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.

@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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