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I was recently diagnosed with collagenous gastritis which is very rate. I’m looking for anyone else who has similar diagnosis.
Hello @epvb and welcome to Mayo Connect. We are happy to have you join our online patient support group. I’m sorry to hear of this rare diagnosis. I hope that you are coping well with it. If you will, please share with us a little about this rare disorder. We would be interested in knowing more about collagenous gastritis, such as how is it diagnosed, what the symptoms are and what kind of treatments are used. As we all share information, we learn from each other and also gain support. We look forward to getting to know you better! Teresa
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Our 15 year old daughter was just diagnosed today 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, and abdominal pain for just over 8 weeks now. EVERY DAY! So appreciate you taking the time to comment and share you struggles/challenges. Going to read more!
There is a facebook group call collagenous gastritis. Please join. My 17 yr old son has cg but no throwing up – just fatigue.Very thin and hard to gain weight. Very hard to deal with.
@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.
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.
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
I hope that your daughter does well, @alison486. How is she currently being treated for this disorder? Any meds or diet suggestions?
Here is a video about CG from a Mayo Clinic doctor about this disorder, I thought that you would find it interesting.
omg this is brilliant thank you. How wonderful to actually hear from someone with some exposure to it. 🙂
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