Tween Meeting – Virtual

Francie KelleyLeave a Comment

Gather with others to chat and share about life with celiac disease and the gluten-free diet. You can share frustrations and the creative solutions you have developed for living gluten-free in a gluten-filled world.

Contact CeliacKidsConnection@childrens.harvard.edu to RSVP and get the Zoom link.

Directory

Directory Updated 5/27/2020

Many of you have told us that you are having trouble finding gluten-free (GF) food during the pandemic. We have reached out to local businesses to create a directory to find GF food and support small and local businesses

Click Here to Download

If you know of a business that would like to be included, post their information in the comments section and we will reach out to them.

We hope you find this directory useful.

GluTeen Free: Covid-19 Celiac Routine

I’m Abby B, a 10th grader who has had Celiac for two years. I play multiple sports and go to a small private Christian school, now located at my house because of Covid-19. I was diagnosed with Celiac disease when I was in 8th grade, almost two years ago. Since I go to such a small school I am the only one in the high school that has celiac disease and the only one who must eat strictly gluten-free, which is hard because many people and teachers don’t know or remember that I am gluten-free.  

Since Covid-19 has hit it has been a whirlwind for everyone.  As a teenager with celiac disease the virus has made my life easier in some ways, and harder in others. 

It’s been easier because I am eating at home for basically every meal.  That means everything that I eat is controlled. For people who have celiac disease, eating at home in a controlled environment is less stressful and easier. Even though, my Mom would rather eat out every day and gets really tired of making so many meals! It is also easier because I am able to find the right balance of nutrition throughout the day. At school, I am limited to eating only when allowed but at home, I can eat whenever so that I am always energized (which is amazing for me but it drives my mom crazy because she wants us to be hungry at dinner time instead of just eating snacks).  

In other ways, it’s been more challenging because it’s harder and harder to find gluten-free food in the grocery stores. Some of my favorite foods like Barilla pasta or King Arthur’s muffin mix are never sold in the stores anymore. My parents have ordered online and managed to find the foods I need such as baking flour and pasta, but each time the delivery dates take longer and longer and based on my mom’s description of the grocery store, it’s clear many people are buying gluten-free food because the regular things (like pasta) are out. They may not be gluten-free, but they buy it anyway and that has been especially frustrating.  

The good news in all this (especially for my Mom) is that despite the fact that most places are closed, there are some places that are open for takeout and have amazing gluten-free options! Some of my favorite places that we have ordered takeout from are American Flatbread in Portsmouth, NH, Rev Kitchen & Bar in Beverly, Burtons in North Andover, and Chick-Fil-A in Woburn. My parents have been to all of the places and I have come to some of them in the car. They are very aware of the social distancing rules. Everyone wears gloves and masks and you have the ability to pay online so you don’t come in contact with them.  My food is always labeled and in a separate bag or box.  These were some of my favorite places before Covid-19 and it’s helped me feel a sense of ‘real-life’ to order from them.  Plus my mom is happy that she doesn’t have to make dinner every night!

Sure being isolated in your home isn’t fun, but eating can be. I love eating. Since Covid-19 has hit, I have felt much safer about eating because I am able to control what goes in my body, compared to when there might be cross-contact at schools, sports events, or at restaurants that do not observe strict gluten-free rules. I know that having a home-cooked meal at the end of the day has been super helpful.  But it’s also nice to order out every now and then!   I’m sure that all our parents would appreciate it if the gluten-free supplies were better stocked at the stores and someday we all hope a restaurant or two will open up again. I know mine would!

General Meeting – Virtual

Francie KelleyLeave a Comment

Gather with other families. We will talk about our favorite GF foods and where we find them.

Contact CeliacKidsConnection@childrens.harvard.edu to RSVP and get the Zoom link.

Tween Meeting – Virtual

Francie KelleyLeave a Comment

Gather with others to chat and share about life with celiac disease and the gluten-free diet. You can share frustrations and the creative solutions you have developed for living gluten-free in a gluten-filled world.

Contact CeliacKidsConnection@childrens.harvard.edu to RSVP and get the Zoom link.

