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

By Rikki Tikki
in Meet Up Room

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
      128,159
    • Most Online (within 30 mins)
      7,748
    Elaine Gilbert
    Newest Member
    Elaine Gilbert
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.7k
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Testing

      By trents · Posted

      Did your symptoms improve after going on a gluten-free diet?
    • Scott Adams
      Testing

      By Scott Adams · Posted

      Thank you for sharing your genetic test results and background. Your results indicate you carry one half of the DQ2 heterodimer (DQA1*05), which is associated with a very low celiac disease risk (0.05%). While most celiac patients have either DQ2 or DQ8, these genes are also present in people without celiac disease, so the test alone doesn’t confirm a diagnosis. Since you’ve been gluten-free for 10 years, traditional diagnostic methods (like endoscopy or blood tests) would not be reliable now. If an official diagnosis is important to you, consider discussing a gluten challenge with your doctor, where you reintroduce gluten for a period before testing. Alternatively, you could focus on symptom management and dietary adherence, as your gluten-free diet seems to be helping. Consulting a gastroenterologist or celiac specialist could provide further clarity.  Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      Celiac or Addison's complications? Can someone share their experience?

      By Scott Adams · Posted

      @cvz Thank you for sharing your daughter’s story. It sounds like she is managing multiple complex conditions with great care and diligence. It’s encouraging to hear that she is compliant with her gluten-free diet and that her Addison’s disease symptoms are under control. The addition of electrolytes seems like a thoughtful suggestion, especially given her fluid intake. It’s also reassuring that she hasn’t shown noticeable symptoms from accidental gluten exposure, though it’s understandable how challenging it can be to monitor for such incidents. The unexplained high lipase levels are intriguing—perhaps further investigation or consultation with a specialist could provide more clarity. Wishing you both continued strength and success in managing her health. Please keep us updated on her progress!
    • Kj44
      Testing

      By Kj44 · Posted

      Hello I received this in a genetic lab test I requested from my provider.    The patient is positive for DQA1*05, one half of the DQ2 heterodimer. The celiac disease risk from the HLA DQA/DQB genotype is approximately 1:1842 (0.05%). This is less than the 1% risk in the general population. Allele interpretation for all loci based on IMGT/HLA database version 3.55 HLA Lab CLIA ID Number 34D0954530 Greater than 95% of celiac patients are positive for either DQ2 or DQ8 (Sollid and Thorsby, (1993) Gastroenterology 105:910-922). However these antigens may also be present in patients who do not have Celiac disease.   Some background, I have been eating gluten free for about 10 years now. I have never had an official celiac diagnosis due to endoscopy and labs tested after I had already been eating gluten free for over 1 year. I was constantly sick and told you slowly remove foods and see what effects my symptoms. I have also come to realize that I have other symptoms of celiacs and recently requested the genetic testing shown above.    I am looking to see if anyone has other recommendations for testing or just to clarify the results for me as I feel the official diagnosis could be helpful but I am not positive that it is even true for me. 
    • cvz
      Celiac or Addison's complications? Can someone share their experience?

      By cvz · Posted

      My daughter, age 48, has Down syndrome, hypothyroidism, Addison's disease, and Celiac disease, which was diagnosed based on blood tests last July.  After a small intestine biopsy last fall, we were told that she has severe celiac disease.  She is taking both levothyroxine and leothyronine for her hypothyroidism and both hydrocortisone and fludrocortisone for Addison's disease.  She also takes Folic acid, magnesium, vitamin B-12, DHEA (DAGA), and a multivitamin.  In July, she started on a gluten-free diet and is very compliant.  She has had constipation and diarrhea issues all her life and now controls the constipation with Miralax, prunes, and apricots.  Shel has only very occasional syncopes or vasovagal events and muscle aches in her upper back and neck.  She drinks 4-6 or more 12 oz bottles or of liquid per day.  Her doctor has just suggested adding electrolytes to one of those bottles daily.   We are sorry to learn about the issues you are having and would like to stay in touch.  We do not know anyone else with both Addison's disease and celiac disease.  So far, she has no recognizable symptoms.  We are doing our best to keep her gluten-free, but have no way of knowing if she has had an exposure to it unless we catch it ourselves.  For example, a few weeks ago, a restaurant mistakenly breaded her fish, and I did not notice it until she had eaten most of it.  She had no identifiable symptoms of the exposure then or days later. By the way, the reason she was screened for Celiac disease was that her blood lipase levels were unexplainably high.  They still are.  We have no idea why.    
×
×
  • Create New...