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

Anyone Here Rock Leader Or Been To A Rock Event?


cruelshoes

Recommended Posts

cruelshoes Enthusiast

My son is 8.5. He has adjusted well to the diet since being diagnosed 1.5 years ago. Still, I would love it if he could meet some other kids with celiac. All the ROCK groups in the state are quite a distance from us, so I am considering starting my own group. Are any of you ROCK leaders, or have you ever been to a ROCK event? Did you and your child find them enjoyable? What kind of activities did you do? Would you say that it has been a positive experience for your child?

I am not sure if I am ready to commit to starting my own group. If you are a ROCK leader, would you tell me what your time commitment is? WIth working full time and trying to keep up with 3 kids, I am already pretty crazy.

Thanks for any opinions!


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



Celiac.com Sponsor (A8-M):



flagbabyds Collaborator

Our ROCK group started off as my friend leading it and planning the events, (she was 11 at the time) and then she moved to Tahoe so we had various people tale over it. We had one really great woman running it and planning the events, but then she died unexpectadly sooooooo my mom ran it for a while, but i got too old for it, so i started the TAG (teens against gluten) national support group that branched off of ROCK.

Our normal rock meetings were usually picnics at different parks in the area, everyone would bring a dish and we would have soccer balls and footballs and the kids would play and eat while the parents talked.

Now our ROCK group is much more of an online community, it's a Yahoo group and most of the contact is through e-mail and we haven't had many meetings, especially since i stopped being an active member in the group/

It shouldn't take that much time, if you create a Yahoo group or some other website group, then all the members can message each other back and forth, and that helps.

celiac-mommy Collaborator
My son is 8.5. He has adjusted well to the diet since being diagnosed 1.5 years ago. Still, I would love it if he could meet some other kids with celiac. All the ROCK groups in the state are quite a distance from us, so I am considering starting my own group. Are any of you ROCK leaders, or have you ever been to a ROCK event? Did you and your child find them enjoyable? What kind of activities did you do? Would you say that it has been a positive experience for your child?

I am not sure if I am ready to commit to starting my own group. If you are a ROCK leader, would you tell me what your time commitment is? WIth working full time and trying to keep up with 3 kids, I am already pretty crazy.

Thanks for any opinions!

If you want to send me an personal message with your contact info, I can pass it along to our ROCK leader here in Vancouver (WA), I know she was very involved with the ROCK group in Seattle before they moved down here, she would be a great resource for you.

-Rachelle

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,198
    • Most Online (within 30 mins)
      7,748

    Seeeye
    Newest Member
    Seeeye
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Bev in Milw
      Scott is correct….Thank you for catching that!      Direct link for info  of fillers.    http://www.glutenfreedrugs.com/Excipients.htm Link is on 2nd page  of www.glutenfreedrugs.com   Site was started by a pharmacist (or 2) maybe 15-20 yrs ago with LAST updated in  2017.  This makes it’s Drug List so old that it’s no longer relevant. Companies & contacts, along with suppliers &  sources would need to be referenced, same amount effort  as starting with current data on DailyMed      That being said, Excipient List is still be relevant since major changes to product labeling occurred prior ’17.           List is the dictionary that sources the ‘foreign-to-us’ terms used on pharmaceutical labels, terms we need to rule out gluten.    Note on DailyMed INFO— When you look for a specific drug on DailyMed, notice that nearly all of companies (brands/labels) are flagged as a ‘Repackager’… This would seem to suggest the actual ‘pills’ are being mass produced by a limited number of wholesaler suppliers (esp for older meds out of  patent protection.).      If so, multiple repackager-get  bulk shipments  from same supplier will all  be selling identical meds —same formula/fillers. Others repackager-could be switching suppliers  frequently based on cost, or runs both gluten-free & non- items on same lines.  No way to know  without contacting company.     While some I know have  searched pharmacies chasing a specific brand, long-term  solution is to find (or teach) pharmacy staff who’s willing help.    When I got 1st Rx ~8 years ago, I went to Walgreens & said I needed gluten-free.  Walked  out when pharmacist said  ‘How am I supposed  to know…’  (ar least he as honest… ). Walmart pharmacists down the block were ‘No problem!’—Once, they wouldn’t release my Rx, still waiting on gluten-free status from a new supplier. Re: Timeliness of DailyMed info?   A serendipitous conversation with cousin in Mi was unexpectedly reassuring.  She works in office of Perrigo, major products of OTC meds (was 1st to add gluten-free labels).  I TOTALLY lucked out when I asked about her job: “TODAY I trained a new full-time employee to make entries to Daily Med.’  Task had grown to hours a day, time she needed for tasks that couldn’t be delegated….We can only hope majorities of companies are as  conscientious!   For the Newbies…. SOLE  purpose of  fillers (possible gluten) in meds is to  hold the active ingredients together in a doseable form.  Drugs  given by injection or as IV are always gluten-free!  (Sometimes drs can do antibiotics w/ one-time injection rather than 7-10 days of  pills .) Liquid meds (typically for kids)—still read labels, but  could be an a simpler option for some products…                 
    • Ginger38
      So I recently had allergy testing for IGE antibodies in response to foods. My test results came back positive to corn, white potatoes, egg whites. Tomatoes, almonds and peanuts to name a few.  I have had obvious reactions to a few of these - particularly tomatoes and corn- both GI issues. I don’t really understand all this allergy versus celiac stuff. If the food allergies are mild do I have to avoid these foods entirely? I don’t know what I will eat if I can’t  have corn based gluten free products 
    • Kris2093u4
      Geography makes a difference.  I'm in the West and Trader Joe's gluten-free bread tastes great and is a better price than most gluten-free breads sold elsewhere in my area.  
    • JForman
      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
    • Fayeb23
      I’ve recently had bloods test due to fatigue. Iron was found to be low Serum ferritin level 4 ug/L so doctor sent for Coeliac test. Results have come back TTG ABS NUMERICAL > 250.0 U/mL is this a high reading? Am not waiting a Gastroenterology referral but this could take 10 weeks! This is all total new to me, didn’t think for a second I would have coeliac disease. Been advised not to change diet until seen by specialist 
×
×
  • Create New...