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

First Support Meeting


etta694

Recommended Posts

etta694 Explorer

I've decided to have the first ever Celiac/Gluten Free support group meeting in the area around our town (100ish mile radius). I have not struggled to the extent that many have nor is Celiac or Gluten problems well known in this surrounding area. I'm sure most have information from the web but I still plan to have some info for those that are not computer literate. For the most part, I am thinking this is needed for connecting with others, emotional support, some for info, possibly for sharing recipes, and some for resourcing answers to problems that others could help with. Is there anything obvious that I am missing here that I need to consider? I am not an organizer and this is totally new for me.

If you have anything I could share with this new group or any suggestions I would be very grateful.


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



Celiac.com Sponsor (A8-M):



ciavyn Contributor

Etta -- check out GIG, which had local meetings in many major cities. If one isn't close to you, go for it. If there is one nearby, check it out to see if it provides what you are looking for. You still may want to consider doing your own. Make sure your meetings are held in an area near to several populated cities/towns. You could utilize meetup.com for gluten free support group advertising, as well as boards like these (though I'm not sure what the policy is here at celiac.com's forums, so you should probably ask first!) Put up fliers, think of what kinds of events you'd like to plan. An open potluck for gluten free folks would be a good ice breaker, and just ensure everyone brings along a dish, the recipe with specific ingredients including the brand used, and an open mind. :) That way, anyone can feel comfortable. And be prepared to manage friendships...and disagreements. They happen in every group. But it's worth it.

In fact, I'm thinking i might try to find something similar in my own town...

etta694 Explorer

Thank you for your thoughts, I appreciate it.. I am thinking that the group thing here is a good idea because we can't travel that far in winter (too much snow and ice) and people need something closer. The closest would be 2 hours drive. A POTLUCK!!! Yum..I'm for that! I think that will be the first event (after our initial get together - I want to see what the interest level is here.) I've done fliers.. I am going to try the local radio too.

mamaw Community Regular

Etta

I posted info on starting up a group back on Oct 2,2010, I think if you go back to page 3 on that date you will find info. It may not be what you are looking for but I've had a group for many years now.I run it independently . I agree the GIG is a great group & if I ever decide to join up with a national group it will be GIG>

When you go it alone you will be the person who is responsibible for the entire meeting.. So you need to be prepared for anything ...

I don't want to discourage anyone from helping others in this lifestyle but I don't want anyone who is trying to help others get in a mess... When you join a national group you follow their rules & regulations& then you ,yourself are not totally responsible if something occurs. So you said there was no group close to you , well maybe consider starting or joining the GIG. They will help you get it going & give you support..

blessings

mamaw

etta694 Explorer

I'm in Canada so I looked this up because I'm not familiar with it. It is Gluten Intolerance Group® of North America... I am going to look into this.. we're N. America :P . Thank you for that suggestion, all.

Sometimes it seems to take time for things to sink in... so I finally hear that having some guidelines, rules, and regulations in place is beneficial.. instead of trying to put out fires after the fact. I looked into Gig and also researched support group ground rules. Excellent. Organization is NOT my strong point.

  • 2 weeks later...
Rome Newbie

I've decided to have the first ever Celiac/Gluten Free support group meeting in the area around our town (100ish mile radius). I have not struggled to the extent that many have nor is Celiac or Gluten problems well known in this surrounding area. I'm sure most have information from the web but I still plan to have some info for those that are not computer literate. For the most part, I am thinking this is needed for connecting with others, emotional support, some for info, possibly for sharing recipes, and some for resourcing answers to problems that others could help with. Is there anything obvious that I am missing here that I need to consider? I am not an organizer and this is totally new for me.

If you have anything I could share with this new group or any suggestions I would be very grateful.

I think this is a wonderful idea. Maybe your first meeting could just be like an icebreaker, getting to know each other, and having everyone give you some input on what they would like to get out of the meetings, what their main concerns are, find out what they know, what you think they might need to know, etc. Maybe you could have like a weekly topic for discussion. Just some ideas. I like the potluck idea, recipe exchange.

