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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
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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