Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


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

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Starting A Support Group

Rikki Tikki

Recommended Posts

Rikki Tikki Explorer
Rikki Tikki
Posted

I am trying to get a support group going in my area for people with celiac. Does anyone have any suggestions or helpful hints and what all I will need to do? The best way to get it going and keep it going strong?

I did e-mail some gluten free companies to see if they would donate any products.

Thanks

Sally

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

Celiac.com Sponsor (A8-M):


tpineo Rookie
tpineo
Posted

Sally,

I just did this-

1) Contact your local papers- most will run an announcement on the community page for free.

2) Inform the GI docs, family docs, internal med docs in your area and they will pass info on to patients- this works better if you give them a flyer to pass on.

3) Call the companies- they are generous and will donate samples.

4) Make up a basic packet of information for newly diagnosed celiacs- they will really appreciate basic lists like where to shop, good cookbooks, etc.

Good luck, Tania Greenville, PA

Rikki Tikki Explorer
Rikki Tikki
Posted
  • Author

Thank-you Tania.

I did e-mail some company's yesterday but I have only heard from a couple of them.

Did you have the meeting in your home or in a restaurant? I believe more people have been diagnosed here now. When I saw my GI doctor week before last he said he had diagnosed 2 new people. It doesn't seem like many, but I have a feeling more and more people are going to find out they have it.

At least I hope they do, I really don't want people to suffer for years like I did, thinking it was all in my head.

Thanks again

Sally B)

kactuskandee Apprentice
kactuskandee
Posted

Hi Sally,

I agree with Tina plus run free radio spots on the local stations.

Try to get the newspaper to run the ad continuously.

And ask a hospital dietitian to join you...they are sometimes in the know, but often are there for information too.

As to location we asked the hospital to donate a conference room. They were more than willing if it was on an evening that another group didn't meet. That makes it neutral ground for all to be at. Right now it is only once every 6 months but if it goes well I hope we can run one once a month.

Kandee

  • 4 weeks later...
tpineo Rookie
tpineo
Posted

We use space at a doctor's office for the meetings but I think a home is fine, too. Tania Greenville, PA

Guest GFLisa0405
Guest GFLisa0405
Posted

Where are you from?

Archived

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

Go to topic listing

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



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. trents
      - trents replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Welcome to celiac.com, @Jane02! Have you had your serum D levels checked for deficiency/sufficiency? What about cod liver oil? Egg yolks can also be a good source of vitamin D.
    2. Jane02
      - Jane02 posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hello, I'm very discouraged. I've been trying to find a safe vitamin mineral supplement brand for months and am tired of testing one after the other and experiencing my typical 'glutening' reactions. I'm really feeling the nutritional deficiencies set in. I'm doing the best I can to get these nutrients from my food, although it's impossible for me to...
    3. knitty kitty
      - knitty kitty commented on Scott Adams's article in Multiple Sclerosis and Celiac Disease
      3

      Gluten-Free Diet Linked to Reduced Inflammation and Improved Outcomes in Multiple Sclerosis (+Video)

      I worried at one point on my journey whether I had MS, having many of the symptoms myself. However, my symptoms improved dramatically with high dose thiamine hydrochloride, Benfotiamine, and Thiamine TTFD. Thiamine deficiency symptoms overlap with MS symptoms, including changes on brain MRIs. Thiamine deficiency affected my eyes (light sensitivity),...
    4. trents
      - trents replied to Matthias's topic in Coping with Celiac Disease
      1

      Unexpected gluten exposure risk from cultivated mushrooms

      Welcome to the celiac.com communiuty, @Matthias! Yes, we have been aware that this can be an issue with mushrooms but as long as they are rinsed thoroughly it should not be a problem since the mushrooms don't actually incorporate the gluten into their cellular structure. For the same reason, one needs to be careful when buying aged cheeses and products...
    5. Matthias
      - Matthias posted a topic in Coping with Celiac Disease
      1

