Collagenous Gastritis

Hi i am in the UK and my daughter was diagnosed with this when she was 13. We don't know of any other uk paediatric cases and even our doctors haven't met any adults even with it (we are lucky enough to attend one of the best in the uk). Do any of you have children with this please who would like to share information? Thank you Alison.

Hello Allison, @alison486, and welcome to Mayo Connect,

I am sorry to hear that you daughter is ill with Collagenous Gastritis (CG), while I don't have that disorder myself, I have a lot of digestive tract problems and I understand how difficult they can be. Such as appetite problems, weight loss, etc.

We do have a number of Members who have discussed their children who have CG. I will ask a moderator (@colleenyoung, @kanaazpereira or @lisalucier) to move your post to the discussion of Collagenous Gastritis. Until then you can read about others with CG at this link, https://connect.mayoclinic.org/discussion/collagenous-gastritis/?orderby=DESC#chv4-comment-stream-header

In this discussion group you can meet @motherkat, @wendyt2018 and others who have recently posted about children, like your daughter, with CG.

If you are comfortable sharing more, could you tell us about your daughter's most difficult symptoms right now?

Thank you it is good to hear there are others. To our knowledge H is the only child in the uk with it. She has had it for 5 years starting with severe symptoms of anaemia and progressing to acute sudden bout of vomiting violently with severe blood loss every 9-12 months. Luckily she is pretty stable now but it would be lovely to hear that hopefully she will grow out it maybe fingers crossed. So little is known about it here. A

Hi i am in the UK and my daughter was diagnosed with this when she was 13. We don't know of any other uk paediatric cases and even our doctors haven't met any adults even with it (we are lucky enough to attend one of the best in the uk). Do any of you have children with this please who would like to share information? Thank you Alison.

@alison486
Here is a video about CG from a Mayo Clinic doctor about this disorder, I thought that you would find it interesting.
https://www.youtube.com/watch?time_continue=16&v=XY-0Fsv20sw

I hope that your daughter does well, @alison486. How is she currently being treated for this disorder? Any meds or diet suggestions?

Hi i am in the UK and my daughter was diagnosed with this when she was 13. We don't know of any other uk paediatric cases and even our doctors haven't met any adults even with it (we are lucky enough to attend one of the best in the uk). Do any of you have children with this please who would like to share information? Thank you Alison.

It sounds like she has improved considerably, @alison486. That must be a relief for you. In my opinion, a mother's heart is more touched by her child's pain than even her own pain. Will you keep in touch?

Hi i am in the UK and my daughter was diagnosed with this when she was 13. We don't know of any other uk paediatric cases and even our doctors haven't met any adults even with it (we are lucky enough to attend one of the best in the uk). Do any of you have children with this please who would like to share information? Thank you Alison.

Hi i am in the UK and my daughter was diagnosed with this when she was 13. We don't know of any other uk paediatric cases and even our doctors haven't met any adults even with it (we are lucky enough to attend one of the best in the uk). Do any of you have children with this please who would like to share information? Thank you Alison.