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

Questions Questions

deb

By deb
in Introduce Yourself / Share Stuff

Recommended Posts

deb Apprentice
deb
Posted

First let me explain there are no support groups closer than 150 miles from my small rural town.

I have had a few people ask me to help them with a gluten-free diet.

I would like to start a support group in my area for those whom have a Gluten issue or have been diagnoised with Celiac's.

I know there are a lot of others in our area who could benifit from help.

I have never been to a support group of any kind

How does one start a group?

What is the usually agenda for meetings?

Does a group need to be backed by a national organization?

How often do groups typically meet?

Should any information forms or questionnaires be used?

Any & all help or suggestions will be greatly appreciated. I am hoping to get started as soon as I can.

Deb

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

Celiac.com Sponsor (A8-M):


Lisa Mentor
Lisa
Posted
First let me explain there are no support groups closer than 150 miles from my small rural town.

I have had a few people ask me to help them with a gluten-free diet. 

I would like to start a support group in my area for those whom have a Gluten issue or have been diagnoised with Celiac's. 

I know there are a lot of others in our area who could benifit from help.

I have never been to a support group of any kind

How does one start a group?

What is the usually agenda for meetings? 

Does a group need to be backed by a national organization? 

How often do groups typically meet? 

Should any information forms or questionnaires be used?

Any & all help or suggestions will be greatly appreciated.  I am hoping to get started as soon as I can.

Deb

<{POST_SNAPBACK}>

Deb:

Check the web site for Celiac Sprue Association.  They will give you a phone number.  Give them a call and let them know that you would like to begin a support group in your area......They are all about that.  They will let you talk to someone and send you lots  of information to get started.  They would be more glad to help. :)

PS:  I'm all into these clickable smilies, just realized all you need to to is double click.  B)

floridanative Community Regular
floridanative
Posted

Deb - kudos to you! I went to my first gluten-free support group meeting just over a week ago and it made me feel like I wasn't the only freak with this wierd (to me anyway) disease. I'm lucky to have two such groups in my metro area.

Anyway, I do know that our leader mentioned about the Celiac Sprue Association. I think she said you need an MD and a nutritionist sponsor to get a chapter started. If you call their toll feel number (found on webmd.com) then you'll be on the right track as to what they'll need from you to start a new group. Sorry I don't have more info than that but I think CSA can help you from here.

I'm sure each group varies but one group here meets every other month and another meets once per quarter.

Good luck!

lbsteenwyk Explorer
lbsteenwyk
Posted

I recently started a support group in conjunction with the hospital where I work. But you don't have to work at a hospital to get one started. Someone in our community actually approached the hospital's health education center (most hospitals have some type of community outreach center) about starting a group, then they contacted the dietitians looking for someone in the hospital to be involved with the group. So, if you can get someone in your local hospital interested in helping you to start a group, that might be a good place to start. Having the hospital involved was very helpful, because they sent out press realeases about the group and even invited us to do a radio program to promote the support group. Also, we meet at their education center, which has AV equipment, plenty of room, etc. I was able to send out flyers to all the local physicians offices through the hospital, too.

We are not affiliated with a national group, although I understand that GIG and the CSA do offer affiliations to local groups.

Our group meeets once a month. I have not used forms or questionnaires at this point, but I do have people sign in and collect their names, addresses, phone # and email for communication purposes. Our format thus far (we have just had 2 meetings) has been to have a 30 minute formal program on a particular topic (I've done label reading and the oats controversy so far), time for discussion among the group and time to sample whatever free samples I've been able to get from gluten-free food manufacturers. I also give away door prizes at the end of the program. I've had great luck getting samples to eat and give a way. People love getting free stuff!! Future meetings I have planned include: a tour and "tasting" at a local health food store, a Thanksgiving potluck meal, a discussion among the group about experiences at local restaurants, and a tour of a local grocery store chain that carries quite a few gluten-free items ( their corporate dietitian will lead the tour).

All this has taken quite a bit of time to get going, we were in the planning stages for several months, but our efforts have been very successful. We had 16 people at our first meeting and over 20 at our second. (I live in a small sized community). I expect our numbers to grow as the word spreads. People have been very greatful for the opportunity to attend a local support group.

If you have further questions, feel free to PM me. Good luck with getting a support group started.

deb Apprentice
deb
Posted
  • Author

Thanks for all the suggestions.

I have sent emails to GIG & CSA.

I will contact our local hospital next week. I used to work there & know the Education Director. What a great suggestion. I know she would love to help me. If you think of anything else or if someone else has suggestion, keep them coming.

Thanks

Deb

:D

Jnkmnky Collaborator
Jnkmnky
Posted

R.O.C.K. started by Danna Korn is really good. You get everything you need, advice, ideas, the use of the logo and insurance for your group.

  • 4 weeks later...
Sue Bob Newbie
Sue Bob
Posted

I will be traveling to Ashville, NC and I am wondering if anyone can recommend any places to eat while we are there.