      Unexpected gluten exposure risk from cultivated mushrooms

      The one kind of food I had been buying and eating without any worry for hidden gluten were unprocessed veggies. Well, yesterday I discovered yet another pitfall: cultivated mushrooms. I tried some new ones, Shimeji to be precise (used in many asian soup and rice dishes). Later, at home, I was taking a closer look at the product: the mushrooms were growing...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,327
    • Most Online (within 30 mins)
      7,748
    PattyPagnanelli
    Newest Member
    PattyPagnanelli
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Hi @trents, yes I've had my levels checked in Dec 2025 which revealed vit D deficiency. I considered eggs although they only contain about 45 IU vitamin D/egg. I need 2000 IU vitamin D for maintenance as per my doctor. Although now, I likely need way more than that to treat the deficiency. My doctor has yet to advise me on dosing for deficiency. I've also considered cod liver oil, although again, if it's processed in a facility that has gluten, especially on flour form, I worried to test it, even if they have protocols in place to mitigate cross-contamination with gluten.
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Welcome to celiac.com, @Jane02! Have you had your serum D levels checked for deficiency/sufficiency? What about cod liver oil? Egg yolks can also be a good source of vitamin D.
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Hello, I'm very discouraged. I've been trying to find a safe vitamin mineral supplement brand for months and am tired of testing one after the other and experiencing my typical 'glutening' reactions. I'm really feeling the nutritional deficiencies set in. I'm doing the best I can to get these nutrients from my food, although it's impossible for me to intake enough vitamin D as I can't have dairy and have insufficient sun exposure in the northern hemisphere. I've tried B Complex from Country Life (certified gluten-free) - horrible reaction. I've tried Metagenics vitamin D tab (certified glute-free) - bad reaction. I've tried liquid vitamin D Thorne and D Drops - reactions were mild since I tried a drop of a drop. I understand there could be other things I'm reacting to in my diet, although my diet/intake is pretty consistent with minimal variables so I do think it's something in these supplements. I understand I could be reacting to the active ingredient vitamin/mineral itself or even the filler ingredients. I tried the vitamin D drops since the only filler ingredient is coconut oil, in some brands, which I know I can tolerate really well on its own - I cook with coconut oil frequently and have no 'glutening' reactions at all. Perhaps I'm reacting to the vitamin D itself, although I eat fatty fish every few days, an entire fillet with no 'glutening' reactions, which contains anywhere between 400-600 IU per fillet so I shouldn't be sensitive to vitamin D. All this to say, I'm desperately looking for at least a safe vitamin D supplement. Does anyone know of a safe vitamin D supplement brand? I'd love to know if there are any supplement brands that have absolutely no gluten (especially in flour form) in their facilities. I've heard of Kirkman having no grains in their facility - I may try this brand. Has anyone reacted to this brand?   
    • trents
      Unexpected gluten exposure risk from cultivated mushrooms

      By trents · Posted

      Welcome to the celiac.com communiuty, @Matthias! Yes, we have been aware that this can be an issue with mushrooms but as long as they are rinsed thoroughly it should not be a problem since the mushrooms don't actually incorporate the gluten into their cellular structure. For the same reason, one needs to be careful when buying aged cheeses and products containing yeast because of the fact that they are sometimes cultured on gluten-containing substrate.
    • Matthias
      Unexpected gluten exposure risk from cultivated mushrooms

      By Matthias · Posted

      The one kind of food I had been buying and eating without any worry for hidden gluten were unprocessed veggies. Well, yesterday I discovered yet another pitfall: cultivated mushrooms. I tried some new ones, Shimeji to be precise (used in many asian soup and rice dishes). Later, at home, I was taking a closer look at the product: the mushrooms were growing from a visible layer of shredded cereals that had not been removed. After a quick web research I learned that these mushrooms are commonly cultivated on a cereal-based medium like wheat bran. I hope that info his helpful to someone.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.