PHILADELPHIA (April 20, 2015) – In conjunction with Celiac Awareness Month in May, the National Foundation for Celiac Awareness (NFCA) has launched “Seriously, Celiac Disease,” the only national campaign dedicated to raising awareness among people with diagnosed celiac disease about the importance of having a serious conversation with relatives who may be genetically at-risk for the condition. The campaign was developed as a result of NFCA research that showed when at-risk relatives are properly educated about the condition and armed with the right tools, their receptivity to get screened for celiac disease increases.
For the three million Americans with celiac disease – 83 percent of whom are undiagnosed – consuming the gluten protein found in wheat, barley and rye triggers an immune response that damages the nutrient-absorbing lining of the small intestine.
Celiac disease has a variety of symptoms and can lead to certain types of cancer and other autoimmune diseases if mismanaged or untreated. However, most people with undiagnosed celiac disease don’t have any obvious signs or symptoms, and a simple blood test can help avoid some of the long-term disease complications. Additional diseases and conditions, including cancer, other autoimmune diseases and osteoporosis, can all manifest as a result of untreated celiac disease. For people with celiac disease, following a strict gluten-free diet is both medically necessary and the only treatment option to combat symptoms and prevent serious long-term complications.
“Through our community’s experience, we know that most untested family members only want to have this serious conversation once, so it’s important to use the right information, in the right setting, using proven methods when talking to them,” said Alice Bast, President and CEO of NFCA. “By equipping individuals with the right tools to help their relatives understand the importance of formal diagnosis, NFCA hopes to have a major impact on the health and future of many families.”
The “Seriously, Celiac Disease” campaign aims to encourage individuals with celiac disease to “Talk. Tell. Test.” with their biological relatives using personal, one-on-one conversations:
TALK to your family.
- It’s important to talk to both immediate and extended family members soon after a celiac disease diagnosis to help them understand why getting tested is important for their own health. These private conversations should be initiated in person using a serious yet personal tone.
TELL them the facts.
- Since many people with celiac disease don’t have any symptoms at all, it can be hard to clearly explain what undiagnosed celiac disease can do to the body. That’s why it’s important to relay the facts of celiac disease to relatives. Once one person is diagnosed, all biological relatives need to know that celiac disease is genetic. Those diagnosed play a key role in helping family members understand the importance of a formal diagnosis and its long-term management with a team of knowledgeable healthcare providers.
Urge them to TEST.
- A simple blood test is the first step in learning if a person has celiac disease. Depending on the results, a biopsy of the small intestine to check for damage may be ordered by the physician following the blood test.
“Celiac disease is genetically based, so it is more common in those with a family history of the condition, and having an autoimmune condition like celiac disease makes you more likely to develop other autoimmune diseases," said Daniel A. Leffler, M.D., M.S., NFCA Scientific/Medical Advisory Council Member and Director of Research for The Celiac Center at Beth Israel Deaconess Medical Center in Boston. “Testing at-risk populations for celiac disease has been consistently shown to improve detection rates among family members and accurate diagnosis is vital to ensure that the disease is managed appropriately.”
Visit www.SeriouslyCeliac.org to access the following free NFCA resources to help get the conversation started:
- PSA Video – A powerful video that teaches those diagnosed with celiac disease how to effectively talk to relatives about the importance of celiac disease testing using tactics grounded in the Health Belief Model, one of the most widely used conceptual frameworks in health behavior.
- Discussion Guides – Research-tested tactics that explain the specific “dos” and “don'ts” needed to drive this important conversation between family members, as well as with physicians.
- Personal stories –Personal stories from others diagnosed with the serious genetic autoimmune disease are available to learn about other family testing experiences.
People diagnosed with celiac disease typically have only one chance at discussing testing with their family. Because of this, NFCA encourages the community to share the video with others diagnosed and not directly with family members, as NFCA research has shown that a personal, one-on-one offline conversation is the most successful approach. People in the celiac disease community can follow the hashtag #TalkTellTest to join in the conversation with NFCA and others having similar experiences in helping their family members get tested.
About the National Foundation for Celiac Awareness
The National Foundation for Celiac Awareness advances widespread understanding of celiac disease as a serious genetic autoimmune condition and works to secure early diagnosis and effective management. We empower our community to live life to the fullest, and serve as a leading and trusted resource that inspires hope, accelerates innovation and forges pathways to a cure. For more information, please visit www.beyondceliac.org.