Collagenous Gastritis

Posted by e @epvb, Mar 27, 2017

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

Interested in more discussions like this? Go to the Digestive Health Support Group.

Kanaaz Pereira, Connect Moderator | @kanaazpereira | Feb 18, 2020

In reply to @sogo747 "Hey there I got my diagnosis of CG today!!! Any advice tips, tricks?" + (show)

Welcome to Connect, @sogo747.
I’m confident that @mindi @jmn @medic03 @wendyt2018 @buckeyeliz and other fellow members will return to share their insights with you. In the meantime, I encourage you to view this video where Mayo Clinic gastroenterologist, Dr. Joseph Murray explains a few details about CG:
— https://www.youtube.com/watch?v=XY-0Fsv20sw

Could you share a bit more about yourself? How did you get diagnosed? Do you have to follow a special diet? I look forward to getting to know you better.

jmn | @jmn | Feb 18, 2020

In reply to @sogo747 "Hey there I got my diagnosis of CG today!!! Any advice tips, tricks?" + (show)

Hello and welcome to the group of CG! I recently posted a lengthy note to @galloway123 on 2/7. Perhaps take a peak at that post and contact me if you need more info.

adubbs79 | @adubbs79 | Apr 4, 2020

In reply to @jmn "I have been diagnosed in July ‘19 with Collagenous Gastritis. My second endoscopy in November reconfirmed..." + (show)

I had two stomach bleeds that required hospitalization, June of 17, on carafate and Protonic, then discontinued Carafate after a month and Protonic after 3 months showed ulcer healing. Then Dec of 18 second stomach ulcer requiring hospitalization. I've stayed on Protonic since then, 40mg. It was after around the 8th endoscopy in May of 19 that my diagnosis of CG came. Prednisone 40 mg for a month helped (June-Aug2019), but that's not sustainable long term. I tried; 6 major allergen food elimination diet, no coffee no alcohol no mint no acid diets, low fodmap, gluten free and dairy free for 6 months, Chinese Medicine/herbs and accupunture. With most of these I would have a temporary abatement of symptoms, typically for about a month, and would become very excited that "we had figured it out!" Only to come crashing back to reality after about a month being symptom free to the burning pit behind the sternum and occasional pit/rock/tightness in my stomach. Dietary changes had no change in endoscopy results for me, (that doesn't preclude those dietary modifications being helpful for others). Most recently (Jan-March 2020) I was on swallowed budesonide 2mg/15ml in a slurry. This needs to either come from a compounding pharmacy or you can do it on your own with multiple Splenda packets. 2 mg/day was the dosage. I preferred and was able to locate a local compounding pharmacy as I didn't want to invest 10 packets of Splenda a day every day. I was on the budesonide slurry for two months. During the time I was on it I was able to eat and drink whatever. So far so good, although I am only but a month being off the budesonide. Hopefully it will continue.
Both times for me being on a steroid, Prednisone first, then swallowed budesonide second, the amount of "active gastritis" on biopsies was reduced and my symptoms were significantly improve. Budesonide is a significantly safe drug as it's effects are localized to the GI system rather than Prednisone which has a significantly higher systemic effect. I hope that this is of help! Please feel free to reach out to me if you need clarification or more information! Stay safe, stay healthy, wash your hands and stay home everyone!

Colleen Young, Connect Director | @colleenyoung | Apr 6, 2020

In reply to @adubbs79 "I had two stomach bleeds that required hospitalization, June of 17, on carafate and Protonic, then..." + (show)

@adubbs79

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@adubbs79, thanks for joining Mayo Clinic Connect to share the treatment that works for you for Collagenous Gastritis. What you describe about making changes to diet would bring "a temporary abatement of symptoms, typically for about a month, and would become very excited that "we had figured it out!" Only to come crashing back to reality after about a month..." is an experience many here can relate to.

I found more information about budesonide slurries here:
https://www.eosinophilicesophagitishome.org/eosinophilic-esophagitis-treatment-overview/eoe_treatment_oral_viscous_budesonide/ Budesonide (Pulmicort) is an steroid medication that has been used to treat asthma. In recent years, it has also been used as an effective therapy to treat the eosinophilic inflammation in EoE. This type of therapy has been known as oral viscous budesonide (OVB) or a Pulmicort slurry."

May I ask what led to your getting budesonide prescribed? You've been on it for 3 months now?

adubbs79 | @adubbs79 | Apr 6, 2020

In reply to @jmn "I have been diagnosed in July ‘19 with Collagenous Gastritis. My second endoscopy in November reconfirmed..." + (show)

I had tried a course of Imuran back in Aug 2019 and had success for the first 3 weeks, then vomiting after taking the medication. My GI doc suggested that we try to budesonide as it was successful for EoE treatment and we could try to borrow treatments for similar diseases.
I took the budesonide for 2 months, I have been off of it for almost a month now with minimal return of symptoms. He mentioned that there is an effervescent tablet, however it is currently only available in Europe. That advantage of that is not having to refrigerate the budesonide slurry.

asegura | @asegura | Apr 8, 2020

In reply to @oakbourne "My only help has been with the Miscroscopic Colitis Support group. Diet is the only answer." + (show)

Would you please expand on what type of diet helped you with microscopic colitis? Many thanks.

Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Apr 8, 2020

In reply to @adubbs79 "I had two stomach bleeds that required hospitalization, June of 17, on carafate and Protonic, then..." + (show)

@adubbs79

Jump to this post

@adubbs79 - Thank you for your detailed history of your treatments! Very helpful. Even though collageneous gastritis and colitis are so different I found Budesonide was able to bring me to a tolerable level of discomfort. Imuran finally healed my insides, but side effects of several bacterial infections sucked the energy out of me. I hope you isolate yourself now- take no risks.

joanesposito | @joanesposito | Apr 14, 2020

In reply to @jmn "I have been diagnosed in July ‘19 with Collagenous Gastritis. My second endoscopy in November reconfirmed..." + (show)

So sorry you have this, i have reg gastritis, i just realized I was making it worse with lots of Lemon Juice, trying to do anti inflam diet .. I just saw for your condition, not much info to help, but i read steroids, Iron suppl and hypoallergenic diets.. I sure hope you find some relief. eat smaller meals and soups make me feel better. Best Wishes..

bandit | @bandit | May 30, 2020

In reply to @astaingegerdm "@jmnm - for the collagenous colitis I was treated with methotrexate. Later on, when I had..." + (show)

My husband has collagenous colitis and is on Budesonide. This helps, but he has alot of nausea. Does this go along with the CC?

Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | May 30, 2020

In reply to @bandit "My husband has collagenous colitis and is on Budesonide. This helps, but he has alot of..." + (show)

@bandit - I’m glad your husband gets relief with budesonide. The good thing is that it works mostly inside intestine and not causing other side effects. I know I had nausea on and off. For severe nausea I would take ondansetron- used with chemo nausea too. Was great. I would also take OTC meds and use nausea wristbands. There is a plastic button that puts pressure on a specific site on your wrist- like acupuncture. Maybe he could get a prescription for the nausea. It helped me a lot.