Thank You Celiac Kids Connection Volunteers

It is Volunteer Appreciation Week! Even in these hectic times, we would like take a moment to thank all the special people who make Celiac Kids Connection great. THANK YOU!!! We would not be who we are without your hard work and dedication.

Celiac Kids Connections relies on our volunteers. There is nothing we do that does not require volunteer effort. Thank you to our

  • Board Members – who oversee the group’s activities and with their families work hard at all of our events.
  • Welcome Families – who connect with families new to celiac disease and the gluten-free diet
  • Bloggers – who make sure this website has the most up-to-date information
  • Mentors – who spend time (even while in quarantine) with their mentees
  • Newsletter writers and editors – who make our newsletter fantastic
  • Event Staff – who make our events run smoothly. Every event requires people to come early to set-up, stay late to clean-up and assist during the event.
  • Vendor Outreach Coordinator – who works with vendors ensuring we have samples for events and welcome baskets
  • Welcome Basket Family – who prepares and ships the welcome baskets
  • Small Group Hosts – who plan and run small group gatherings
  • Teens who complete Green Ribbon Projects – These are special projects that benefit our CKC community.
  • Boston Children’s Hospital Staff – who are generous with their time supporting our activities.

To all of our volunteers, we are grateful for your contributions to Celiac Kids Connection.

Thank you everyone.

Board Meeting

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CANCELLED DUE TO THE COVID 19 VIRUS

The Celiac Kids Connection board meets regularly to plan activities and set goals and objectives for our group. The meeting is held in Conference Room A in the Flashner Conference Center.

All members are welcome to attend.

Celiac Smarts: Recent Developments in Research and Treatment – CANCELLED due to CORONAVIRUS

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Will be rescheduled as a webinar at a future date

An education day with an emphasis on current celiac disease research. Our day includes:

    • Presentations from our BCH Celiac Disease Program Staff
    • Presentations from members of Celiac Kids Connection
    • Lunch conversations on topics of interest such as; 504 Plans, Meal Planning, School Lunches, and Travel
    • AND MUCH MORE!

Kids are welcome. Many of the talks will be suitable for kids and we will have a special kid’s room with games, crafts and celiac themed projects.

 

A GLUTEN-FREE LUNCH WILL BE PROVIDED

 

Note: Doors open at 9:30 am and sessions begin at 10:00 am. 

GluTeen Free: How I go to School Dances without Feeling Awkward

By Abby Baird

I’m Abby B, a 10th grader who has had celiac disease for two years. I play multiple sports and go to a small private Christian school. I got diagnosed with celiac disease when I was in 8th grade and have had it for almost two years now. Since I go to such a small school I am the only one in the high school that has celiac disease and the only one who must eat strictly gluten-free, which is hard because many people and teachers don’t know or remember that I am gluten-free.  

One thing that is challenging is going to school-sponsored dances. Since my school is so small and I am the only one with celiac disease almost every time I end up bringing in my own food in a brown paper bag. Now I don’t know about you but going to a school dance in a fancy dress and taking a bunch of pictures with your friends while carrying a brown paper bag isn’t very fun. I mean who wants to be outshined by a brown paper bag?? Definitely not me! It isn’t easy to be the odd person out, especially in high school when it’s all about fitting in. 

This past dance that we had at my school, instead of going the brown paper bag route, I went and talked to the Dean who is in charge of overseeing the event. I let him know that I had celiac disease and that I would not be able to eat any of the provided food.  He asked me a few questions and looked at the catering menu. Then, instead of asking if I could just bring my own food, he made sure that when I got to the dance there would be special Gluten-Free food just for me. Just something as simple as talking to your school leadership and asking if they can provide food for you can work. Another option that I have done in the past is to have the food sent beforehand. One year when my school could not provide food for me, my mom made a meal for me and gave it to one of the chaperones. The chaperone, in turn, put my meal out next to the catered meal.  Come dinner time I had something that I could eat that was already all set up for me and I didn’t have to carry the infamous brown paper bag to the dance. 

It’s not easy to have a dietary issue where you are constantly having to do special things just so that you can eat. It can easily get to the point where you feel out of place. Sometimes the best option is to just talk to the person who is in charge of it and sometimes it just requires a bit of extra planning.