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
      131,601
    • Most Online (within 30 mins)
      7,748

    rita jean
    Newest Member
    rita jean
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)


  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Wheatwacked
      Yes.  Now, if you hit your finger with a hammer once, wouldn't you do your best not to do it again?  You have identified a direct connection between gluten and pain.  Gluten is your hammer.  Now you have to decide if you need a medical diagnosis.  Some countries have aid benefits tgat you can get if you have the diagnosis, but you must continue eating a gluten-normal diet while pursuing the diagnosis. Otherwise the only reason to continue eating gluten is social. There are over 200 symptoms that could be a result of celiac disease.. Celiac Disease and Non Celiac Gluten Sensitivity  both cause multiple vitamin and mineral deficiency.  Dealing with that should help your recovery, even while eating gluten.  Phosphatidyl Choline supplements can help your gut if digesting fats is a problem,  Consider that any medications you take could be causing some of the symptoms, aside from gluten.        
    • trents
      Welcome to the forum, @Ben98! If you have been consciously or unconsciously avoiding gluten because of the discomfort it produces then it is likely that your blood antibody testing for celiac disease has been rendered invalid. Valid testing requires regular consumption of generous amounts of gluten. The other strong possibility is that you have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms with celiac disease but does not have the autoimmune component and thus does not damage the small bowel lining. It is 10x mor common than celiac disease. There is currently no test for NCGS. Celiac disease must first be ruled out. Some experts in the field believe it can be a precursor to the development of celiac disease. Having one or both of the primary genes for developing celiac disease does not imply that you will develop active celiac disease. It simply establishes the potential for it. About 40% of the population has the genetic potential but only about 1% develop active celiac disease. 
    • Ben98
      TTG blood test and total IGA tested on many occasions which have always remained normal, upper GI pain under my ribs since 2022. I had an endoscopy in 2023 which showed moderate gastritis. no biopsy’s were taken unfortunately. genetic test was positive for HLADQ2. extreme bloating after eating gluten, it’ll feel like I’ve got bricks in my stomach so uncomfortably full. the pain is like a dull ache under the upper left almost like a stitch feeling after a long walk. I am just wanting some advice has anyone here experienced gastritis with a gluten issue before? thank you  
    • Wheatwacked
      "Conclusions: The urinary iodine level was significantly lower in women with postmenopausal osteoporosis, and iodine replacement may be important in preventing osteoporosis"  Body iodine status in women with postmenopausal osteoporosis Low iodine can cause thyroid problems, but Iodine deficiency will not show up in thyroid tests.  Iodine is important for healing, its job is to kill off defective and aging cells (Apoptosis). Skin, brain fog, nails, muscle tone all inproved when I started taking 600 mcg (RDA 150 - 1000 mcg) of Liquid Iodine drops. Some with dermatitis herpetiformis, Iodine exacerbates the rash.  I started at 1 drop (50 mcg) and worked up to 12 drops, but I don't have dermatitis herpetiformis.
    • cristiana
      That's great news, you can do this.  Let us know how things go and don't hesitate to ask if you have any more questions. Cristiana 😊
×
×
  • 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.