Jump to content

  • 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):

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. Scott Adams
      - Scott Adams replied to ThomasA55's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      12

      Iron loss and potential celiac.

      These articles may be helpful:
    2. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Dermatitis Herpetiformis
      5

      Skin issues

      I went to ER on the 30th because I didn't want to wait and saw dr at desk for intake. I went for NOTHING!. ER Dr was very nice but made it seem as if I was a nut case rater than coming in for real issues calmly explaining its staph! Staph, by look no blood test, no skin test. No looking in my nose and throat was given a prescription for jock cream and some...
    3. N Young
      - N Young posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Frustrated with Providers

      I have been Gluten Free for 25 years and havent eaten gluten knowingly during that time. Such a rocky life, I have had issues since I was 16 when physicians stated I needed to see a psychiatrist. I am now 70 years old. I also had Dermatitis herpetiformis. I had negative tests on biopsy, blood test etc but no doctor mentioned that I needed to do a gluten...
    4. trents
      - trents replied to ThomasA55's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      12

      Iron loss and potential celiac.

      "Risk free genetically"? Very low risk, actually. But, we are still learning about the genetics of celiac disease. Speaking of milk, some studies show that CMP (Cow's Milk Protein) can damage the small bowel villi like celiac disease does. Also, some meds (NSAIDS, Olmesartan - a blood pressure med) and some infections can also blunt SB villi.
    5. trents
      - trents replied to MicG's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Test interpretations

      @Aretaeus Cappadocia! The post you were looking for about omeprazol acting as an anti-inflammatory/immunosuppressant was made (yesterday, I believe) by knitty kitty. Current guidelines for the gluten challenge prior to an endoscopy/biopsy of the small bowel is the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat flour...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,116
    • Most Online (within 30 mins)
      10,442
    DiDi53
    Newest Member
    DiDi53
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Scott Adams
      Iron loss and potential celiac.

      By Scott Adams · Posted

      These articles may be helpful:    
    • Jmartes71
      Skin issues

      By Jmartes71 · Posted

      I went to ER on the 30th because I didn't want to wait and saw dr at desk for intake. I went for NOTHING!. ER Dr was very nice but made it seem as if I was a nut case rater than coming in for real issues calmly explaining its staph! Staph,  by look no blood test, no skin test. No looking in my nose and throat was given a prescription for jock cream and some pills ! I made the mistake of saying Im waiting on Infectious disease. She asked how did I get referral and I said I did it online.The next day I checked the status and it was denied! I did get  a referral to the dermatology office i went to last year that over charged me and did a biopsy on me stating inconclusive! I went to another dermatologist and he stated I should see Infectious disease at place i put in referral. With that I contacted that dermatologist and waiting to see if he thinks dermatology or Infectious disease is the route.I do have appointment for dermatology next week.Until then i did purchase Zahler paraGuard advance intestinal  flora support  from Sprouts. Im also very alarmed that the fact celiac isn't addressed properly infact its downplayed. When I had my son tested for HLA-DQ2 and it came out positive because he is eating everything and he is extremely skinny but he isn't dealing with severe diagestive issues because thats all he knows NOW or yet because he is still young 21.I too didn't know any difference when i was that age because thats all we know.Life changes will get him in latter years im afraid because what im dealing with.That scares me.The specialist we went to was only about congestion he is getting.He is getting congestion because he is eating what he isn't supposed too! Zero talk about celiac and HLA-DQ2 positive. Only talk was he is congested because we live in the Valley! They wanted to do surgery! I did write again to our district leader considering when I did call, the guy stated he knew all about celiac. I really wanted to tell him NO YOU DON'T but held my tongue. For my skin sores the cream given didn't do anything because ive also had in past.Ive been putting liquid vitamin c on it and taking vitamins which is making a little difference just with the last few days of doing.
    • N Young
      Frustrated with Providers

      By N Young · Posted

      I have been Gluten Free for 25 years and havent eaten gluten knowingly during that time.   Such a rocky life, I have had issues since I was 16 when physicians stated I needed to see a psychiatrist. I am now 70 years old. I also had Dermatitis herpetiformis. I had negative tests on biopsy, blood test etc but no doctor mentioned that I needed to do a gluten challenge. I went on an elimination diet and found relief on the Dermatitis within a month. I have no doubt that I am celiac and very sensitive now. Now my issue is that I changed physicians due to retirement and he performed a blood test and included a celiac test. I was very upset because I did not request the test and had not been eating gluten for 25 years. Of course the test was negative.  My question - Will this cause me any issues with health treatment if my records now have that I dont have celiac? I like this physician and I am appalled that he performed the test. (he told me his brother is also celiac).  I feel that we are still living in the dark ages. I dont want to cause problems because I rarely need health treatment since I live a fairly healthy lifestyle.  Since I am at this age and been through so much getting to this point am I being unreasonable for being upset? I am not expecting to see this physician for another 2 months.  Need to know if I can expect issues with future treatments. How can a physician not know about the gluten challenge this day and age?   
    • trents
      Iron loss and potential celiac.

      By trents · Posted

      "Risk free genetically"? Very low risk, actually. But, we are still learning about the genetics of celiac disease. Speaking of milk, some studies show that CMP (Cow's Milk Protein) can damage the small bowel villi like celiac disease does. Also, some meds (NSAIDS, Olmesartan - a blood pressure med) and some infections can also blunt SB villi.
    • trents
      Test interpretations

      By trents · Posted

      @Aretaeus Cappadocia! The post you were looking for about omeprazol acting as an anti-inflammatory/immunosuppressant was made (yesterday, I believe) by knitty kitty. Current guidelines for the gluten challenge prior to an endoscopy/biopsy of the small bowel is the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat flour bread) for at least two weeks prior to the day of the procedure. @Ginarwebb, your tTG-IGA >250 would seem to be a pretty high test result, though to be sure of that statement, I would need to see what the lab used for a "normal" range. Do you have that number also? Different labs use different scales. There isn't an industry standard yet. The tTG-IGA is the centerpiece of celiac blood antibody testing. Your ENDOMYSIAL ANTIBODY SCR (IGA) W/REFL TO TITER (aka, "EMA") is positive as well. This is an older test, and a relative expensive one, compared to the tTG-IGA which has largely replaced. But the EMA is still ordered by some docs and is highly reliable. That both of them agree in your case and this is strong evidence that you have celiac disease. Concerning the ENDOMYSIAL ANTIBODY TITER (aka, "total IGA") being high, there are two things of importance. First, it tells us you are not "IGA deficient" such that your tTG-IGA test result is reliable. Second, a high total IGA test score can suggest other health concerns, some of which are serious. It can also mean nothing. Talk to your doctor about this. I would also suggest you research the implications of a high total IGA. In addition to IGA celiac diagnostic tests there are also IGG tests which are handy when total IGA is sub normal.  Here is an article outlining the various tests that can be run for diagnosing celiac disease:  
×
×
  • Create New...