Collagenous Gastritis

@oakbourne - You have a double Whammy- 2 autoimmune diseases! Sorry you had celiac growing up. Did it affect your growth? As far as I’m aware, children were not routinely tested for celiac until some years ago- adults too. In my home country Sweden celiac is much more common.

My colitis started 12/08. I also spent time not more than 5 feet from the bathroom. I got very dehydrated. I was diagnosed after a couple of months and given methotrexate for 4 weeks. Diarrhea stopped, but I continued with other symptoms. I was tested for everything at Mayo. Still some diffuse inflammation. Also given Cholestyramine. Budesonide worked best - actually Prednisone was a dream, but couldn’t take it long term. Peptobismol always helped me, still does.
By 2015 I felt sick all the time. I wanted to try Imuran- immunosuppressive. Took it for 7 moths and I was healed- however, it’s risky because I did develop several bacterial infections andbefote I stopped my blood count was low.
I still have to be careful eating out- mostly because I don’t tolerate fat.

I had microscopic colitis diagnosed about 2 years ago after a 7 month journey starting with a yersinia infection, treated with Bactrim that left a C-Diff infection and treatment for THAT, I had a colonoscopy that confirmed collagenous colitis. Budesonide was a miracle drug. I did a 9 week tapering course and went back to my life.
All was good until I had bilateral cataract surgery in April&May and was on a month long course of an ocular NSAID 4 times a day. But it’s eye drops! I know that ibuprofen is a trigger for me, as are PPIs. But my colitis relapsed and this time the Budesonide isn't working. Maybe it was the ocular eyedrops and maybe it was who knows what. But although a lot of pepto bismol capsules can give me enough relief to grocery shop or go to a Doctor appointment, it’s like having my finger in a dam.

I see my doc tomorrow to hear his thoughts. I have tapered off Budesonide so I can go in any treatment direction.

But I have an issue w/Budesonide in that it has stained my teeth really yellow. Has anyone else experienced that?? I saw my dentist today and they are calling drug manufacturer but she thinks it is intrinsic - like gray teeth from tetracycline.

This is the gift that just keeps giving. 🙄

I had an endoscopy/colonoscopy done on the 11th and my biopsy results came back negative for H. Pylori, but showed collagenous gastritis. Colonoscopy was clear, with no biopsies there. My symptoms are very odd in my opinion based off what I’ve read about this disease so far:

Adrenaline rush/heat rush/feeling of dread during or after eating
Panic attacks triggered by adrenaline rushes
Flare ups of epigastric/abdominal pain after eating
Heart palpitations
Extreme fatigue
Nausea/occasional vomiting
Unintended weight loss (132 down to 111 in a month)
Slow moving stool/frequent constipation
Severe neck and lower back (tailbone) pain
Dehydration
Fatty foods like steak and cheese trigger my adrenaline rushes/abdominal symptoms
Am able to eat bread with no symptoms
Talking to my PCP tomorrow about secondary testing for autoimmune diseases (my mother has Rheumatoid Arthritis but does not test positive on blood tests. I might have inherited this as I was tested for Celiac and Sjogren's - negative for both)

If anyone could give me some insight on how to manage this disease, I would really appreciate it. I’m scared for my health and I hate that this is so rare that I can’t find any of the answers I’m looking for. I know there are many who have had this with no answers for a number of years, I have dealt with the brunt of it since July and I feel scared all the time.
I am interested in any clinical trials current or upcoming as well if there are any.
Thank you for your time

Hello, Sorry to hear about your diagnosis. It’s really hard to know how to best treat CG I because of how rare it is. This has been my 22 year old daughter’s experience with CG for the past 9 years:
She initially had symptoms of vomiting, stomach pain, bloating, slow stomach emptying and constipation. Her symptoms were treated with sucralfate and omeprazole for many years with pretty good relief. She tried an immunosuppressant (forgot name) with no change in symptoms. Currently she is weaning herself off omeprazole because long term use can have its own set of problems. She is no longer on sucralfate either. She tries to eat small healthy meals with fruits and vegetables and to pay attention to some foods that make her symptoms worse. Stress also seems to be a factor, she tries to exercise as much as she is able. She is now on Magnesium supplement, takes Tums occasionally, food-based iron supplement also because of chronic anemia (food-based to avoid more constipation). She has had follow-up endoscopies and hasn’t seen much change in her stomach lining. Sometimes she has to take Smooth Move tea and Miralax if she is especially constipated. She was seen by a homeopathic doctor to get another perspective, but was only minimally helpful. Her symptoms seem to be stabilized for now, but does have good and bad days. She has learned to live with her condition, but has taken some time to accept it. I wish you well in your journey to learn more about CG, I’m thankful for hearing about others in this community and any info that might be useful or treatments that might make my daughter feel better.

Hello, my 15 year old son has just been diagnosed with collagenous gastritis by his private healthcare gastroenterologist here in Barcelona, Spain. She is referring him to the public healthcare system as she has no specialist experience in this area. He started with symptoms a year ago - extreme fatigue and some constipation, and subsequently had a blood transfusion due to significant anaemia. This is being controlled by iron tablets, and he has tested negative for crohns and celiac, but I am keen to understand his long term prognosis, and if there are any worldwide specialists (or those in Europe) that I can contact? I have read through the comments in this chat and I am very interested to know if support from a functional doctor or a dietary change has created any significant change for anyone. Appreciative of any advice you can give me! Thank you so much

Hi @luft80, welcome to Mayo Clinic Connect. It is difficult to watch your child deal with health issues especially when you do not know how to help them. He must be discouraged having needed a blood transfusion that does not necessarily fix his problem, not knowing where to look for help.

I am tagging @astaingegerdm, @epvb who created this discussion about collagenous gastritis and @tc4334 who mentions their daughter dealing with this same condition for over 10 years. They may have updates that will help.

This 2016 research information from Mayo Clinic is about budesonside that other members have commented about trying, “ TTB therapy produced clinical and histologic improvement after other therapy had failed.” One thing I like to check out is the names listed at the top of the document, learning more about the people who put this research together may provide more information for you: https://mayoclinic.elsevierpure.com/en/publications/collagenous-gastritis-characteristics-and-response-to-topical-bud

I do not have collagenous gastritis but I am familiar with Mayo Clinic in the US as a GI patient as well as other areas, and would highly recommend them. I worked with doctors local to me and did not make progress. Once I was evaluated at Mayo Clinic in Rochester I was told they knew what was happening with me but did not know what to do about it. They wanted to work with me to first, protect my heart and then take one symptom at a time. We have been doing this for several years. They tell me something to do, I do it, I incrementally improve. GI is a big part of my care. I would describe Mayo as conservative in their approach and aggressive to treat once they are confident. https://www.mayoclinic.org/about-mayo-clinic/quality/top-ranked
- Contact Mayo Clinic to discuss an appointment: http://mayocl.in/1mtmR63
- Then work with International Patient Services https://www.mayoclinic.org/departments-centers/international

Their location in London may be an option as well since you are in Spain.
- Mayo Clinic in London: https://www.mayoclinichealthcare.co.uk/

You mention a transfusion followed up with iron tablets is currently controlling your son’s CG. How is his day-to-day affected by all of this? How are you doing, mom?