I was recently diagnosed with collagenous gastritis which is very rare. I'm looking for anyone else who has similar diagnosis.
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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.
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.
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/
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.
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.
@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.
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 firstname.lastname@example.org 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?
Hello @hhp3 and @canadianron,
Welcome to Connect. I hope you’ve had a chance to view the messages in this discussion; it is an an incredibly informative group where members continue to share their experiences with this rare disease.
@hhp3, your doctor seems to be correct, in that there is no increased risk of stomach cancer related to CG. According to the National Institutes of Health, “In the majority of adults, the condition seems to follow a chronic, intermittent course, with no significant mortality risk or severe progression.” https://rarediseases.info.nih.gov/diseases/10961/collagenous-gastritis
However, some studies have found an association with autoimmune diseases, particularly celiac disease. Have you had any tests to rule out celiac disease, @hhp3?
I’d also encourage you all to view the Gastroenterology & GI Surgery Page on Connect, https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/ where you will find videos, posts by Mayo clinic experts, especially with regard to the link between our gut bacteria and digestive health.
In the meantime, I hope @epvb @sodonnell, @shosh37 @kacolton @ibrown51484 @mindi @knutrition @galy @mjgarr, and others will also return with their insights.
@hhp3, as @candianron noted, have you made significant changes to your diet? Have either of you noticed what works, or what foods can act as triggers?
Hello! Thank you all for posting in this page. I can not tell you how helpful it is, because it doesn’t seem like there is a lot of information out there. My daughter was just diagnosed with CG at 11 years of age. She really doesn’t have a lot of symptoms and I’m so grateful. Seems like CG can be really painful.
She has some food sensitivities (pineapple). She was being tested because she is small for her age (7% in height and less than 1% now in weight and her bone age has not progressed in a year and is behind). Her celiac marker came back abnormal, so upon an endoscope and other labs, they have told us now she has CG and lactose intolerance. She has been taking Prilosec for about a week with no known help (although like I said no real GI symptoms most of the time). Anybody find help with acid blockers? They want to then scope her a ton in a few months (another endoscope, colonoscopy, and possible MRI). I really don’t feel good about this and really would like to try some diet changes etc. Has anyone had a food emptying study done? Anyone else small in stature at this age? Any help or advice is most appreciated. 🙂 Can you tell I’m an overwhelmed mom?!
Hello! I also have Collagenous Gastritis and have had it since 2010. I was actually one of the first cases, so I’m so glad I found this discussion!! I’m actually dealing with a lot of autoimmune conditions that seem to be associated, including Hashimoto’s and hives all over my body. Has anyone else experienced this?
Hello @kaliwebster, welcome to Connect. We are also glad you found this discussion. You mentioned that you were one of the first cases, if you feel comfortable, would you mind sharing with the group a bit more about that? It sounds very interesting!
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