Good luck!

etta694 Explorer

I think this is a wonderful idea. Maybe your first meeting could just be like an icebreaker, getting to know each other, and having everyone give you some input on what they would like to get out of the meetings, what their main concerns are, find out what they know, what you think they might need to know, etc. Maybe you could have like a weekly topic for discussion. Just some ideas. I like the potluck idea, recipe exchange.

Good luck!

Thank you for those ideas! I am very excited, the meeting is less than a week away and I have had a few people contacting me including a store here that wants to order gluten free products (we just lost our old supplier here in town), and a couple of business people wanting to display product. Thanks for the encouragement. I'll post the results on the 29th.


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



Celiac.com Sponsor (A8-M):



etta694 Explorer

We had our first meeting last night and there were 10 people despite the icy roads. There was one diagnosed and 8 self-diagnosed and 1 attending for her niece who was going to be visiting and she wanted info.

It was very good, I shared an article from this site and some lists of symptoms and foods also from this site. I shared about how there are so many people here that have been through every kind of trial and the insight that people on here have. I encouraged them to get on here if they need help. We had someone with a skin care line and someone who talked about sources of supplies. We shared stories...and snacks..

And we talked about a potluck for next time. And .. we ran out of time, it was good.

And there were no fires to put out :P

Thanks again for the help everyone :)

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,029
    • Most Online (within 30 mins)
      7,748

    Jen72
    Newest Member
    Jen72
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Your experience is both shocking and critically important for the community to hear, underscoring the terrifying reality that cross-contamination can extend into the most unexpected and invasive medical devices. It is absolutely devastating that you had to endure six months of sickness and ultimately sustain permanent vision loss because a doctor dismissed your legitimate, life-altering condition. Your relentless research and advocacy, from discovering the gluten in MMA acrylic to finding a compassionate prosthodontist, is a testament to your strength in a system that often fails celiac patients. While the scientific and medical consensus is that gluten cannot be absorbed through the skin or eyes (as the molecules are too large to pass through these barriers), your story highlights a terrifying gray area: what about a substance *permanently implanted inside the body*, where it could potentially shed microparticles or cause a localized immune reaction? Your powerful warning about acrylic lenses and the drastic difference with the silicone alternative is invaluable information. Thank you for sharing your harrowing journey and the specific, severe neurological symptoms you endure; it is a stark reminder that celiac is a systemic disease, and your advocacy is undoubtedly saving others from similar trauma.
    • Scott Adams
      Those are driving distance from me--I will try to check them out, thanks for sharing!
    • Scott Adams
      I am so sorry you're going through this bad experience--it's difficult when your own lived reality of cause and effect is dismissed by the very professionals meant to help you. You are absolutely right—your violent physical reactions are not "what you think," but undeniable data points, and it's a form of medical gaslighting to be told otherwise, especially when you have a positive HLA-DQ2 gene and a clear clinical picture. Since your current "celiac specialist" is not addressing the core issue or your related conditions like SIBO and chronic fatigue, it may be time for a strategic pivot. Instead of trying to "reprove" your celiac disease to unwilling ears, consider seeking out a new gastroenterologist or functional medicine doctor, and frame the conversation around managing the complications of a confirmed gluten-free diet for celiac disease. Go in and say, "I have celiac disease, am strictly gluten-free, but I am still suffering from these specific complications: SIBO, chronic fatigue, dermatological issues, and high blood pressure linked to pain. I need a partner to help me address these related conditions." This shifts the focus from a debate about your diagnosis to a collaborative plan for your current suffering, which is the help you truly need and deserve to work toward bouncing back.
    • NanCel
      Hello, no I had to have them re done and then used a liner over the top.  Many dentists are not aware of the celiac effects.  Best of luck.   There is other material, yet, very expensive.
    • sleuth
      He is not just a psychiatrist.  He is also a neuroscientist.  And yes, I have already read those studies.   I agree with benfotiamine.  This is short term while glutened/inflammation occurs.  As I had already mentioned, these symptoms no longer exist when this phase passes.  And yes, I know that celiac is a disease of malnutrition.  We are working with a naturopath.
×
×
  • 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.