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.

@bandit

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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@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.

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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.

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@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.

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@astaingegerdm

@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.

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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!

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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.

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@prath

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.

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Hello @prath, welcome to Mayo Clinic Connect. As you can see, I moved your post to a recent active discussion about Collagenous Gastritis. You can click view and reply and it will take you here: https://connect.mayoclinic.org/discussion/collagenous-gastritis-4/ The benefit in doing so allows you to connect with members of the Connect community that share similar experiences to what your daughter is going through. I am sorry to hear about your daughter and the issues she is experiencing with collagenous gastritis after she had a severe bleeding and was rushed to the hospital and had transfusion and the ulcer was clipped. I have had many gastrointestinal issues over the years that led to hospital stays and I know how alarming it can be.

One of our mentors, @johnbishop, provided a reference that you might find helpful. Mayo Clinic Newsfeed – Collagenous Gastritis – Searching for Answers: https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/newsfeed-post/collagenous-gastritis-searching-for-answers/

You will find that there are several members currently discussing this issue like @bandit, @oakbourne, @asegura, @motherkat, @mindi, @adri55, @kaliwebster, and @astaingegerdm

Can you share with us anything that her doctor recommended for treatment?

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Hi Amanda, thank you for your reply and moving my post to the active discussion page. My daughter is currently booked in for an endoscope next week to take biopsy sample to try and find the cause of collagenous gastritis and also to find out whether this was the cause of the severe bleeding which they suspect is dilofuoy lesion. It would be good to hear from anyone who has experienced this . thank you

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Hi 👋 my daughter is now 15 (this month) was diagnosed 4 years ago with CG after an emergency blood transfusion (no sign of bleeding) and put on Omeprozole- we are in Sydney Australia. She is GF and now DF ( due to reactions) she has early on set osteo and we think due to medication or CG. Anyone else had similar? So hard being pushed around from specialist to specialist. I want her off this medication. But need a doctor to tell me she will be ok on something else or she won't develop more serious issue with the reflux / burn.

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Hello. Your daughter is so young to have CG but an increasing number of young people are being diagnosed. I have CG. I have been on Protonix for over a year now. The medication worked wonders as my case was rather severe due to excessive use of NSAIDS for migraines. It ate my poor stomach alive. I have read so many of the warnings of PPIs so I took myself off and used Pepcid instead for a few months. My condition deteriorated rapidly. I am now back on Protonix. I have also been diagnosed with Osteoporosis due to CG and the poor absorption of CA and minerals necessary for strong bones. So, yet another drug, an annual injection of Reclast since oral medications for osteoporosis are too harsh on the stomach. We are sort of stuck in a grind. I have tried licorice, slippery elm, and other herbs but they do not have the power necessary to combat the CG. Diet is truly an intervention- clean, fresh food, limited fats, no alcohol, no caffeine, no spicy foods…. you see the lists on the internet. They all help some but I have had to accept that this is how my life is now. There is no cure for this disease. Discipline is the center of handling CG in terms of stress management (yoga, deep breathing, meditation, prayer), Cognitive Behavioral therapy is essential to deal with the thoughts and behaviors that trigger exacerbation of CG. If an upsetting, stressful trigger occurs, sure enough, there she blows! Sleep for 8 hours a day. I think there is no one fix, no quick magic, it is a lifetime now of disciplined awareness on all levels to really get ahead of the disorder. I hope your daughter has been able to keep weight on. Small meals are the best any number of times a day or the pain can get unbearable. My heart simply goes out to your daughter. She is way too young for this but she must courageously embrace her life, her health, and her future. My very best to you, Jean

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@looloo

Hi 👋 my daughter is now 15 (this month) was diagnosed 4 years ago with CG after an emergency blood transfusion (no sign of bleeding) and put on Omeprozole- we are in Sydney Australia. She is GF and now DF ( due to reactions) she has early on set osteo and we think due to medication or CG. Anyone else had similar? So hard being pushed around from specialist to specialist. I want her off this medication. But need a doctor to tell me she will be ok on something else or she won't develop more serious issue with the reflux / burn.

