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Lizzy_B_Gluten_Free

Local Celiac parents?

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I would start with your GI Dr. who diagnosed your kiddo or your local children's hospital. They usually know what support groups there are around. You can also try checking out Facebook for local groups.

 

We're in Ohio and there is one called ROCKS here (Raising Our Celiac Kids) but I don't know if they are just local or part of a national group.

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lolz - i got married in blairstown ('where hope is only one exit away', lolz)  are you in pa or nj?  close to hackettstown nj?  there is an awesome restaurant called 'mama's baci' that offers an EXTENSIVE gluten free menu and they have a dedicated kitchen.  you can even get sauces, bread, pasta, etc to go if you're in a hurry.  never have gotten sick there.  nice people - they might could steer you in the right direction.  or you could contact the hospital there and see if there's a support group - i know they teach classes for safe food handling there at hackettstown hospital.  i have a few friends who live in stroudsburg (east) i can ask, too, if you are on the pa side of the delaware :)


arlene

misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010

 

only YOU can prevent forest fires - smokey t. bear

 

have a nice day :)

Celiac.com - Celiac Disease Board Moderator

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You can also ask your child's school nurse.  That's how I found my first mom of a celiac child.  The nurse had to get her permission and then put us in contact.  Same nurse also offered to ask the entire district (it's really large) through the nurses.


Angela

Undiagnosed, but I'm positive that I'm the genetic link to celiac for my kids.  Gluten Free in solidarity of my girls!

Kid 1 (9 y/o girl) - DX celiac via blood in 9/2013 (age 7.5).  Negative biopsy in 10/2013.

Kid 2 (5 y/o boy) - DX as "latent celiac" via blood in 9/2013 (age 3.5).  Negative biopsy in 10/2013.

Kid 3 (3 y/o girl) - DX celiac via blood in 8/2013 (age 1.5) and 9/2013. 

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Wow, small world. I went to Blair for high school!  I still know lots of people (faculty) there and would be happy to ask around to see if they have any teens with celiac. Let me know if you'd like me to do that.

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15 hours ago, notme! said:

lolz - i got married in blairstown ('where hope is only one exit away', lolz)  are you in pa or nj?  close to hackettstown nj?  there is an awesome restaurant called 'mama's baci' that offers an EXTENSIVE gluten free menu and they have a dedicated kitchen.  you can even get sauces, bread, pasta, etc to go if you're in a hurry.  never have gotten sick there.  nice people - they might could steer you in the right direction.  or you could contact the hospital there and see if there's a support group - i know they teach classes for safe food handling there at hackettstown hospital.  i have a few friends who live in stroudsburg (east) i can ask, too, if you are on the pa side of the delaware :)

Thanks, yes we've been to Mama's. It's a little far away, we are on the PA side. Yes please ask your friends in stroudsburg, that's really close to us.  Thanks again!

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11 hours ago, africanqueen99 said:

You can also ask your child's school nurse.  That's how I found my first mom of a celiac child.  The nurse had to get her permission and then put us in contact.  Same nurse also offered to ask the entire district (it's really large) through the nurses.

I will try that. I had to get permission from the principle for the teacher to give me the first names of the kids in his class so I could send out invites for his birthday.  So, they're a bit weird about that stuff.

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It's not about being weird, it's a privacy thing. Schools aren't allowed to disclose personal information about other students esp. if it's in relation to a disability (which Celiac is coved by).  I would look at other areas before I would ask the school for that info. Seems yours takes students personal information seriously so I would doubt they would agree to the above it sounds. 

 

A quick google search turned this up. No idea where it is in relation to you but I'm sure you can turn up something similar in your area.

 

https://www.facebook.com/NYNJROCK

 

 

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16 hours ago, StephanieL said:

I would start with your GI Dr. who diagnosed your kiddo or your local children's hospital. They usually know what support groups there are around. You can also try checking out Facebook for local groups.

 

We're in Ohio and there is one called ROCKS here (Raising Our Celiac Kids) but I don't know if they are just local or part of a national group.

Thanks, I was able to find a ROCKS in Blairstown. Not sure if they're still active but I will contact them today.  That would be great if they are! Thank you!

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19 hours ago, anyana said:

Wow, small world. I went to Blair for high school!  I still know lots of people (faculty) there and would be happy to ask around to see if they have any teens with celiac. Let me know if you'd like me to do that.

my dad used to threaten to send me to blair academy when i skipped school, lolz - i had a friend who actually went there and she got into waaaayy more mischief than i did in west milford ;)


arlene

misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010

 

only YOU can prevent forest fires - smokey t. bear

 

have a nice day :)

Celiac.com - Celiac Disease Board Moderator

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lizzy, my stroudsburg friend is out of town on business, but when he gets back he is going to contact someone who he thinks has a kids' group.  he and his wife have 7 or so kids (stopped counting at 5 lolz) and they are vegan, so he might have some other local resources for your son.   i learned of some other celiacs/ncgi people just randomly (church, lions club,  grandson's little league, etc) by attending local functions.  if i know someone with a gluten problem is going to attend and there will be food served, i make something 'safe' to share with my gluten-free buddies :)  glad you found that blairstown group and when i find anything further, i'll post it.  give your kid a ((hug )))  from me.  it's tough enough to manage being an adult, poor guy!  


arlene

misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010

 

only YOU can prevent forest fires - smokey t. bear

 

have a nice day :)

Celiac.com - Celiac Disease Board Moderator

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14 hours ago, notme! said:

lizzy, my stroudsburg friend is out of town on business, but when he gets back he is going to contact someone who he thinks has a kids' group.  he and his wife have 7 or so kids (stopped counting at 5 lolz) and they are vegan, so he might have some other local resources for your son.   i learned of some other celiacs/ncgi people just randomly (church, lions club,  grandson's little league, etc) by attending local functions.  if i know someone with a gluten problem is going to attend and there will be food served, i make something 'safe' to share with my gluten-free buddies :)  glad you found that blairstown group and when i find anything further, i'll post it.  give your kid a ((hug )))  from me.  it's tough enough to manage being an adult, poor guy!  

Thank you. I didn't hear back from the Blairstown group yet.  It was a 7 year old post I found about them, so they might not be active.  

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