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@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.
Replies to "@epvb I was diagnosed a couple years ago with collagenous gastritis (CG) by Dr. Murray and..."
Fecal transplants seem to be hugely successful in Aus also in c diff patients as well as ulcerative colitis. Have not heard if they help with upper GI issues like ours though. I have my natropath on the case & he has sited info that suggests that some success in treatment has been seen in gluten free diets, specific probiotics & herbs like Boswellia. Has anyone tried any of these or other natural alternatives? The more I read about steroidal & PPIs...the more worried I become. I absolutely agree that they have a place, but trying I'm to avoid these as my daughter is only 13. i'd also love to hear from anyone else who has been diagnosed with an enlarged liver or bulky spleen? It may be in response to CG but completely unrelated. Hope everyone is having a 'good' day.
Hi There!
Hope you are doing well? I am desperately interested in the study results of the gut bacteria levels also. Would you mind sending them to me? Thanks so very much. Doing everything I can to research & share...has lead me down the path of immunology. What an interesting road that has been!
Hi @nando73,
Welcome! I like your user name, and was curious to know if it has anything to do with Nando's, (peri peri chicken) which I hear is very popular in Australia 🙂
Here's the link with details about the clinical trial at Mayo Clinic: http://www.mayo.edu/research/clinical-trials/cls-20314533?_ga=1.105687232.292424276.1484505519
Might I suggest that you also contact Mayo Clinic’s Research Information Center, http://mayocl.in/2rpp3SW?
You can call them at 800-664-4542, although if you are in Australia, it may be more helpful to email them at clinicaltrials@mayo.edu or fill out this contact form, https://www.mayo.edu/research/forms/clinical-trials
Mayo staff members respond to inquiries within three business days.
Since you and some other members mentioned fecal transplants, I'd encourage you to view the Gastronetrology & GI Surgery Page here on Connect: https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/. It has a number of videos and posts by Mayo Clinic experts, about this procedure.
I'm also tagging @rpkelderman who has written about enlarged spleen and I hope, may be able to offer more insight.
@nando73, has your daughter been tested for celiac disease?
VI live in Sweden, my daughter is CG vi don’t have an specialist doctor here my daughter is 9 yo she is paint and I always crying and I don’t know what vi are doing .please help us.
Thank
I don’t know where in Sweden you live, but usually you find specialists at the major hospitals- especially university hospitals. Could you ask her regular doctor if they can find out for you and give her a referral. Don’t give up. In my experience one has to be a little pushy to get things done there. Good luck!
hello.do you know for CG?my doghter is CG.she only is 9 years.tank you if you information.
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. 🙂
Are you connected to the collagenous gastritis discussion group on Facebook? Lots of good info there. My daughter has CG. She's 20 years old and a Junior in college, doing well. She has changed her diet (no gluten) and takes a low dose of omeprazole (10 mg). When her stomach doesn't "feel right," she takes Arnica Montana, 30C homeopathic drug. It seems to help keep blood where it belongs. (Maybe a placebo affected but it has worked last two times she suspected a bleed while in college. She spent many days in the hospital with transfusions when she was 14 and 15 years old. Stress management also seems to help. Hope this helps.
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I didn't have an enlarged liver or bulky spleen. My gallbladder was functioning poorly and had that surgery. Not sure if that was related or because of my own dietary choices.
In prevention magazine my wife found an article hat fecal transplants are helping people with C Diff. I thought it would worth a shot to see if it helps me but they won't do it unless I have c diff.