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

Earlier this year, NFCA 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. NFCA is excited to announce the launch of this content in the form of new 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.

The NFCA 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 new 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 – Includes a Printable Guide with talking points to start your conversation with relatives
Who is at Risk? – Lists risk factors for celiac disease, including family history

Within the hour, she feared she would become a science experiment rather than spectator, a 48-year-old human balloon floating up along the ceiling, painfully bloated and powered by bursts of gas.

“How could I have done this? How could I not know the licorice contained gluten?” Bayens angrily asked herself. She’d been vigilant since doctors told her the year before that she had celiac disease.

After being miserable for a quarter century, after suffering with gas, bloating and depression, she had found a new life when she was diagnosed with the disease and cut gluten, a protein in wheat, barley, rye and some oat products, from her diet.

And she was vigilant – until this time. She knew she had no more than 20 minutes before her circumference grew by at least six inches, and that driving home would be dangerous because she could not sit upright and the seatbelt, even pulled out to its maximum length, would cut sharply into her distended belly.

Bayens had been “glutened”, a term people with celiac disease use to describe the accidental consumption of the forbidden protein, when they are suddenly and painfully reminded of the symptoms that led to cutting it out in the first place.

Like multiple sclerosis and type 1 diabetes, celiac disease is classified as an “autoimmune” condition because the body’s immune system turns on itself, causing inflammation in the small intestine whenever it detects gluten, and leading to damage to the villi, finger-like projections that are essential for absorbing nutrients.

But unlike other autoimmune diseases, the symptoms for celiac disease are myriad and confusing – anything from diarrhea, nausea, abdominal pain and bloating to depression, fatigue, easy bruising, infertility and osteoporosis. Physicians can easily mistake the symptoms for other conditions.

In fact, it takes an average of 12 years for a celiac diagnosis, according to the preliminary findings from a major national survey, conducted by the Canadian Celiac Association in tandem with Health Canada, on what life is like on a gluten-free diet. For most people, the last thing they want to do is experience their symptoms again.

But that’s easier said than done: when you have celiac disease, every morsel of food that goes into your mouth must be scrutinized, travel and dining out carry risks, social situations can be awkward and an understanding and accommodating support system is essential for success.

Next Page: A Surprising Number Will ‘Cheat’