Celiac Awareness Month – Emma Sullivan’s Celiac Journey

By Francie Kelley, Executive Director, Celiac Kids Connection

Recently I spoke with Jessica Sullivan about her incredible daughter Emma. Emma Sullivan is 11 years old and they live in New Hampshire. She is very creative; enjoying drawing and artistic pursuits. She is also a cheerleader and she LOVES animals.

Emma has been living with celiac disease for 6 years. In addition, she has other food allergies and dietary restrictions. In spite of all her restrictions, Emma is resilient. She is empowered by her disease not held back by it. She is great about advocating for herself but admits it did take some time for her to become comfortable doing this.

The hardest part about living with dietary restrictions for Emma has been the social impact. She has to plan ahead for going out with friends, birthday and holiday celebrations. It is particularly hard when someone brings treats to school and there is no advance notice.

A bonus to having dietary restrictions is that the whole family is eating healthier. They think a lot more about food and of course spend a lot of time reading labels. This is been really eye-opening to see how the “same” food item can have such variations in ingredients.

During this celiac awareness month Emma and her family want to bring light to celiac disease by spreading the word. To this end, they are sharing daily facts about celiac disease on social media. You can find them on Instagram by searching for #giveglutenabootin.

There are 2 major things that they wish to share. First, they want people to understand that celiac disease is not an allergy. Second, when you bring food to an event for kids remember the kids with special diets. People bring treats for sharing to school, sports or church events. They do this as a kindness. They do this in order for the kids to celebrate. But when you bring treats there will be kids in the group who have celiac disease, allergies or other dietary restrictions. They are often the quiet kid in the back who is afraid to speak up and advocate for themselves or simply do not want the person who brought the treat to feel bad. So the next time you are bringing food to share with kids, remember these kids with special diets.

2 Comments on “Celiac Awareness Month – Emma Sullivan’s Celiac Journey”

  1. Emma is a inspiration, she is a strong young woman. I love how she shared her personal story to help educate others.

  2. Emma is an extraordinary young lady. She is well educated and motivated to help educate the world on Celiac disease… more importantly she wants to help others better understand how the public can always include everyone in their food/treat choices for social gatherings for kids with this disease! She is determined to make a difference overall and by advocating for her specific individualized self care, she understands that she will ultimately take care of others as well, so that no one feels left out or left behind…

Leave a Reply

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.