) because my GI Dr. Said there could be a correlation (anyone else aware of this?), I went off of my Prilosec, and have been taking a daily probiotic. I have been fairly symptom free since making these changes, with the occasional burning and bloating, however I just had my two year EGD yesterday and it showed no changes. I am pretty bummed/ worried because I am currently not taking anything medication wise to actually address this. My stomach issues started at a young age, having a small ulcer when I was 7/8. I also have Hashimotos which is an autoimmune thyroid disease. My Dr is unaware of any increased risk with stomach cancer related to CG, but does anyone have any information on this? I am super worried.

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.

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).

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