Jump to content

  • You are not alone. Join Celiac.com for trusted gluten-free answers and forum support.



  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

How To Start A Celiac's Support Group?

Gamer-Girl

Recommended Posts

Gamer-Girl Newbie
Gamer-Girl
Posted

I am currently living in Western Kentucky, and debating on starting a Celiac's Support Group. The local health food store carries a lot of gluten free food. I continue to give them ideas on what to stock and they always end up running out of it.

Problem is they don't want to start anything, but they said they'd donate food and they'd help advertise. So any ideas on how I could start this? I've got no friends who have Celiac's or who would want to get involved. So I'm starting from scratch.

Any ideas would be a big help!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


happygirl Collaborator
happygirl
Posted

Your best resources would be to talk to one of the national Celiac (Celiac, no 's') that have branches. They will be able to guide you.

www.gluten.net

www.celiac.org

www.csaceliacs.org

mamaw Community Regular
mamaw
Posted

Hi

That is wonderful that you want to help others. I started a support group in my area this past Feb. We meet monthly. Much to my surprise we have over 100 registered members. I did all the leg work on my own with my own money & continue today with only a donation basket. I research for hours daily to bring the most updated info & reliable. Not everything on the net is true so one needs to be a Sherlock Holmes at times to verify everything.

I did a newspaper article with another person & then a live radio talk show to get the word out. I had a room already offered at a local church. Our first meeting was a meet& greet with prizes, gluten-free of course for everyone. I had a vendor bring product & also had many samples from bakers/vendors. Each month i have samples ..... I try to have a guest speaker every few months.... After each topic we do a Q&A. We have a mission statement & a disclaimer.....

Some of our topics were beginning the lifestyle, what to eat & where to find it. Whats good whats not. Cross contact & cleaning up the kitchen. mainstream shopping. Product reviews. Buying as a group to cut down on costs. Picnics & light brunches in the evening! recipes sharing is another requested topic. Our group name is Gluten Free Cravings & we are liscensed. We are totally independent . There are many laws you must follow when you join CSA Or GIG. Our group is not just for celiacs but for nay one seeking help on the gluten-free lifestyle. This diet has helped so much with other health issues so the group is a unique group with all kinds of medical issues....

hth

mamaw

  • 1 month later...
Kit Newbie
Kit
Posted
I am currently living in Western Kentucky, and debating on starting a Celiac's Support Group. The local health food store carries a lot of gluten free food. I continue to give them ideas on what to stock and they always end up running out of it.

Problem is they don't want to start anything, but they said they'd donate food and they'd help advertise. So any ideas on how I could start this? I've got no friends who have Celiac's or who would want to get involved. So I'm starting from scratch.

Any ideas would be a big help!

One way of getting a group going is call your community outreach people at your nearest or biggest local hospital. They'll often post support group meetings in their mail-outs and online, and may be able to get you a room in which to meet.

Be sure to notifiy all the GIs in your area of your support group, giving them hand-outs, as needed.

As far as support groups go...I like GIG (gluten intolerance Group) Open Original Shared Link - over CSA, who has been stubborn, ineffectual and inflexible concerning outreach and education.

Good for you! and Good luck!

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. cristiana
      - cristiana replied to HelloFlowersGoodbyeFlour's topic in Related Issues & Disorders
      6

      Anyone else get a lot of upper respiratory infections?

      Definitely worth speaking to your gastroenterologist about this. My own told me that by using Gaviscon a barrier forms over the contents of the stomach and stops gas and acid irritating the throat. In fact, he said to me that because I found relief using Gaviscon that was a very clear indicator that reflux was the cause of that particular issue. A wedge...
    2. HelloFlowersGoodbyeFlour
      - HelloFlowersGoodbyeFlour replied to HelloFlowersGoodbyeFlour's topic in Related Issues & Disorders
      6

      Anyone else get a lot of upper respiratory infections?

