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