Collagenous Gastritis

Posted by e @epvb, Mar 27, 2017

I was recently diagnosed with collagenous gastritis which is very rate. I’m looking for anyone else who has similar diagnosis.

@kacolton

@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.

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Hi there. Nice to meet you yet so sorry for the circumstances. I’m so sorry to hear how you are struggling with this. My 13yo daughter was just diagnosed with CG. She lives with constant stomach pain, lethargy, yet her iron levels are normal. We’ve not tried any meds or dietary changes yet. She also has a slightly enlarged liver & bulky spleen. I’m wondering if any of you have had either of these diagnosed? Curious to know if there is a relatoinship between the two.

I am SO interested in the study results of the similar gut bacteria that you mention. I would love if you could send me the links to the forum & the medical study. As there are so few of us, I feel that I want to collate as much individual case info as possible. A survey of sorts, that may be presented to all Gastroenterology/Medical/Naturopathy associatons for consideration to prompt further study. I notice CG is not isolated to a particular part of the world (we are in Australia) how good would it be to get all countries involved in trying to find a cause/cure?

Any ideas on how to start our own personal patient study/survey would be great! Let’s beat this thing together.

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@kacolton

@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.

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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.

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@kacolton

@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.

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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.

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@kacolton

@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.

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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!

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@hopeful33250

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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Hi, i just saw this post, and i also have collageneous gastritis. Was diagnosed about 3 years ago after a second bout of vomiting blood, the last ultimately resulting in blood transfusions after complications from an endoscopy. At least at this
point I’m fortunate in that i feel well most of the time. I’ve found that eating a very
“clean” unprocessed diet helps tremendously, alcohol seems to make it worse. I take proxtonix, often every day, but when I’m eating very well i often don’t need meds. If you’d like to speak further please message me. I’ve never met anyone else with this diagnosis and I’m glad to hear there are doctors known to work with this diagnosis since my GI hasn’t seen it before. Thanks for posting.

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@hopeful33250

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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Hello @calif,

Welcome to Connect; thank you for joining us and sharing your history. Isn’t it amazing how diet plays such a significant role in our health and well being! @guaranlam @galy @mjgarr (who has microscopic colitis), have also written about the diet changes they’ve had to make, and I hope they also join us with their insights.

@calif, may I ask what other changes you’ve had to make, besides diet? Are there any particular medications that have helped?

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@hopeful33250

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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I’ve switched from a relatively healthy but regular American diet to one of mostly unprocessed foods focused on vegetables and fruit and avoiding white flour products, fried food and packaged snacks/candy. Recently i added in a morning smoothie which has enabled me to go off of my daily does of proxonix. I believe the key ingredients making the difference are fresh ginger, turmeric and cinnamon. I also add frozen banana, flax seed meal, organic almond milk, spinach and other frozen fruit such as cherries. May not sound appealing but it’s quite good. The addition of any red fruit does give it a gross color, but since it works for me i don’t mind. Happy to provide any additional info that would be helpful, I’m grateful to have found people who have even heard of this diagnosis.

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@hopeful33250

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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I forgot to answer your question about changes I’ve made other than diet. I have always exercised fairly consistently, so i can’t compare sedentary vs active lifestyle. I have found stress often causes symptoms, so having less stress in my life over the last couple of years may have helped with my symptoms as the episodes of vomiting blood and intense pain have not occurred in the last two years. Before i started with the diet changes i found taking the protonix every single day was imperative, i would notice symptoms almost immediately after eating if i skipped a dose. However, I’ve been almost entirely off meds for the last few months with the diet changes.

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@hopeful33250

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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Thank you so much for following up, @calif. Isn’t that so true, that stress can have quite an impact on our health! In fact, here’s a published study which you may wish to read:
The Effect of Emotional Stress and Depression on the Prevalence of Digestive Diseases: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4398234/

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I was diagnosed about 3 years ago after a bout of parasites and bacteria gone crazy in my gut. The antibiotics raged havoc. Was it because I already had this unusual condition or was the condition a result of the antibiotics…I don’t think I’ll ever know. At this point I continue to work at maintaining and gaining weight by eating frequently throughout the day. And eating as healthy as I can in order to stay strong and nutritionally well. The side effects are few…running nose when my stomach is getting full and phelgm accompanied by belching when its reach the limit. I take Diovol antacids which work quickly and effectively.

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Hello, I was diagnosed with CG two years ago. I immediately made several changes including switching to a gluten free diet, I was instructed to go off my SSRI (Lexapro) because my GI Dr. Said there could be a correlation (anyone else aware of this?), I went off of my Prilosec, and have been taking a daily probiotic. I have been fairly symptom free since making these changes, with the occasional burning and bloating, however I just had my two year EGD yesterday and it showed no changes. I am pretty bummed/ worried because I am currently not taking anything medication wise to actually address this. My stomach issues started at a young age, having a small ulcer when I was 7/8. I also have Hashimotos which is an autoimmune thyroid disease. My Dr is unaware of any increased risk with stomach cancer related to CG, but does anyone have any information on this? I am super worried.

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@kacolton

@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.

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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?

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