Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,163
    • Most Online (within 30 mins)
      7,748
    Estee
    Newest Member
    Estee
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • DAR girl
      Celiac and allergic to common subs and adds in prepared foods

      By DAR girl · Posted

      Looking for help sourcing gluten-free products that do not contain potato or corn derived ingredients. I have other autoimmune conditions (Psoriatic Arthritis and Sjogrens) so I’m looking for prepared foods as I have fatigue and cannot devote a lot of time to baking my own treats. 
    • Scott Adams
      Disregarded

      By Scott Adams · Posted

      I am so sorry you're going through this. It's completely understandable to feel frustrated, stressed, and disregarded after such a long and difficult health journey. It's exhausting to constantly advocate for yourself, especially when you're dealing with so many symptoms and positive diagnoses like SIBO, while still feeling unwell. The fact that you have been diligently following the diet without relief is a clear sign that something else is going on, and your doctors should be investigating other causes or complications, not dismissing your very real suffering. 
    • Oldturdle
      Paying for my own Celiac screening at WalkInLab so a positive result doesn’t become part of my medical history

      By Oldturdle · Posted

      It is just so sad that health care in the United States has come to this.  Health insurance should be available to everyone, not just the healthy or the rich.  My heart goes out to you.  I would not hesitate to have the test and pay for it myself.  My big concern would be how you could keep the results truly private.  I am sure that ultimately, you could not.  A.I. is getting more and more pervasive, and all data is available somewhere.  I don't know if you could give a fake name, or pay for your test with cash.  I certainly would not disclose any positive results on a private insurance application.  As I understand it, for an official diagnosis, an MD needs to review your labs and make the call.  If you end up in the ER, or some other situation, just request a gluten free diet, and say it is because you feel better when you don't eat gluten.      Hang in there, though.  Medicare is not that far away for you, and it will remove a lot of stress from your health care concerns.  You will even be able to "come out of the closet" about being Celiac!
    • plumbago
      Paying for my own Celiac screening at WalkInLab so a positive result doesn’t become part of my medical history

      By plumbago · Posted

      Yes, I've posted a few times about two companies: Request a Test and Ulta Labs. Also, pretty much we can all request any test we want (with the possible exception of the N protein Covid test and I'm sure a couple of others) with Lab Corp (or Pixel by Lab Corp) and Quest. I much prefer Lab Corp for their professionalism, ease of service and having it together administratively, at least in DC. And just so you know, Request a Test uses Lab Corp and Quest anyway, while Ulta Labs uses only Quest. Ulta Labs is cheaper than Request a Test, but I am tired of dealing with Quest, so I don't use them so much.
    • Scott Adams
      Does Dailymed.nlm.nih.gov site have filters for gluten?

      By Scott Adams · Posted

      PS - I think you meant this site, but I don't believe it has been updated in years: http://glutenfreedrugs.com/ so it is best to use: You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
×
×
  • Create New...