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

Posted by jmn @jmn, Jan 5, 2020

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.

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adubbs79 | @adubbs79 | Apr 6, 2020

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

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 - 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

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.

oakbourne | @oakbourne | May 31, 2020

I have Microscopic Colitis and Silent Celiac Disease. I've had Silent Celiac Disease since an infant and nobody knew. No diarrhea, just extreme abdominal bloating, pain, brain fog and fatigue. I see it plainly and clearly in my baby photos. I'll be honest, I don't know if Celiac Disease is autoimmune or not. Now I have this darn autoimmune disease - Microscopic Colitis. Doctors, GI specialists don't have a clue how to treat this stuff. Plus I don't trust them. Not in my area of the woods. I contacted Wayne Persky's site - Microscopic Colitis, and it's been a God Send. I take only a few Pepto Bismol tablets and Cholestyramine. It's an old cholesterol medication that stops the non-stop diarrhea. Plus it helps with my cholesterol. Double Bonus! Yea! Eating is the Key. I basically eat a caveman's diet.You need to find out what's making your life hell. I had it so bad where I was having diarrhea about 25 times per day. I lived on the toilet.Couldn't leave home.

GET YOUR STOOL TESTED! I used Dr. Fine's Enterolab. I found out what I could eat - what I couldn't eat. It saved me. Eating out is a problem. I have found only two restaurants I trust. Just the other day, I was starving.Stopped at a restaurant I didn't know. I told the waitress NO SOY! All I had was scallops and they were soaked in Soy Sauce. You can't smell Soy Sauce. It looks like olive oil, I can digest. They gave me scallops soaked in Soy Sauce. I was in Big Trouble.Diarrhea for days!

Eating out is a NO NO. No gluten, no soy, no legumes, no dairy, nothing sharp to digest, no citric acid fruit or histamine containing foods. The list is long. I am sticking to my diet because my gut has to heal.I have a double whammy - Celiac and Microscopic Colitis. Plus I check food ingredient lists. The food manufacturers have a lobby group to protect them.What does that tell you? They are putting stuff in our food that is killing us.Since when did the government care? Maybe back in the 1950s.I don't know. I don't trust them one iota. To be safe, it would be best if we grew our own food and slaughtered our animals for protein, because we don' know what the food manufacturers are putting into our food. Have you seen the increase in cancer, dementia and Alzheimer disease? It's on the rise and I blame it on the food we are eating. Burger King puts out Whoppers that could feed a large family. No wonder people are FAT! FOOD is the ENEMY! Plus you don't know what's in the meat!

The whole idea of eating out has become dangerous! We need to get back to basics and grow and slaughter our own food. People were healthier back in the day because they knew what they were eating. Healthy food.Now we are plagued with diseases that are killing us.So the next time you go grocery shopping, check the ingredients. If you see a word you don't know, don't buy the food. Buying Organic is not the answer. The food manufacturers are putting crap in Organic Foods too! To be safe, eat at home and watch closely what you buy. Check ingredients.

Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | May 31, 2020

@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.

oakbourne | @oakbourne | Jun 1, 2020

In reply to @astaingegerdm "@oakbourne - You have a double Whammy- 2 autoimmune diseases! Sorry you had celiac growing up...." + (show)

Thanks for your response. No, the silent Celiac Disease did not stunt my growth. I grew like a weed till I turned fourteen. I was always feeling sick. Some days were good and some not good. My brain would work one day and not work the next. I had no idea what was wrong with me.Plus the histamine foods. I would get a runny nose and congestion. I have Scandinavian blood in my veins too. Quite a few ancestors from Norway and Denmark. A few from Sweden. Ahh, to be Swedish! Lucky you! The girls are beautiful in Sweden.My husband and I just stared at the girls. They're gorgeous! Plus the guys are handsome too. Good looking people for sure.

I refuse to take medication. Drugs have side effects so I take minimal medications. Prednisone and all it's side effects will destroy your bones and you can develop cataracts. Every drug has a side effect. Prednisone is a horrible drug that doctors give out like candy but won't give it to their own children. I think diet is the key! It is for me!

prath | @prath | Jul 17, 2020

Hi , my 18 year old daughter has recently been diagnosed with collagenous gastritis after she had a severe bleeding and was rushed to the hospital and had transfusion and the ulcer was clipped. She had a similar episode about 2 years ago when she was 16 and was on somac for a year . I am keen to get any advice on teenagers or young adults who have experienced similar issues what treatment they are currently going through.