Around 3 million Americans are currently living with celiac disease, but nearly 2.5 million of those people are undiagnosed or misdiagnosed. For those who suspect they have a health issue, it will be a difficult journey that takes 6-10 years, on average, before they are diagnosed with celiac disease.
Most, however, will remain undiagnosed or misdiagnosed, which puts them at risk for developing a number of other related disorders including infertility, reduced bone density, anxiety, depression, certain cancers and other autoimmune diseases.
Testing for Celiac Disease
If you are already diagnosed with celiac disease, you are in a unique position to significantly improve that diagnosis rate by speaking with the people most at risk: your family members. Celiac disease is genetic, meaning that it runs in families, and 5-22% of people diagnosed with celiac disease have an immediate blood relative with the disease.
Having a conversation with family members about their health is always challenging—and encouraging them to get tested for a disease is even more so. To help patients speak with their family members about getting tested for celiac disease, Beyond Celiac developed the Seriously, Celiac Disease campaign. For advice on what to say and how to say it, you can watch a video that shows the conversation you should have with family and download a Dos and Don’ts guide that gives you detailed information about how to most effectively talk to them.
The key to communicating the importance of getting tested for celiac disease is having a one-on-one, in-person conversation with your family member. Keep the conversation personal and comfortable for them, so that they are more likely to listen and respond. Talk about the facts of celiac disease, highlighting its severity and its link to other diseases and conditions. Tell them that most people with celiac disease have no symptoms, so testing is essential to getting diagnosed and treated, as well as to decreasing the chance of long-term health complications in the future. Let them know that the first step is a simple blood test, and urge them to take this step.
There are also a few things that will prevent you from having the best conversation possible. Simply sharing information by email or on social media is not effective, so create a time and space to speak with each family member individually. And though you want to share the facts about celiac disease, just rattling off statistics may make the disease seem less personal to your family member, so focus on them and their health. Our final tip? Don’t focus on the details of the gluten-free diet, as this change may scare some people away from testing.
After your conversation, your family member may not head straight to the doctor’s office for a test, because this news may take time for them to absorb and act on. You should follow-up with them if you have already chosen a date to do so, but otherwise let them make the final decision about testing on their own terms.
Head to the Beyond Celiac website at www.BeyondCeliac.org/SeriouslyCeliacDisease to watch the video and learn more about the best way to help your family members get tested for celiac disease.