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Anyone Here Rock Leader Or Been To A Rock Event?

cruelshoes

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cruelshoes Enthusiast
cruelshoes
Posted

My son is 8.5. He has adjusted well to the diet since being diagnosed 1.5 years ago. Still, I would love it if he could meet some other kids with celiac. All the ROCK groups in the state are quite a distance from us, so I am considering starting my own group. Are any of you ROCK leaders, or have you ever been to a ROCK event? Did you and your child find them enjoyable? What kind of activities did you do? Would you say that it has been a positive experience for your child?

I am not sure if I am ready to commit to starting my own group. If you are a ROCK leader, would you tell me what your time commitment is? WIth working full time and trying to keep up with 3 kids, I am already pretty crazy.

Thanks for any opinions!

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flagbabyds Collaborator
flagbabyds
Posted

Our ROCK group started off as my friend leading it and planning the events, (she was 11 at the time) and then she moved to Tahoe so we had various people tale over it. We had one really great woman running it and planning the events, but then she died unexpectadly sooooooo my mom ran it for a while, but i got too old for it, so i started the TAG (teens against gluten) national support group that branched off of ROCK.

Our normal rock meetings were usually picnics at different parks in the area, everyone would bring a dish and we would have soccer balls and footballs and the kids would play and eat while the parents talked.

Now our ROCK group is much more of an online community, it's a Yahoo group and most of the contact is through e-mail and we haven't had many meetings, especially since i stopped being an active member in the group/

It shouldn't take that much time, if you create a Yahoo group or some other website group, then all the members can message each other back and forth, and that helps.

celiac-mommy Collaborator
celiac-mommy
Posted
My son is 8.5. He has adjusted well to the diet since being diagnosed 1.5 years ago. Still, I would love it if he could meet some other kids with celiac. All the ROCK groups in the state are quite a distance from us, so I am considering starting my own group. Are any of you ROCK leaders, or have you ever been to a ROCK event? Did you and your child find them enjoyable? What kind of activities did you do? Would you say that it has been a positive experience for your child?

I am not sure if I am ready to commit to starting my own group. If you are a ROCK leader, would you tell me what your time commitment is? WIth working full time and trying to keep up with 3 kids, I am already pretty crazy.

Thanks for any opinions!

If you want to send me an personal message with your contact info, I can pass it along to our ROCK leader here in Vancouver (WA), I know she was very involved with the ROCK group in Seattle before they moved down here, she would be a great resource for you.

-Rachelle

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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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      Food and environmental allergies involve IgE antibodies.  IgE antibodies provoke histamine release from mast cells.   Celiac disease is not always visible to the naked eye during endoscopy.  Much of the damage is microscopic and patchy or out of reach of the scope.  Did they take any biopsies of your small intestine for a pathologist to examine?  Were you given a Marsh score? Why do you say you "don't have intestinal damage to correlate with lifelong undiagnosed celiac disease"?   Just curious.  
    • rei.b
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      By rei.b · Posted

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