Collagenous Gastritis

It appears a year has past since you posted this. So sorry for your daughter, we know exactly what she's going through. Our 15 year old daughter was just diagnosed this week with CG (confirmed by results from multiple biopsies from her endoscopy last week)… I read her @guaranlam, Aug 24, 2017, post- "Tough to wake up, throw up, then be ready for the day", and she said, "Yep, that's me!"

She's been severely nauseous, made worse with movement- more especially in the morning, vomiting- almost daily (sometimes a couple times), and abdominal pain for 9 weeks today. Her life has changed from how she knew it! Augh!

We're in the Portland, Oregon, area and were able to find a super Peds GI doctor with tons of compassion, and we are hopeful with his direction.

We were wondering 2 things- what your daughter has done this past year, and what she's feeling like now. Please let us know. I agree that we should all work/talk together for each other! Maybe you started a personal patient study/survey- we'd love to join. 🙂

Went in to doctor today for our 15 year old daughter who was just diagnosed this week with CG (confirmed by results from multiple biopsies from her endoscopy last week).

She's been severely nauseous, made worse with movement- more especially in the morning, vomiting, and abdominal pain for 9 weeks today. EVERY DAY is a challenge to get out of bed, gag and gag, sometimes throw-up and sometimes just go back to bed. Nausea and pain in the abdomen last all throughout the day. Like a switch flipped in her body 9 LONG weeks ago today.

We live in the Portland, Oregon, area. We would very much like to know if there are any clinical studies done for CG for pediatrics. We have spoken with the Mayo Clinic in Minnesota and they told us of only studies for adults. That doesn't make much sense. Please let us know. 🙂

Thank you for sharing your stories. My 14 year old son was recently diagnosed with Collagenous Gastritis and we are currently fielding our way through a lot of information with not very much clarity on how to treat. Fortunately my son does not have severe symptoms except for ongoing illness due to iron deficiency. Since having an iron infusion, we have started a gluten free, dairy free diet but have had little support from our gastroenterologist in terms of dietary recommendations or management plan beyond proton inhibitors. I am keen to hear of any other suggestions and possible outcomes from anyone.

My son is on the GAPS diet and we are working with a GAPS practicioner. After trying different meds that didn't work, we opted for this route. It's the only thing that has helped. Very slow but steady improvement. Our practioner said it would take about two years to undo the damage. It has been 8 months and we are very happy.

There much first hand information from mostly the moms of children with CG on this facebook link: https://www.facebook.com/search/top/?q=collagenous%20gastritis%20discussion%20group, myself included.

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

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

@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

omg this is brilliant thank you. How wonderful to actually hear from someone with some exposure to it. 🙂