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

Looking for Support Group

eeyv

Recommended Posts

eeyv Rookie
eeyv
Posted

I am looking for a group of tweens/teens with Celiac for my daughter to join. She is currently 11 yo and diagnosed with Celiac Disease 6 months ago. She is responding very well to the gluten-free lifestyle, but social situations are challenging. It would be terrific for her to have a group of people her age to share experiences, stories and gluten-free-strategies. We live in the Atlanta area.

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

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted

I do not know of a group near Atlanta, but I would recommend looking into a celiac camp for this summer.  She might meet lots of "local" kids.  There is one in Warm Springs, GA.  Starts right after school gets out.   Here is more information:

Open Original Shared Link

I am old, but I wanna go to celiac camp!   I do go to Lake Lanier where my family has a lake house, but I still have to think about food.....ugh!  

 

 

kareng Grand Master
kareng
Posted

You might check with the Children's Hospital.  Some of them have support/social groups for kids with food allergies.  I would think the issues would be similiar to Celiac

StephanieL Enthusiast
StephanieL
Posted

There is a group called "ROCK" Raising Our Celiac Kids with locations around the country. 

  • 2 weeks later...
eeyv Rookie
eeyv
Posted
  • Author
On 2/27/2017 at 2:02 PM, cyclinglady said:

I do not know of a group near Atlanta, but I would recommend looking into a celiac camp for this summer.  She might meet lots of "local" kids.  There is one in Warm Springs, GA.  Starts right after school gets out.   Here is more information:

Open Original Shared Link

I am old, but I wanna go to celiac camp!   I do go to Lake Lanier where my family has a lake house, but I still have to think about food.....ugh!  

 

 

Thank-you so much. I'll check it out!

eeyv Rookie
eeyv
Posted
  • Author
On 2/28/2017 at 2:16 PM, StephanieL said:

There is a group called "ROCK" Raising Our Celiac Kids with locations around the country. 

Thanks so much. I'll take a look.

On 2/27/2017 at 6:45 PM, kareng said:

You might check with the Children's Hospital.  Some of them have support/social groups for kids with food allergies.  I would think the issues would be similiar to Celiac

Terrific idea. I will look into this.

 

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. Charlie1946
      - Charlie1946 replied to Charlie1946's topic in Related Issues & Disorders
      47

      Severe severe mouth pain

      Hi everyone, I'm still trying to figure out how to each message individually. I saw one with some information on sebaceous hyperplasia but now I can't find it. I appreciate you all so much for all your responses and advice! God bless! Hi everyone, I'm still trying to figure out how to each message individually. I saw one with some information on sebaceous...
    2. Charlie1946
      - Charlie1946 replied to Charlie1946's topic in Related Issues & Disorders
      47

      Severe severe mouth pain

      @trents thank you! I have only been taking 20mg 1x a day. Maybe I need to increase it.
    3. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      3

      New issue

      Nope its just me because they can eat wheat and when we use same pans I found out last year thanks to you guys and the autoimmune website im learning,we are not to share though clean, same with sponge. I just wish doctors understood. I am with new gi and new pcp but im falling apart because blood work is fabulous.Im so ANGERY.I have reached out to my local...
    4. knitty kitty
      - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      44

      My journey is it gluten or fiber?

      If you haven't noticed a difference yet, bump up your Thiamax. Add in another Thiamax with breakfast and lunch. Increase the NeuroMag as well. You can add in another Benfotiamine, too. Thiamine is safe and nontoxic even in high doses. Taking more is fine. I had to bump mine up several times when first starting. It's a matter of finding what...
    5. knitty kitty
      - knitty kitty replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      13

      Insomnia help

      Hello, @hjayne19, About half of the people with Celiac disease react to the protein Casein in dairy the same as to gluten with the inflammation and antibodies and all. Reacting to Casein is not the same as lactose intolerance nor a dairy allergy. Damaged villi are incapable of producing lactAse, the enzyme that digests lactOse, the sugar in dairy....
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,102
    • Most Online (within 30 mins)
      7,748
    Dawn74
    Newest Member
    Dawn74
    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

