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Starting A Local Celiac Kids Support Group - Should I Do This?


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#1 ImaMiriam

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Posted 16 June 2013 - 02:21 AM

Hi Parents!

 

A friend suggested I start a local Celiac Kids Support Group - should I do this? The idea would be to start it using the "meetup" online site, and find a place to meet. I checked the local library, which does allow groups to use a room, BUT requires insurance. It sounds too complicated to do that, so I'm thinking about finding a different place to meet.

 

My daughter is 11 years old and diagnosed in April, and we have been gluten-free since mid-April as well. I feel it would be nice to find some Celiac friends for her, although she's coping really well with the gluten-free diet so far.

 

I searched around my local area and so far have not found any active children's groups near enough to our home. I'd rather join a pre-existing group, so will continue to search!

 

I haven't decided if I should start a group, and in many ways am not sure if it would be helpful. If anyone has done this, and has any suggestions or advice, please let me know. :-)

 


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Me: various symptoms such as eczema throughout my life; HLA-DQ2 gene

Daughter: positive blood test and HLA-DQ2 gene; no biopsy. Gaining weight and grew taller since gluten-free; had been same weight for 2 years.

gluten-free since May 1

 

Most folks are just about as happy as they make up their minds to be. Abraham Lincoln

Man must evolve for all human conflict a method which rejects revenge, aggression and retaliation. The foundation of such a method is love. Martin Luther King, jr.

Humankind will not perish for want of information; but only for want of appreciation. Abraham Joshua Heschel

Neither a lofty degree of intelligence nor imagination nor both together go to the making of genius. Love, love, love, that is the soul of genius. Wolfgang Amadeus Mozart


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#2 kareng

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Posted 16 June 2013 - 05:40 AM

Do you have a Celiac Support group in your area?  It might be best to start a kids group as an off-shoot of the established group.  Our group allows kids and has had some kid things in the past


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#3 ImaMiriam

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Posted 23 July 2013 - 02:55 AM

Do you have a Celiac Support group in your area?  It might be best to start a kids group as an off-shoot of the established group.  Our group allows kids and has had some kid things in the past

Thanks for writing back. It's been so busy, I have to keep looking, but so far, the closest support group is more than an hour away. I think that in September I'll have a little more time to research this.


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Me: various symptoms such as eczema throughout my life; HLA-DQ2 gene

Daughter: positive blood test and HLA-DQ2 gene; no biopsy. Gaining weight and grew taller since gluten-free; had been same weight for 2 years.

gluten-free since May 1

 

Most folks are just about as happy as they make up their minds to be. Abraham Lincoln

Man must evolve for all human conflict a method which rejects revenge, aggression and retaliation. The foundation of such a method is love. Martin Luther King, jr.

Humankind will not perish for want of information; but only for want of appreciation. Abraham Joshua Heschel

Neither a lofty degree of intelligence nor imagination nor both together go to the making of genius. Love, love, love, that is the soul of genius. Wolfgang Amadeus Mozart


#4 StephanieL

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Posted 23 July 2013 - 06:16 AM

Have you checked to see if ROCK has a group in your area? No use in reinventing the wheel if they have one. If not, it's a great group to get involved with and start a chapter in your area!

Good luck!!


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#5 stanleymonkey

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Posted 23 July 2013 - 06:53 AM

I was looking into starting a support group for kids in our city, the adult group meets once a month. I tried talking to the leader, but when I mentioned our kids weren't given a formal diagnosis but we were told to assume celac and forget the rest of the testing as gluten made them so horrifically ill, her attitude changed from helpful to nasty.
It's a shame as a local kids group would go down well as we are in a very family friendly city. I found the same issue with licenses for health safety, f you want to serve food.
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