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Hi looloo, We are in Sydney as well. Our daughter was at Royal North Shore when she had the severe GI bleed. They did an endoscope last week to take some biopsy. She is on Somac (omeprozole) at the moment . What symptoms does your daughter have, does she get regular reflux issues ? When you say she is GF and now DF, what does that mean as I am trying to understand the terminologies.

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@jmn

Hello. Your daughter is so young to have CG but an increasing number of young people are being diagnosed. I have CG. I have been on Protonix for over a year now. The medication worked wonders as my case was rather severe due to excessive use of NSAIDS for migraines. It ate my poor stomach alive. I have read so many of the warnings of PPIs so I took myself off and used Pepcid instead for a few months. My condition deteriorated rapidly. I am now back on Protonix. I have also been diagnosed with Osteoporosis due to CG and the poor absorption of CA and minerals necessary for strong bones. So, yet another drug, an annual injection of Reclast since oral medications for osteoporosis are too harsh on the stomach. We are sort of stuck in a grind. I have tried licorice, slippery elm, and other herbs but they do not have the power necessary to combat the CG. Diet is truly an intervention- clean, fresh food, limited fats, no alcohol, no caffeine, no spicy foods…. you see the lists on the internet. They all help some but I have had to accept that this is how my life is now. There is no cure for this disease. Discipline is the center of handling CG in terms of stress management (yoga, deep breathing, meditation, prayer), Cognitive Behavioral therapy is essential to deal with the thoughts and behaviors that trigger exacerbation of CG. If an upsetting, stressful trigger occurs, sure enough, there she blows! Sleep for 8 hours a day. I think there is no one fix, no quick magic, it is a lifetime now of disciplined awareness on all levels to really get ahead of the disorder. I hope your daughter has been able to keep weight on. Small meals are the best any number of times a day or the pain can get unbearable. My heart simply goes out to your daughter. She is way too young for this but she must courageously embrace her life, her health, and her future. My very best to you, Jean

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Hi Jean, thank you for your reply. When you say your symptoms got worse when you came off PPI, what symptoms did you have. With our daughter apart from the 2 severe bleeds in 2 years she has no other symptoms. She is currently on omeprazole and waiting on the results of biopsies.

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Hi Prath. The symptoms I have when my CG is exacerbated are severe pain in my stomach, the inability to eat or very painful when I eat. In this state, I can only eat very small “meals” which consist of very light foods that are easily digestible like cottage cheese, yogurt, soup. When I was first diagnosed, soup was my staple food. Also, many people improve with a gluten free diet. In terms of the biopsies, mine were oozing, white, ulcers that only upon the stained biopsy results could my GI doctor see the collagenous aspect. The collagen is a sort of self healing process which tries to save the inner lining of the stomach just as a callous would try to protect a highly utilized area of skin. The “callous” is what the problem is. Due to the thickness of the callous, the stomach does not absorb the nutrients as is should. Our food is not broken down well enough so hence nutrient absorption is minimized. It is not just the medication issue. Let me know how your daughter proceeds. Notice, females seem to be more frequent which I think is an interesting factor. I also believe that my personality style contributed to my CG. I am an intense person who takes life seriously, very responsible and determined. I see very bright young females who thrive to perfection in school showing up with CG.

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Hi Jean, thank you for the reply and understand more about the symptoms. My daughter does not have any pains when she eat. The only issues she has had is the 2 episodes of severe bleeding. We are now changing her diet to gluten free to see if this would make any difference and the specialist has advised that he may start her on a steroidal treatment.

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Yes, forgive me. I forgot to say, I had an initial 3 month dose of steroids. I do believe the steroids made a huge difference. I started at 9mg, to 6mg, then to 3mg over the 3 months. I am sensitive to steroids. It makes me irritable/agitated but others don’t have that response. I also had trouble sleeping due to the steroids. Your doctor is leading you in the right direction. Most doctors are replicating the treatment protocol for other GI disorders since there is no researched treatment for CG. We have less than 100 cases in America. I wonder why the rise in cases is occurring particularly among the young. I hope research starts soon. Keep in touch and let me know how your daughter is doing. As a Mom, you must be deeply affected by this too. Any time you want to talk, just let me know. Jean

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