Guide for Talking to Family About Celiac Testing

in Celiac
Published: August 15, 2012

The following information on the importance of celiac disease testing in famiies is courtesy of the nonprofit Beyond Celiac.

Having a relative with celiac disease increases your risk of developing celiac, but many parents, siblings and family members are resistant to getting tested.

In 2012, Beyond Celiac collaborated with the Celiac Center at Beth Israel Deaconess Medical Center (BIDMC) in Boston to address that challenge through guiding the work of Claudia Dolphin, a graduate student from Emerson College’s Master’s in Health Communication program.

Claudia’s research project “Screening for Health: Attitudes and Beliefs of Non-Participants in Disease Testing” examined the thoughts and attitudes of family members who had not been tested for celiac disease despite having a relative with the disease.

The study revealed that many family members were unaware that undiagnosed celiac disease often presents without any outward symptoms, and 64 percent of those surveyed said they would get tested for celiac disease if a family member asked them to.

In response to those results, Claudia developed the tools for diagnosed individuals to talk with their family members about celiac disease testing. Beyond Celiac is excited to announce the launch of this content in the form of webpages and a Printable Guide.

In addition, there is a new webpage and Guide to help your family members talk to their doctors about getting tested for celiac.

Beyond Celiac and BIDMC teams hope that these new resources will help you begin this important conversation with your relatives. It could be a life-saving chat!

View the webpages:

Celiac Disease in Families – Includes a Printable Guide that family members can bring to their doctors
Talking to Your Family About Celiac Disease Testing – talking points to start your conversation with relatives
Who is at Risk? – Lists risk factors for celiac disease, including family history