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Hi, Here is my story. My daughter now 12 was diagnosed in October 2017. A year after a emergency blood transfusion in Dec 2016. She is on 120mgomeprazole & iron since then. She is now gluten free and we find that helps. She has low bone density. History of family auto -immune alapecia, hasimotos. I was ill during pregnancy and she was admitted to hospital with cellulitis age 6 (suggested link to strep and strong antibiotics) and again with influenza A 5 years ago, a series of injuries, knee, ankle, neck, finger, hand. Lives with pain very well, is an inspiration. I just wish we knew more and there was an alternative to omeprazole with Osteoporosis risk. what is the cause and how can we help. lost for step to take to help her and the unknown of her future health worries us both. I am reading all posts and compiling info, on symptoms, medicine (live in Australia - originally Scottish - unsure if medication and treatment available in US also on offer here) and any links. Has anyone else done similar how can we share and learn in a better organised way than one bug long chat stream. Keen to support, learn and share. Sending happy thoughts. We were relieved it wasn't chrons and had prepared ourselves for this worst, so happy i have a 12 year old started high school, outwardly happy and healthy.
Replies to "Hi, Here is my story. My daughter now 12 was diagnosed in October 2017. A year..."
This has been a very informative discussion thanks Colleen, John and jjdenaro.
There are some, for various reasons, that do not wish to become members of Facebook. Those sufferers would miss out on all info on CG Facebook page plus page would miss out on their input. Could separate what few CG sufferers there are.
I like anonymity of Mayo Connect. It does concern me that with so few of us with rare disease makes it easier to be identified.
Rather than a Facebook page I would like to see an International Registry for CG set up. A Registry where once CG positively diagnosed by Gastroenterologist the information is sent to Registry.
Any thoughts on this.
Would this be worth asking Mayo Gastro’s (Dr Joe Murray) their thoughts on this.
No - thank you for sharing, you very quickly loose any embarrassment or squeamishness supporting daughter with GC. It is hard to know what to do for the best for her.
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Mindi, Jamilynne and everyone else following this discussion.
Many members use both Facebook and Connect. Our philosophy here at Mayo Clinic is that we should help people get help where and how they want it. That is Facebook for some people. Others won't go near Facebook. What I appreciate is the cross pollination that happens between platforms, including other communities like Inspire or Smart Patients.
When people belong to more than one, they can share that information from one community to another. @johnbishop and several other Connect members do this with the information they learn elsewhere. Likewise, people bring information they learn from the Connect community to their other networks, be it on Facebook or an in person support group etc.
I'd like to also address your comments about finding it difficult to follow discussions on Connect. Many of you have not set your notification preferences to tailor what emails you get and to help see only the information that matters to you. I suggest that you:
1. Follow the Digestive Health group. https://connect.mayoclinic.org/group/digestive-gastrointestinal-problems/
2. Follow the Gastroenterology & GI Surgery Page for blog posts from Mayo Clinic experts https://connect.mayoclinic.org/page/gastroenterology-and-gi-surgery/
See more ways that you make Connect work for you https://connect.mayoclinic.org/get-started-on-connect/
A couple of things to note that Connect offers:
- anonymity: for some people it is very important that they don't have to use their real name
- monitoring: we have a team of people who monitor Connect to keep it safe from spam,abuse and misleading or incorrect medical information. Read more on why and how we moderate https://connect.mayoclinic.org/about-our-moderators-and-mentors/
- information from Mayo Clinic experts on Pages (https://connect.mayoclinic.org/pages/) and through live Video Q&As (https://connect.mayoclinic.org/webinars/)
I strongly encourage participation in any and all online communities that help you, and hope that you'll also help with cross pollination of the things you learn, like new research, treatments, coping strategies and more. I like to call these Connect members our worker bees 🙂 If you participate in other online communities, I hope you'll consider being a worker bee.