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

Raising Our Celiac Kids -rock Support Group

stolly

Recommended Posts

stolly Collaborator
stolly
Posted

My husband and I are really interested in starting a ROCK support group in our area (DD3 has celiac). Everything was so overwhelming when she was first diagnosed, but things are much easier now, and we'd like to help other families while getting the chance to meet people too. I emailed Danna Korn and she sent me the info needed to start a group. I was just wondering from the experts here on this board...do you have a ROCK group in your area? Do you enjoy it? Do you just have parties/potlucks? Do you ever have guest speakers like Danna suggests? Any other events? How often do you meet? In addition to the potlucks/parties, I'd love to come up with lists of tips/suggestions for the participating families...good places to shop, etc. I'm also nervous about how to find/recruit people to join. Just looking for some firsthand experiences before signing the dotted line and starting the group. Thanks!!

ps- I hope it's ok to post in this kids section, I thought I might here from more parents here rather than the support group section.

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

Celiac.com Sponsor (A8-M):


missy'smom Collaborator
missy'smom
Posted

I wish we had a ROCK group in our area so my kiddo could get together with other gluten-free kids. We have a great active support group and occasionally a kid or two will come with parent but not consistantly. We have a focus for each month-we meet once a month-or a speaker but it's a little boring for kids to sit through 2 hr. meeting at night. Speakers are nutritionists, local or regional GI docs. Jan. is back to basics, Dec. is holiday party, one of the summer months is family picnic/BBQ potluck with a local restaurant supplying gluten-free fried chicken. I think it would be fun to bake/make treats with the kids esp. holidays-V-Day Halloween etc.

CeliacMom2008 Enthusiast
CeliacMom2008
Posted

We started a ROCK group last summer for all the same reasons you're considering it. We're still a ROCK group of just one family! But my son so wants to meet other Celiac kids, so I'd say go for it!

What we've done (and that obviously hasn't worked so great...yet!) is create a website, announce it here, announce it in our adult support group's newsletter, and made fliers that we gave to our Ped GI's office.

Good luck!

flagbabyds Collaborator
flagbabyds
Posted

when i was diagnosed in 1992 there was NOTHING. around second grade there was an adult celiac group that started at stanford. i started attending, but really was the only person under 30 (not to mention i hadn't even gotten into double digits yet...) and i felt a little awkward, cause it was just weird. In 4th grade they put on the first celiac conference for the bay area.

i was greeted by one other girl who's parents had draggede her to the conference too. My mom and her parents decieded that a ROCK group would be a good place to start.

Soon we had about 10 members in it, and it grew by a lot in the following years.

We would meet About oncea month, different places. A lot of people decided to host the meetings at their houses, or during spring and summer we would go to parks to play and eat food.

Every family had to bring at least one dish to contribute to the potluck, and all the ingredents had to be listed (due to kids with other allegies...)

Also recipes were included so we could make the dishes that we liked when we got home. The group grew pretty fast, my mom started a Yahoo group for the group, so we could send out messages about meetings and anything celiac related...

It worked out really well, I outgrew the group and started my own spinoff organization (teens against gluten (TAG)) with Danna Korn and it's working pretty well, it's organized the same as ROCK, just geared towards celiac teens instead of parents.

ROCK groups are great, i would say start posting about your group on all celiac related message boards, and get the news out in any newsletter that wil let you put a blurb about your group in it.

good luck and if you need any advice my e-mail is mstone@ups.edu

  • 4 weeks later...
BarbPA Newbie
BarbPA
Posted

I'm very impressed that you want to start a ROCKs group - we first learned about celiac disease last winter and our nine year-old daughter was diagnosed in April '08. Last I checked, the nearest ROCKs chapter for us is in Malvern, PA. (We live in Glenside.) They host pot-lucks, a cup-cake decorating party (sponsored by Pamela's I think), a cookie exchange in December. I've been a bit overwhelmed with the huge learning curve and haven't attended any gatherings, but they sound great. My daugher is interested in meeting other kids with celiac disease, so I think it's time to focus on that. Good luck!

stolly Collaborator
stolly
Posted
  • Author

Hi BarbPA,

We're in Lansdale, so we are starting a Bucks/Montgomery chapter. My daughter is 3.5, but the group will cater to kids of all ages. We recently attended the CHOP Celiac Education Day and met some other families (with kids of all ages) interested in joining. I'll keep you posted...it will probably be late spring, early summer before we organize our first event.

