Collagenous Gastritis

@jmnm - for the collagenous colitis I was treated with methotrexate. Later on, when I had chronic gastrointestinal inflammation of entire GI system- not everything, but patchy inflammation occurring in “waves”, I was treated with Imuran for several months. Nothing since then. Hope it doesn’t come back!

@astaingegerdm: Yes, I hope for your continued health. Thank you for the medication name. For me, it remains one day at a time. Keep a positive outlook as our minds do directly influence our bodies not as causes but as exacerbates.

@jmn - It is hard to keep a positive attitude when your insides are at war with you. With the colitis I could still eat- if I had an appetite- I just got very dehydrated at times before treatment.
With osteoporosis you probably can’t take oral meds- there is always the infusions.

@astaingegerdm: Yes indeed difficult keeping positive in the midst of the physical agony. Been there too. Yet, I try. Treatment for osteoporosis to be determined. Doctor is testing my 24 hour urine to check my kidney functionality to determine meds. I agree with your suggestion of infusions. Thanks for your educated information. Much appreciated.

My daughter was recently diagnosed with CG. She is 15. The GI Dr we see admits she doesn't know anything about it. I ran across this site while investigating on the internet. I saw a YouTube video with Dr. Joseph Murray from the Mayo clinic and was hoping to get in touch with him about possibly adding my daughter to any research he may do. She has nobody to offer relief to her symptoms. No medicines. No diets. My wife, daughter and I have been simply doing trial and error with limited success. Can anyone help or advise? My daughter would also like to reach out to anyone (someone female and close in age) with the same illness. She has stated she feels all alone in this, despite her mother's and mine's best efforts to ease her pain. Thank you in advance.---Andrew

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?