Collagenous Gastritis

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

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.

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.

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, my daughter was diagnosed with CG when she was 12 years old. I know PPIs are not for long term use, but a little dose of 10 mg of Omeprazole has really helped her. She is 21 years old finishing college for nursing. She had a not-so-common symptom of hematemesis (stomach bleeds) which at times put her in the hospital requiring transfusions so she is on another drug for that called Lanreotide (Sandostatin) which is a monthly shot. However, she is trying to wean herself off of it spacing out the shots every 2 months. So far she has not had an issue (she does get warning signs). Sorry, your pain is so frequently. I think the PPIs have eliminated the pain for my daughter and she may have to be on it for the rest of her life. I've read to supplement with certain vitamins and minerals as PPIs prevent the absorption of certain nutrition. I believe it's B12, can't remember the rest, you can look it up, but she does take supplements. Hopes and prayers to all with this very frustrating condition. One. more thing, she gets car sick easily, so I used to let her sit up front (she's grown and has her own car now, but when she does ride with us I try to drive gently around curves, not stop abruptly. Hope this helps.

Hi, i just saw this post, and i also have collageneous gastritis. Was diagnosed about 3 years ago after a second bout of vomiting blood, the last ultimately resulting in blood transfusions after complications from an endoscopy. At least at this
point I'm fortunate in that i feel well most of the time. I've found that eating a very
"clean" unprocessed diet helps tremendously, alcohol seems to make it worse. I take proxtonix, often every day, but when I'm eating very well i often don't need meds. If you'd like to speak further please message me. I've never met anyone else with this diagnosis and I'm glad to hear there are doctors known to work with this diagnosis since my GI hasn't seen it before. Thanks for posting.

Thank you, Anthony. Our health crisis has strengthened our faith and magnified our prayer lives. There are so many diseases out there with no known cause or cure. I stayed by my daughter's side all the times she spent in the hospital between the ages of 12 - 14, praying and researching, working with some of the best physicians in the country. I learned a few things. 1) This was for my daughter's good -- because of CG, God put on her heart to become a medical person, now she's a senior nursing student with a 4.0 GPA with compassion for patients only a former patient could have, she may go on to become a nurse practitioner! 2) I saw children in the pediatric ward that would make your heart break, one with parents who turned parenting over to grandma and the nurses, never visiting their child. I also saw people of faith experience miracles only God could perform, blowing their doctor's minds. 3) God took care of me, too, sending the right people to comfort and educate me, even helped me find the best coffee in the hospital! My daughter is not out of the woods yet, but I know Who has her back, and over 500 miles away, I'm comforted that He transcends time and distance. God bless you, too!