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

Local Celiac parents?


Lizzy-B-Gluten-Free

Recommended Posts

Lizzy-B-Gluten-Free Newbie

Is there a way to find out if any members here are in my area? Stroudsburg, PA, Lehigh valley, Blairstown NJ?  My 7 year old doesn't know any other kids who have celiac and he feels pretty alone.


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



Celiac.com Sponsor (A8-M):



StephanieL Enthusiast

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.

notme Experienced

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 :)

africanqueen99 Contributor

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.

anyana Apprentice

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.

Lizzy-B-Gluten-Free Newbie
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!

Lizzy-B-Gluten-Free Newbie
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.


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



Celiac.com Sponsor (A8-M):



StephanieL Enthusiast

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.

 

Open Original Shared Link

 

 

Lizzy-B-Gluten-Free Newbie
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!

notme Experienced
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 ;)

notme Experienced

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!  

Lizzy-B-Gluten-Free Newbie
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.  

Archived

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

  • 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. - olivia11 replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      26

      My journey is it gluten or fiber?

    2. - olivia11 replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      26

      My journey is it gluten or fiber?

    3. - olivia11 replied to olivia11's topic in Gluten-Free Foods, Products, Shopping & Medications
      4

      suggest gluten free food

    4. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      26

      My journey is it gluten or fiber?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,790
    • Most Online (within 30 mins)
      7,748

    Marinaharlow
    Newest Member
    Marinaharlow
    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

    • olivia11
      This is really helpful  I had not considered sugar alcohols or inulin as triggers. Thanks for the practical baking tips too color coding and baking G F first makes a lot of sense. This is really helpful  I had not considered sugar alcohols or inulin as triggers. Thanks for the practical baking tips too color coding and baking G F first makes a lot of sense. This is really helpful  I had not considered sugar alcohols or inulin as triggers. Thanks for the practical baking tips too color coding and baking G F first makes a lot of sense.   You are not confusing yourself  you have got it right. Thiamax (TTFD) plus a B-complex, and if you want benfotiamine, the Life Extension formula covers that at ~100 mg.
    • olivia11
      High fiber can definitely cause sudden GI distress especially if it’s a new addition but accidental gluten exposure can feel similar. Keeping a simple food/symptom log and introducing new gluten-free foods one at a time can really help you spot the pattern. This is really helpful  I had not considered sugar alcohols or inulin as triggers. Thanks for the practical baking tips too; color-coding and baking gluten-free first makes a lot of sense. This is really helpful  I had not considered sugar alcohols or inulin as triggers. Thanks for the practical baking tips too; color-coding and baking gluten-free first makes a lot of sense. This is really helpful  I had not considered sugar alcohols or inulin as triggers. Thanks for the practical baking tips too; color-coding and baking gluten-free first makes a lot of sense. This is really helpful  I had not considered sugar alcohols or inulin as triggers. Thanks for the practical baking tips too; color-coding and baking gluten-free first makes a lot of sense.
    • olivia11
      Thanks for asking  I’m mainly looking for gluten-free staples and snacks. Any recommendations for brands or go-to items would be appreciated.
    • xxnonamexx
      sorry a bit confused so I should take my B complex along with Objective Nutrients Thiamax for TTFD but what about a Benfotiamine to take. The Life extensions contains Benfotiamine and Thiamine together or im confusing myself. I am trying to see if I take Thiamax what should I take for Benfotiamine. Thanks EDITING after further research I see ones water soluble ones fat soluble. So I guess 100MG as you suggested of Life Extension contains Benfotiamine and Thiamine Hydrochloride. and the Objective Nutrients Thiamax contains TTFD.     would work for me.
    • Rogol72
      I put on over 12kg by eating protein with every meal, 3 to 5 times a day. Eggs, Chicken, Tuna, Turkey etc. I stay away from too much red meat as it can be inflammatory. Scott is correct. I've come across a bunch of Coeliac PT's on Tiktok and Instagram. They all say the same thing, the key is getting enough protein and consistency.
×
×
  • 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.