Holly

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. Rogol72
      - Rogol72 replied to HAUS's topic in Gluten-Free Foods, Products, Shopping & Medications
      8

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      @HAUS, I was at an event in the UK a few years back. I remember ringing the restaurant ahead to inquire about the gluten free options. All I wanted was a few gluten free sandwiches, which they provided and they were delicious. The gluten-free bread they used was Warbutons white bread and I remember mentioning it on this site before. No harm in trying...
    2. Scott Adams
      - Scott Adams replied to HAUS's topic in Gluten-Free Foods, Products, Shopping & Medications
      8

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      In the U.S., most regular wheat breads are required to be enriched with certain B-vitamins and iron, but gluten-free breads are not required to be. Since many gluten-free products are not enriched, we usually encourage people with celiac disease to consider a multivitamin. In the early 1900s, refined white flour replaced whole grains, and people began...
    3. Scott Adams
      - Scott Adams replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Inconclusive results

      Keep in mind that there are drawbacks to a formal diagnosis, for example more expensive life and private health insurance, as well as possibly needing to disclose it on job applications. Normally I am in favor of the formal diagnosis process, but if you've already figured out that you can't tolerate gluten and will likely stay gluten-free anyway, I wanted...
    4. JoJo0611
      - JoJo0611 replied to JoJo0611's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      CT with contrast.

      Thank you.
    5. deanna1ynne
      - deanna1ynne replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Inconclusive results

      Thank you all so much for your advice and thoughts. We ended up having another scope and more bloodwork last week. All serological markers continue to increase, and the doc who did the scope said there villous atrophy visible on the scope — but we just got the biopsy pathology report back, and all it says is, “Duodenal mucosa with patchy increased int...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,441
    • Most Online (within 30 mins)
      7,748
    Linda Boxdorfer
    Newest Member
    Linda Boxdorfer
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • Rogol72
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By Rogol72 · Posted

      @HAUS, I was at an event in the UK a few years back. I remember ringing the restaurant ahead to inquire about the gluten free options. All I wanted was a few gluten free sandwiches, which they provided and they were delicious. The gluten-free bread they used was Warbutons white bread and I remember mentioning it on this site before. No harm in trying it once. It's fortified with Calcium and Iron. https://www.warburtonsglutenfree.com/warbs_products/white-loaf/ The only other gluten-free bread that I've come across that is fortified is Schar with Iodized salt, nothing else.
    • Scott Adams
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By Scott Adams · Posted

      In the U.S., most regular wheat breads are required to be enriched with certain B-vitamins and iron, but gluten-free breads are not required to be. Since many gluten-free products are not enriched, we usually encourage people with celiac disease to consider a multivitamin.  In the early 1900s, refined white flour replaced whole grains, and people began developing serious vitamin-deficiency diseases: Beriberi → caused by a lack of thiamin (vitamin B1) Pellagra → caused by a lack of niacin (vitamin B3) Anemia → linked to low iron and lack of folate By the 1930s–40s, these problems were common in the U.S., especially in poorer regions. Public-health officials responded by requiring wheat flour and the breads made from it to be “enriched” with thiamin, riboflavin, niacin, and iron. Folic acid was added later (1998) to prevent neural-tube birth defects. Why gluten-free bread isn’t required to be enriched? The U.S. enrichment standards were written specifically for wheat flour. Gluten-free breads use rice, tapioca, corn, sorghum, etc.—so they fall outside that rule—but they probably should be for the same reason wheat products are.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      Keep in mind that there are drawbacks to a formal diagnosis, for example more expensive life and private health insurance, as well as possibly needing to disclose it on job applications. Normally I am in favor of the formal diagnosis process, but if you've already figured out that you can't tolerate gluten and will likely stay gluten-free anyway, I wanted to at least mention the possible negative sides of having a formal diagnosis. While I understand wanting a formal diagnosis, it sounds like she will likely remain gluten-free either way, even if she should test negative for celiac disease (Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If her symptoms go away on a gluten-free diet, it would likely signal NCGS).        
    • JoJo0611
      CT with contrast.

      By JoJo0611 · Posted

      Thank you. 
    • deanna1ynne
      Inconclusive results

      By deanna1ynne · Posted

      Thank you all so much for your advice and thoughts. We ended up having another scope and more bloodwork last week. All serological markers continue to increase, and the doc who did the scope said there villous atrophy visible on the scope — but we just got the biopsy pathology report back, and all it says is, “Duodenal mucosa with patchy increased intraepithelial lymphocytes, preserved villous architecture, and patchy foveolar metaplasia,” which we are told is still inconclusive…  We will have her go gluten free again anyway, but how soon would you all test again, if at all? How valuable is an official dx in a situation like this?
×
×
  • 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.