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How do I start up a Celiac Support Group?

Posted by sonia

My 13 year old daughter was recently diagnosed with Celiac Disease.  We currently do not have any support groups in our area, for our previous one has dissolved.  I feel the real need to restart one, but I do not know how and what steps to take.  I have never been to a support group before and I really don't even know how they are run.  Our family has had great difficulty getting used to the lifestyle and I have had no-one to talk to.  Thanks! 
Answers (3)
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Hi Sonia,

There are lots of options. Can you tell me what part of the country you live in? I would love to put you in touch with some of the best support group leaders so they can share their experiences with you. Starting a group takes a tremendous amount of work, but it is incredibly fulfilling and provides an amazing resource to the community. 

 Look forward to hearing back!

Hi Vanessa,

I live in Strasburg, Virginia.  I am so ready to start up a group, for I deffinately believe that our community needs a support group. 

Thank you,


Hi Lucy,

So far, it has been a challenge with school meals.  I pack my daughters meals for lunch.  So far, we have only been doing pretty much snack foods.  I would try to make her something warm, but by the time that her lunch period came around, even in a thermous, it would be cool.  She wouldn't eat it.  I have even spoken to the school about allowing her to warm up her food, but because lunch breaks are so short, she would lose half of her lunch break by warming up her food.  So, we are still trying to figure that part out.

I am very much interested in starting up a support group; Not only would it benefit our family with getting a better understanding of this disease, but it would also help others who are dealing with this.  We really had no-one to talk to.  So, I am very thankful for individuals like yourself of whom are interested in helping. 

I believe that what I will do is to go to the different Gastrointestinal dr's in the area and post a flyer looking for those who may be interested in joining a group.  I will also contact our local newspaper to run a small article on this.  Not only will we hopefully get some interested people, but we can also inform the public on this growing problem.  I will also post a flyer at our local Health Food store, one of which carries gluten-free foods.

I really appreciate your help.  Please wish me luck with getting this started.  Thank you!


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