Collagenous Gastritis: What treatment(s) work for you?

Posted by jmn @jmn, Jan 5 1:12pm

I have been diagnosed in July ‘19 with Collagenous Gastritis. My second endoscopy in November reconfirmed the diagnosis. Initially, steroids specific for the gut and Protonix was prescribed. Now I am on Protonix. Due to the rarity of this disease, there is not a standardized protocol for treatment. My GI doctor suggested I receive a second opinion for treatment. Good luck finding a facility who specializes in CG. I was wondering, is there another patient out there with treatment modalities that have worked for them besides Protonix and a gluten free diet? Thanks.

Hi @jmn, welcome to Connect. You'll find many members, like @astaingegerdm @oakbourne @motherkat @mindi @adri55 @kaliwebster @epvb and @emewood talking about CG in this discussion:

– Collagenous Gastritis https://connect.mayoclinic.org/discussion/collagenous-gastritis/

Jmn, while we wait for others to join in, can you share how you're treatment protocol of Protonix and a gluten free diet is working for you? Have you tried other treatments?

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My only help has been with the Miscroscopic Colitis Support group. Diet is the only answer.

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I only have experience with Collagenous Colitis. I was treated with immunosuppressive medication for a month. This was my first episode of autoimmune colitis. Future biopsies did not show collagenous colitis but nonspecific inflammation. Finally clear with more immunosuppressive treatment. As I understand it, collagenous gastritis is different and tough to treat.

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Yes, CG is a bit different than C Colitis yet the same treatments are the protocol. The first challenge was being able to eat. I got down to 103 pounds. Now I have gained weight to 113. There is no cure for Collagenous Gastritis. I was so malnourished since my stomach was not absorbing nutrients of the small amounts I could eat. I have developed Osteoporosis as a result. The Protonix concerns me regarding life long use possible resulting in the side effect of bone fractures. It is like on disease creates another. For now, I am simply thankful that I can eat. I appreciate your support and reaching out. May I ask what immunosuppressive medication was prescribed for you? Thank you

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@jmn

Yes, CG is a bit different than C Colitis yet the same treatments are the protocol. The first challenge was being able to eat. I got down to 103 pounds. Now I have gained weight to 113. There is no cure for Collagenous Gastritis. I was so malnourished since my stomach was not absorbing nutrients of the small amounts I could eat. I have developed Osteoporosis as a result. The Protonix concerns me regarding life long use possible resulting in the side effect of bone fractures. It is like on disease creates another. For now, I am simply thankful that I can eat. I appreciate your support and reaching out. May I ask what immunosuppressive medication was prescribed for you? Thank you

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@jmnm – for the collagenous colitis I was treated with methotrexate. Later on, when I had chronic gastrointestinal inflammation of entire GI system- not everything, but patchy inflammation occurring in “waves”, I was treated with Imuran for several months. Nothing since then. Hope it doesn’t come back!

Liked by kidsmomof9

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@astaingegerdm: Yes, I hope for your continued health. Thank you for the medication name. For me, it remains one day at a time. Keep a positive outlook as our minds do directly influence our bodies not as causes but as exacerbates.

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@jmn – It is hard to keep a positive attitude when your insides are at war with you. With the colitis I could still eat- if I had an appetite- I just got very dehydrated at times before treatment.
With osteoporosis you probably can’t take oral meds- there is always the infusions.

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@astaingegerdm: Yes indeed difficult keeping positive in the midst of the physical agony. Been there too. Yet, I try. Treatment for osteoporosis to be determined. Doctor is testing my 24 hour urine to check my kidney functionality to determine meds. I agree with your suggestion of infusions. Thanks for your educated information. Much appreciated.

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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!

Liked by kidsmomof9

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@adubbs79

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!

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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?

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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.

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@oakbourne

My only help has been with the Miscroscopic Colitis Support group. Diet is the only answer.

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

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@adubbs79

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!

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.

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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..

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@astaingegerdm

@jmnm – for the collagenous colitis I was treated with methotrexate. Later on, when I had chronic gastrointestinal inflammation of entire GI system- not everything, but patchy inflammation occurring in “waves”, I was treated with Imuran for several months. Nothing since then. Hope it doesn’t come back!

Jump to this post

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

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