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

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. cristiana
      - cristiana replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Issues before diagnosis

      I agree, it so often overlooked! I live in the UK and I have often wondered why doctors are so reluctant to at least exclude it - my thoughts are perhaps the particular tests are expensive for the NHS, so therefore saved for people with 'obvious' symptoms. I was diagnosed in 2013 and was told immediately that my parents, sibling and children should...
    2. chrisinpa
      - chrisinpa commented on Scott Adams's article in Skin Problems and Celiac Disease
      2

      Celiac Disease and Skin Disorders: Exploring a Genetic Connection

      Maybe they can attribute certain skin conditions to either being susceptible to getting Celiac......or the other way around....but I have to ask if certain people are prone to Celiac because of genetics and some people aren't. It's kind of the same thing as what came first.....the chicken or the egg.?
    3. knitty kitty
      - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      My journey is it gluten or fiber?

      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities. If you are trying to add more fiber to your diet to ease constipation, considering...
    4. trents
      - trents replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Issues before diagnosis

      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac...
    5. trents
      - trents commented on Jefferson Adams's article in Other Diseases and Disorders Associated with Celiac Disease
      6

      Celiac Disease Patients Face Higher Risk of Systemic Lupus

      What kind of practitioner did the blood test? Was this a medical doctor, a naturopathic doctor, a GI doc? I would certainly follow up with them and ask why they advised you not to eat red meat. I mean, it could be something like they, themselves, are a vegetarian and give that advice to everyone. Have you had an endoscopy with biopsy of the small bowel...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,692
    • Most Online (within 30 mins)
      7,748
    Ali Zaib
    Newest Member
    Ali Zaib
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • cristiana
      Issues before diagnosis

      By cristiana · Posted

      I agree, it so often overlooked! I live in the UK and I have often wondered why doctors are so reluctant to at least exclude it - my thoughts are perhaps the particular tests are expensive for the NHS, so therefore saved for people with 'obvious' symptoms.  I was diagnosed in 2013 and was told immediately that my parents, sibling and children should be checked.  My parents' GP to this day has not put forward my father for testing, and my mother was never tested in her lifetime, despite the fact that they both have some interesting symptoms/family history that reflect they might have coeliac disease (Dad - extreme bloating, and his Mum clearly had autoimmune issues, albeit undiagnosed as such; Mum - osteoporosis, anxiety).  I am now my father' legal guardian and suspecting my parents may have forgotten to ask their GP for a test (which is entirely possible!) I put it to his last GP that he ought to be tested.  He looked at Dad's blood results and purely because he was not anemic said he wasn't a coeliac.  Hopefully as the awareness of Coeliac Disease spreads among the general public, people will be able to advocate for themselves.  It is hard because in the UK the NHS is very stretched, but the fallout from not being diagnosed in a timely fashion will only cost the NHS more money. Interestingly, a complete aside, I met someone recently whose son was diagnosed (I think she said he was 8).  At a recent birthday party with 8 guests, 4 boys out of the 8 had received diagnosis of Coeliac Disease, which is an astounding statistic  As far as I know, though, they had all had obvious gastric symptoms leading to their NHS diagnosis.  In my own case I had  acute onset anxiety, hypnopompic hallucinations (vivid hallucinations upon waking),  odd liver function, anxiety, headaches, ulcers and low iron but it wasn't until the gastric symptoms hit me that a GP thought to do coeliac testing, and my numbers were through the roof.  As @trents says, by the grace of God I was diagnosed, and the diet has pretty much dealt with most of those symptoms.  I have much to be grateful for. Cristiana
    • knitty kitty
      My journey is it gluten or fiber?

      By knitty kitty · Posted

      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities.   If you are trying to add more fiber to your diet to ease constipation, considering eating more leafy green vegetables and cruciferous vegetables.  Not only are these high in fiber, they also are good sources of magnesium.  Many newly diagnosed are low in magnesium and B vitamins and suffer with constipation.  Thiamine Vitamin B1 and magnesium work together.  Thiamine in the form Benfotiamine has been shown to improve intestinal health.  Thiamine and magnesium are important to gastrointestinal health and function.  
    • trents
      Issues before diagnosis

      By trents · Posted

      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac disease can produce. Clinicians often are only looking for classic GI symptoms and are unaware of the many other subsystems in the body that can be damaged before classic GI symptoms manifest, if ever they do. Many celiacs are of the "silent" variety and have few if any GI symptoms while all along, damage is being done to their bodies. In my case, the original symptoms were elevated liver enzymes which I endured for 13 years before I was diagnosed with celiac disease. By the grace of God my liver was not destroyed. It is common for the onset of the disease to happen 10 years before you ever get a diagnosis. Thankfully, that is slowly changing as there has developed more awareness on the part of both the medical community and the public in the past 20 years or so. Blessings!
    • knitty kitty
      Dizziness after eating green beans?

      By knitty kitty · Posted

      @EndlessSummer, You said you had an allergy to trees.  People with Birch Allergy can react to green beans (in the legume family) and other vegetables, as well as some fruits.  Look into Oral Allergy Syndrome which can occur at a higher rate in Celiac Disease.   Switching to a low histamine diet for a while can give your body time to rid itself of the extra histamine the body makes with Celiac disease and histamine consumed in the diet.   Vitamin C and the eight B vitamins are needed to help the body clear histamine.   Have you been checked for nutritional deficiencies?
    • sha1091a
      Issues before diagnosis

      By sha1091a · Posted

      I found out the age of 68 that I am a celiac. When I was 16, I had my gallbladder removed when I was 24 I was put on a medication because I was told I had fibromyalgia.   going to Doctor’s over many years, not one of them thought to check me out for celiac disease. I am aware that it only started being tested by bloodwork I believe in the late 90s, but still I’m kind of confused why my gallbladder my joint pain flatulent that I complained of constantly was totally ignored. Is it not something that is taught to our medical system? It wasn’t a Doctor Who asked for the test to be done. I asked for it because of something I had read and my test came back positive. My number was quite high.Are there other people out here that had this kind of problems and they were ignored? 
×
×
  • 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.