Thanks,

Sue

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

Celiac.com Sponsor (A8-M):


Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      129,987
    • Most Online (within 30 mins)
      7,748
    BeaJae
    Newest Member
    BeaJae
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • The Logician
      Gluten Sensitivity

      By The Logician · Posted

      Thank you for your response. I have had several different antibiotics over the years and none affected my sensitivity to wheat products which I assumed was due to the gluten in them. However I do believe this time it was an antibiotic I’ve never had before so if your explanation is correct it would seem this antibiotic (cefuroxime 500 MG tablet Commonly known as: CEFTIN, 1 tablet by mouth 2 (Two) Times a Day for 10 days.)  could be a cure for my sort of sensitivity. I assume the hospital IV was the same antibiotic. The IV was ordered because my blood culture showed bacteria in my blood. I remember hearing years ago the gmo wheat was found in some products but I guess that was a misnomer. Believe me after over 20 years of putting up with this sensitivity, despite the fact that growing up eating subs, pizza and spaghetti regularly never affected me, I am so relieved to no longer have to avoid wheat.. I hope!
    • trents
      Gluten Sensitivity

      By trents · Posted

      Welcome to the forum, @The Logician! Many antibiotics have anti-inflammatory properties. By the way, GMO wheat is not used in food products: https://www.chefsresource.com/faq/is-wheat-genetically-modified-in-the-united-states/ There is a common misconception that it is.
    • The Logician
      Gluten Sensitivity

      By The Logician · Posted

      I do not have celiac disease however for 20 years-plus I have been sensitive to gluten. A slice of bread will give me diarrhea in less than an hour. This started with me around the time I believe GMO wheat was beginning to appear in products on the market. Last week i went into the hospital to get antibiotic IV for three days. While there I was constipated so I figured eating gluten would fix that. I had gluten at every meal and it had no affect on me. I was still constipated until I got home and hen started having normal bowel movements even though I continued eating gluten products and I have never felt better! Not even a hint of diarrhea. I’ve eaten some gluten in bread, cream of wheat, pizza every day now for 7 days and still no reaction. I have read that antibiotics may cause gluten sensitivity but not the opposite.  I’m wondering if my gluten sensitivity was not to gluten but a sensitivity to how gluten reacted to a bacteria (good or bad) in my gut. A bacteria which has been removed by the antibiotics I am taking. I stopped antibiotics today. My doctor had no clue why this occurred and wasn’t interested in finding out so I’d like to know if this information could be helpful to anyone studying gluten sensitivity.
    • Scott Adams
      Finally got in to doctor to get my referral and I lucked out and got into Gastro the same day - question about different transglutaminase results

      By Scott Adams · Posted

      It sounds like your gastroenterologist is becoming increasingly confident that celiac disease is the likely diagnosis based on both your older and newer lab results. Her suggestion to call each Monday for possible cancellations is actually a great strategy—especially given how long the wait is until your August 29th appointment. It’s also a good sign that she’s advocating for you to be seen sooner, which shows she’s taking your case seriously. The fact that some labs might not have been drawn yet due to overlap with your functional health doctor’s upcoming testing adds a layer of confusion, but that’s unfortunately common when multiple providers are involved. Hopefully, the GI’s remaining labs will still get processed, or she can reorder them if needed. As for the colonoscopy prep, it’s totally understandable that you're dreading it—many people rank it among the least pleasant medical experiences. You’re definitely not alone in preferring the pill prep option over the liquid kind, especially if you don’t drink Gatorade and had a rough experience with Miralax in the past. Hopefully, your doctor will approve the pill form, especially since you’ve tolerated other options poorly before. Fortunately, the upper endoscopy doesn’t require any bowel prep—just fasting, usually starting the night before—so that part should be easier to handle. It’s great that you’re already trying to boost your gluten intake, but yes, tracking gluten content can be surprisingly tricky. You’re right that the general rule for wheat-based products is to multiply the protein content by about 0.75 to estimate the gluten content. That means foods like oyster crackers, while convenient, may not pack enough gluten to help reach the recommended daily goal of around 10 grams before biopsy. It’s helpful that you caught that early, and switching to more gluten-dense foods like regular wheat bread, pasta, or wheat cereals might make it easier to hit your target. It’s not easy eating more gluten when you’re trying to manage symptoms or just not used to it, but doing so can make a big difference in ensuring your biopsies are accurate. You’re on the right track—hopefully with a little luck, you’ll get a cancellation and be seen sooner.
    • cristiana
      Worried about being isolated

      By cristiana · Posted

      Thanks for sharing that film, @trents.  I am not sure how I missed that film as I see it is a few years old, but it is very good.  I think you should be fine if you take your own packed lunch and eat it from your own lunchbox etc.  Might be worth doing a lunchtime recce to see how cramped the room is before making a decision - for all you know, there may be other people  there who don't eat gluten?
×
×
  • Create New...