Sophomore establishes celiac support group


Claire Seinsheimer

Huff hopes to support other children with celiac and to educate others about the disease.

SJ Lasley, Staff Writer

When sophomore Claire Huff found herself unable to join a support group upon her diagnosis with celiac disease, she decided to take matters into her own hands.

Celiac is a disease that affects the small intestine during digestion, causing an enzyme to convert gluten into a harmful chemical. This chemical then causes an immune system response that inflames the small intestine and causes pain and nausea, among other symptoms.

“My entire eighth grade year I felt sick after every meal,” Huff said. “Not knowing why stressed me out, and my diagnosis was a weight lifted off my shoulders.”

Upon her diagnosis, Huff was eager to join a support group and find as many resources as possible. She and her family searched online for local support groups only to discover that the Houston area website had not been updated since 2003, and the only other support group in Texas had shut down just weeks before her diagnosis.

“Joining a support group wasn’t an option for me when I really needed it,” Huff said. “I knew there were other groups in other big cities, so this year I figured I would work to establish one here in Houston.”

Huff’s group will be sponsored by the Gluten Intolerance Group, a nationwide movement to raise awareness for those who live gluten-free: from labeling gluten-free foods with a certified GF logo, to sanctioning future support groups in locations across the United States.

The Houston group will appeal to ages from newborns to teens, providing outings and learning opportunities in which members can bond over their similar experiences. The group is open to those affected by celiac, gluten intolerances and gluten allergies or people who live gluten-free by choice.

“Since celiac disease is a lifelong disease that requires a complete diet change, it can be hard for children and teens to navigate these new challenges,” Claire’s mother, Shelley Huff, said. “It’s great to have other young gluten-free people to share experiences, frustrations and tips to live as normally as possible.”

In addition to catering to gluten-free youth, the group will focus their efforts on educating others on what it means to have celiac disease or otherwise live gluten-free.

“Before Claire’s diagnosis, I only knew one person with celiac, and I wasn’t really sure what it was,” Huff’s classmate, Katie Shelburne, said. “Most people know what gluten-free means, but I don’t think they understand things like the consequences of eating gluten when you have celiac or how easy it is to accidentally contaminate foods with gluten.”  

In order to raise awareness for the support group, a Texas-based edition of the Generation GF magazine recently featured Huff’s contact information so more people can get in touch with her. The magazine is distributed in local grocery stores, pediatric offices and bakeries.

Huff took the initiative to be the spokesperson for the Texas chapter of the Generation GF support groups. The other leaders are celiac-affected adults or adults whose children have celiac.

“I’m the first kid to ever go through with making my own group,” Huff said. “I got on a conference call with leaders of other groups, and they were all excited for me. Everyone has to start somewhere.”