    • Charlie1946
      Severe severe mouth pain

      By Charlie1946 · Posted

      Hi everyone, I'm still trying to figure out how to each message individually. I saw one with some information on sebaceous hyperplasia but now I can't find it. I appreciate you all so much for all your responses and advice! God bless! Hi everyone, I'm still trying to figure out how to each message individually. I saw one with some information on sebaceous hyperplasia but now I can't find it. I appreciate you all so much for all your responses and advice! God bless! Hi everyone, I'm still trying to figure out how to each message individually. I saw one with some information on sebaceous hyperplasia but now I can't find it. I appreciate you all so much for all your responses and advice! God bless! Hi everyone, I'm still trying to figure out how to each message individually. I saw one with some information on sebaceous hyperplasia but now I can't find it. I appreciate you all so much for all your responses and advice! God bless! Hi everyone, I'm still trying to figure out how to each message individually. I saw one with some information on sebaceous hyperplasia but now I can't find it. I appreciate you all so much for all your responses and advice! God bless!
    • Charlie1946
      Severe severe mouth pain

      By Charlie1946 · Posted

      @trents thank you! I have only been taking 20mg 1x a day. Maybe I need to increase it.
    • Jmartes71
      New issue

      By Jmartes71 · Posted

      Nope its just me because they can eat wheat and when we use same pans I found out last year thanks to you guys and the autoimmune website im learning,we are not to share though clean, same with sponge. I just wish doctors understood. I am with new gi and new pcp but im falling apart because blood work is fabulous.Im so ANGERY.I have reached out to my local representative, in Stanislaus but its just weekly stuff.Im going to need to physical go down there.Any recommendations on what to say and do because this is absolutely ridiculous. If I didn't have my husband though we are really hurting with one income, I would absolutely be one of the homeless population. Thats alarming begging to be heard about a diagnosis that was given as an adult and dealing with this, medical needs to stick to patients regardless of switching insurance or doctor. 
    • knitty kitty
      My journey is it gluten or fiber?

      By knitty kitty · Posted

      If you haven't noticed a difference yet, bump up your Thiamax.  Add in another Thiamax with breakfast and lunch.  Increase the NeuroMag as well.  You can add in another Benfotiamine, too.   Thiamine is safe and nontoxic even in high doses.  Taking more is fine. I had to bump mine up several times when first starting.  It's a matter of finding what works for you.  Everyone is different.   Stick with it.  Some of the health improvements are very subtle and gradual.   Keep going!  You're doing great!
    • knitty kitty
      Insomnia help

      By knitty kitty · Posted

      Hello, @hjayne19, About half of the people with Celiac disease react to the protein Casein in dairy the same as to gluten with the inflammation and antibodies and all.  Reacting to Casein is not the same as lactose intolerance nor a dairy allergy.  Damaged villi are incapable of producing lactAse, the enzyme that digests lactOse, the sugar in dairy.  When the villi grow back, the villi can resume making lactase again.  I react to casein. Keep in mind that part of the autoimmune response to gluten and casein is the release of histamine.  Histamine causes inflammation, but it is also powerful excitory neurotransmitter, causing heightened mental alertness.  Histamine release is what causes us to wake up in the morning.  Unfortunately, excessive histamine can cause insomnia.  Our bodies can make histamine, but foods we eat contain different amounts of histamine, too.  Our bodies can clear a certain amount of histamine, but if overwhelmed, chronic high histamine levels can keep inflammation going and cause other health problems.   I got very weary of playing Sherlock Holmes trying to deduce what I was reacting to this week, so I adopted the low histamine version of the Autoimmune Protocol diet, a Paleo diet designed by a doctor with Celiac, Dr. Sarah Ballantyne.  Her book, The Paleo Approach, has been most helpful.   The low histamine AIP diet cuts out lots of foods that are known to be irritating to the digestive tract.  After a few weeks, when my system was calmer and healing, I could try adding other foods to my diet.  It was much easier starting with safe foods, adding one thing at a time, and checking for reactions than trying to figure out what I was reacting to with so many variables.  I learned to recognize when I had consumed too much histamine from different combinations of foods.  Everyone is different and can tolerate different amounts of histamine in their food.  B Vitamins help us make enzymes that break down histamine.  Vitamin D helps regulate and calm the immune system.  Supplementing with Thiamine helps prevent mast cells from releasing histamine.  Keeping a food-mood-poo'd journal helps identify problematic foods.   I hope you will consider trying the AIP diet.
×
×
  • 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.