      I did get the pneumonia vaccine about 4 years ago. I had this amazing allergist who did all those vitamin deficiencies test and told to get that vaccine. Unfortunately she retired. I haven’t been to an allergist in a few years, I’m not sure what my levels are now. I did have a pulmonologist who wasn’t concern and said I seemed fine to him that I was young...
    3. HelloFlowersGoodbyeFlour
      - HelloFlowersGoodbyeFlour replied to HelloFlowersGoodbyeFlour's topic in Related Issues & Disorders
      6

      Anyone else get a lot of upper respiratory infections?

      Yes I do have acid reflux. I’m not on anything for it at the moment. I sometimes wonder if that’s what it could be because I get heart burn every night. I may revisit my gastrointestinal doctor again. Thanks for the reply
    4. cristiana
      - cristiana replied to HelloFlowersGoodbyeFlour's topic in Related Issues & Disorders
      6

      Anyone else get a lot of upper respiratory infections?

      Hi @HelloFlowersGoodbyeFlour I wonder if you suffer from reflux, as if you do, you may find it could also be irritating your airways. I shall explain: I have to use a blue inhaler from time to time, and it seems to be related to reflux. Never had any trouble before my coeliac diagnosis, the reflux seemed to be something that developed following...
    5. trents
      - trents replied to HelloFlowersGoodbyeFlour's topic in Related Issues & Disorders
      6

      Anyone else get a lot of upper respiratory infections?

      Since initially getting your D checked a few years ago, has it since rebounded to normal levels? Sounds like at some point you got it checked again.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,125
    • Most Online (within 30 mins)
      10,442
    psasso76
    Newest Member
    psasso76
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • cristiana
      Anyone else get a lot of upper respiratory infections?

      By cristiana · Posted

      Definitely worth speaking to your gastroenterologist about this. My own told me that by using Gaviscon a barrier forms over the contents of the stomach and stops gas and acid irritating the throat.  In fact, he said to me that because I found relief using Gaviscon that was a very clear indicator that reflux was the cause of that particular issue.   A wedge pillow will really help with this - or raising the top bed legs with bricks.
    • HelloFlowersGoodbyeFlour
      Anyone else get a lot of upper respiratory infections?

      By HelloFlowersGoodbyeFlour · Posted

      I did get the pneumonia vaccine about 4 years ago. I had this amazing allergist who did all those vitamin deficiencies test and told to get that vaccine. Unfortunately she retired.  I haven’t been to an allergist in a few years,  I’m not sure what my levels are now. I did have a pulmonologist who wasn’t concern and said I seemed fine to him that I was young etc. But yes I think I should at the very least get a different opinion. Thank you for your reply 
    • HelloFlowersGoodbyeFlour
      Anyone else get a lot of upper respiratory infections?

      By HelloFlowersGoodbyeFlour · Posted

      Yes I do have acid reflux. I’m not on anything for it at the moment. I sometimes wonder if that’s what it could be because I get heart burn every night. I may revisit my gastrointestinal doctor again. Thanks for the reply  
    • cristiana
      Anyone else get a lot of upper respiratory infections?

      By cristiana · Posted

      Hi @HelloFlowersGoodbyeFlour I wonder if you suffer from reflux, as if you do, you may find it could also be irritating your airways.  I shall explain: I have to use a blue inhaler from time to time, and it seems to be related to reflux.  Never had any trouble before my coeliac diagnosis, the reflux seemed to be something that developed following a holiday to France in 2019, where I had been exposed to gluten.    The reflux continued into the autumn and winter, my throat itched to begin with, particularly after meals, but it then that feeling of irritation seemed to spread to my lungs.  I even found it difficult to breathe on occasion. What stopped it in its tracks was using a wedge pillow at night, following a reflux diet (you can find them online), not eating 2-4 hours before bed and also having a dose of Gaviscon Advanced at night, which forms a barrier so that acid/food can't go back up your esophagus.  The throat irritation faded, and then I found it easier to breathe again. Just mentioning in case it could be a contributing factor.
    • trents
      Anyone else get a lot of upper respiratory infections?

      By trents · Posted

      Since initially getting your D checked a few years ago, has it since rebounded to normal levels? Sounds like at some point you got it checked again.
×
×
  • Create New...