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. 🙂

I was diagnosed around 20 years ago. I was only the 7th case my specialist had ever diagnosed. so it was a little rare at that time. I had had symptoms for 10 years or so and had not gone to a specialist. So, now, I have had the symptoms for about 40 years. My doctor said in 2015 that it would burn itself out. It didn't. There was a time when I was so much in pain that I was wishing they would just remove my intestines. lol Sometimes it is still that bad. Do we really need to have to take meds forever for this ?

I understand what you mean by wanting to get rid of intestines! I was diagnosed 2009, initially treated with methotrexate. Symptoms returned, but a little different. I was sick for about 8 years, prednisone always worked short term , but then symptoms returned. Finally in 2015 I started immunosuppressive medication for several months. So far so good!

Does anyone know how one may acquire CG. This is one of the diagnoses that has been brought up to me as a reason for my loose stools (twelve weeks since finishing a round of Clindimycin). CDiff has tested negative twice. My next option is a colonoscopy. This is all frightening. Was healthy until this happened.

@guthealth - it is an autoimmune disorder I was told.

Thank you.

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.