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Anyone Have Experience With R.o.c.k Groups?

CantEvenEatRice

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CantEvenEatRice Enthusiast
CantEvenEatRice
Posted

Has anyone had their children involved with the Celiac R.O.C.K. support groups? I have an almost 2 year old and was thinking about getting involved with the local group in our area (We live in Northern Virginia so I think the closest group is Ashburn, Va). What are these groups like? Do you have to have an "official" diagnosis of Celiac? My son tested positive through Enterolab and had a positive dietary response but he does not have an official medical diagnosis. I have Celiac myself so it would be nice to get us both involved. Thanks!

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Juliet Newbie
Juliet
Posted

The ROCK group event I went to in Southern California was aimed for a little older kids than my son (he was 2 at the time, now 3). There was one couple who had a younger child than mine, but most were all over 6. Everyone brought food and let the kids play and eat. There was another event held once at P.F. Chang's, but we didn't attend since it's not quite as much fun for a 2 year old (he'd much rather run around than sit at a table, eat, and talk to adults or much older children). I think we'll get more involved again when he gets to school age, but right now it's not as useful as going to the CDF (Celiac Disease Foundation) support group meetings. I learn quite a bit more about food, latest research, even how to deal with quick meals in the evenings or having special snacks on hand for unexpected birthday parties (freeze gluten-free cupcakes and pull them out when an event comes up). But I did like Dana Korn's book "Kids with Celiac Disease" (she's the person who started ROCK). And I also get quite a bit of info from the magazine "Living Without."

As for diagnosis, my son does have an official diagnosis, but it was not necessary for attending the ROCK event nor the CDF meetings. In fact, at the CDF meetings, there are several people who do not have an official diagnosis but are gluten free anyway. A couple of them even stumbled on the disease on their own, tried the diet, then realized that it helped them tremendously. So no doctor has been involved in the diagnosis.

CantEvenEatRice Enthusiast
CantEvenEatRice
Posted
  • Author
The ROCK group event I went to in Southern California was aimed for a little older kids than my son (he was 2 at the time, now 3). There was one couple who had a younger child than mine, but most were all over 6. Everyone brought food and let the kids play and eat. There was another event held once at P.F. Chang's, but we didn't attend since it's not quite as much fun for a 2 year old (he'd much rather run around than sit at a table, eat, and talk to adults or much older children). I think we'll get more involved again when he gets to school age, but right now it's not as useful as going to the CDF (Celiac Disease Foundation) support group meetings. I learn quite a bit more about food, latest research, even how to deal with quick meals in the evenings or having special snacks on hand for unexpected birthday parties (freeze gluten-free cupcakes and pull them out when an event comes up). But I did like Dana Korn's book "Kids with Celiac Disease" (she's the person who started ROCK). And I also get quite a bit of info from the magazine "Living Without."

As for diagnosis, my son does have an official diagnosis, but it was not necessary for attending the ROCK event nor the CDF meetings. In fact, at the CDF meetings, there are several people who do not have an official diagnosis but are gluten free anyway. A couple of them even stumbled on the disease on their own, tried the diet, then realized that it helped them tremendously. So no doctor has been involved in the diagnosis.

Thank you so much!

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