Collagenous Gastritis

Hello Andrew, Our daughter was diagnosed with CG just a bit over a year ago at 15 as well. Just the same as you, we watched the YouTube video with Dr. Joseph Murray, and then we called for an apt. shortly thereafter. We were told we were she couldn't see him, as he only takes adults. So, we went to the Mayo Clinic in Rochester, MN, and are very grateful & very please with Dr. Imad Absah, GI Pediatrics. She has been under his care for just over a year now, as well as her just top-notch, super caring, local doctor here in the Northwest- Dr. Raghu Varier- super thankful for him on her team as well. OR/WA

Our daughter's early symptoms when diagnosed by endoscopy (biopsies sent to pathology- cobblestoning in her stomach & multiply spots of active bleeding, in OR and Mayo Clinic, MN) were the following: waves or times of nearly constant nausea, extreme lethargy, vomiting- multiply times a day, severe stomach/abdomen pain, bouts of dizziness (turns out she also has POTS syndrome), and anemia-ferritin level 12.

Just one year out this month- her symptoms have dramatically improved with the use of budesonide 6 mg pm & omeprozole 20 mg pm & other supplements for her. We have been wanted to see how this year on these med's went and to share on this platform. We have found such loving, supportive families on this site. (A HUGE thank you to Frank for putting this site up for all of us.)

It would be awesome to connect our daughters. If you could personal message me, we can share contact info. - Wendy

Hi Andrew. My heart and prayers go out to you and your daughter. My daughter was diagnosed when she was 12 years old with a massive stomach bleed which happened six more times between the ages of 14 and 15, requiring multiple blood transfusions. She was put on the drug, Lanreotide (SANDOSTATIN)

which successfully stopped the bleeding. It's an injection given in the glutes every month. She is now a 20-year-old nursing student junior in college and doing well. She is experimenting with spacing out her injections every 8 weeks instead of 4 which bumps up my prayer life, but she feels it's something she needs to do. Looking back, the stress in her life (she is a perfectionist) seems to have played a role in her symptoms. She has given up gluten/wheat which also has seemed to help. She also takes 10 mg of Omeprazole every day, bumping up the dose if she experiences any pain. As far as alternatives, the homeopathic drug, Arnica Montana 30C, has works wonders when symptoms flare up, especially if she senses a bleed coming on. We are blessed that she gets warning signs like mid back pain and stomach pain unlike anything else. I've forwarded your plea for help to her, hopefully she'll have time to respond but she is really busy with school. Things I've done to help her 1) make her favorite comfort foods, white rice and chicken thighs (high fat to help her gain weight). Let her drive or sit in the front seat of the car as she tends to get motion sickness more easily than others, 3) Try to keep a positive peaceful atmosphere in the house, especially at mealtimes. 4) Do fun things, 5) last but not least, pray. Hope this helps. Emelia

One more thing ... there's a Facebook page for CG which offers a plethora of good information from parents and patients about what they've tried and what has helped. It has provided a great deal of hope to all with CG and parents alike.

Hello @mcash,

It has been a while since you last posted about your daughter's diagnosis of CG. I would love to hear from you and know how she is doing. Will you post again?

Sure, I guess no news is good news. She is now a junior in nursing college working on her bachelor's degree. She is doing very well, but as a mother, I think she is too thin, 5'7" about 103 lbs, but it doesn't slow her down. She's maintaining a 3.9 GPA and has a serious boyfriend. She is also trying to get off the Lanreotide shots by spacing out the doses. I'd prefer she do that when she's home in the summer but it's her decision. She tried to get off the "baby" dose of 10 mg Omeprazole but it caused her severe stomach pain, so she stays on that. I just pray for her every day. Thanks for asking. How is your daughter doing?

Thank you, Wendy, for quick response. I will be in touch with you on connecting our daughters. Its very comforting to have the support I see on this page.

Thank you very much for reaching out. Good to see your positive attitude in all the muck. That goes a long way, its the spirit that sustains us during sickness. I am learning alot from this connect site. I will be in touch and visit frequently to stay in the proverbial loop. Hope your daughter continues in her RN pathway with great success.

Thank you once again @emewood. Your devotion to your daughter’s health is respected. I appreciate your info about CG as I gain further insight into how to treat my CG at 60. Your examples of what to do/how to help are hands on. I totally agree with you regarding the stress factor. My CG flares up with stress as well as with certain acid foods. I keep telling myself to get into a yoga, meditation, tai chi class yet continue old patterns of putting that type of self care off which is so counterproductive. Time for working, family, then Mom. Your daughter sounds like a go getter and a dear soul, especially wanting to enter the nursing profession. God bless her. I pray that she maintains a balance between her schooling and calm, restful ways. Once a lifestyle pattern is set, it takes strong intervention to change. I hear how proud of her you are yet the concern of 500 miles away from you. Please make sure you too take care of your health and well-being. I sincerely admire you.

Hello, We are wondering what you have been doing since this post. If you could please let us know, we would be so appreciative! 🙂

Our 17 year old daughter has also been taking 6 mg Budesonide pm and 20 mg omeprazole am. We are just at the year mark for the regiment. At 6 month check and endoscopy, her symptoms were very much under control (no daily vomiting, less severe abdominal pain, etc), blood work was all in normal range (with daily supplements- iron, ferritin, and cortisol levels normal- Praise God!), but unfortunately her endoscopy showed almost no change with cobble-stoning of the stomach lining and multiple bleeding sites. Augh. So, we are at the 1 year mark and back to decision making time- medication changes, trying something besides steroids (very concerned for long term use and the implications on her health), etc. Look forward to hearing from you.