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Websites About Kids With Celiac

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Can anyone recommend good websites that provide info/support on kids who are celiac?

thanks

This is a good site. We have lots of moms with Celiac kids and they are very willing to share their time and experience.

Here is information about R.O.C.K. (Raising Our Celiac Kids):

https://www.celiac.com/articles/563/1/ROCK-...roup/Page1.html

Danna Korn founded R.O.C.K. in 1991 after her son, Tyler, was diagnosed with celiac disease. It has grown to international proportions, helping families all over the world deal with the unique challenges of raising a child on a gluten-free diet. When children are diagnosed with celiac disease at an early age, they usually have a severe intolerance to gluten, and are often extremely sick when ultimately diagnosed. Most parents share horror stories of visiting several doctors before finally arriving at a diagnosis, and are frustrated, exasperated, and angry, yet relieved to finally have a direction in which to turn. Sometimes it helps to talk about it, and it always helps to have some guidance when initially diving into the gluten-free diet.

Raising Our Celiac Kids is a support group for parents, families and friends of kids with celiac disease or gluten intolerance. We welcome families of autistic kids involved in a gluten-free/casein-free dietary intervention program. We concentrate on dealing with the unique challenges that we have, including:

Finding "fun" gluten-free treats for kids

Menu ideas for school lunches, quick dinners, and sports snacks

Helping the kids to take responsibility for reading labels, cooking and planning/preparing food

How to prepare for unexpected birthday parties and food-oriented activities at school, church, and elsewhere

Halloween, Easter, and other special days - how do we include our kids safely?

Educating day-care providers and teachers - without burdening them

Dealing with grandparents, babysitters, and "helpful" friends who offer gluten-containing foods to our kids

Ensuring our kids won't cheat, and what to do WHEN they do

Sending kids away to camp, friends' houses, and other times when we're not around to help

The psychological impact of growing up with celiac disease (peer pressure, teenage years, and more)

What do R.O.C.K. chapters do?

R.O.C.K. chapters have R.O.C.K. parties! How often you meet will be up to you and your chapter members, but we suggest meeting every two months to start; you can judge from that point whether you'd like to meet more or less often. We'd like to eventually have a chat room, where local chapters can talk to each other or with other chapter members. (In the meantime, people can chat at http://groups.yahoo.com/group/CeliacKids).

What goes on at a R.O.C.K. party?

R.O.C.K. parties are for the kids and the adults. The kids enjoy gluten-free food and play, while the parents exchange new-product information, questions and concerns, and anything that they feel is pertinent. You may invite speakers (child psychologists, pediatricians, pediatric gastroenterologists, dietitians), and even provide entertainment (clowns, face painters, toys) for the kids. Remember your community centers - they often have teenagers who will entertain the kids - for free!

Remember, you may have just a few families at first, but "build it and they will come" - keep it in mind!

Should I start a R.O.C.K. chapter or do something on my own?

I don't personally profit from any R.O.C.K. activities, so it doesn't benefit me either way. My vision for R.O.C.K. is to provide accurate, supportive information to families of gluten-free kids to make their lives easier and their kids' lives more enjoyable. The more cohesive we are, the more credible we are to new members, vendors, and the gluten-free community as a whole. If you decide to pursue a group on your own, I sincerely wish you the best of luck and hope you'll ask me for help in setting up your group if you need it.

If there isn't a R.O.C.K. chapter in your area yet and you're interested in starting one,

please contact Danna Korn at danna@celiackids.com.

R.O.C.K. Chapters in the United States


Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

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Can anyone recommend good websites that provide info/support on kids who are celiac?

thanks

This is where I came . . . and this is where I stayed. Is there anything in particular that you need help with?


Janet

Experience is what you get when you didn't get what you wanted.

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