Health Advocate Blog

Have Celiac? Talk to your family about it

May is Celiac Awareness Month. According to the National Foundation for Celiac Awareness (NFCA), Celiac disease is a serious genetic autoimmune condition that damages the villi of the small intestine and interferes with the absorption of nutrients from food.

For those with Celiac disease, the main treatment is a strict gluten-free diet. If you’ve been diagnosed with Celiac, it’s important for you to avoid eating gluten, which is found in wheat, barley, and rye. If you have Celiac and you eat gluten, your body’s immune system essentially attacks itself, which can lead to health issues like malnourishment, other autoimmune diseases, osteoporosis, thyroid disease, and other conditions.

Because Celiac disease is genetic, it can run in families. If you are diagnosed with Celiac disease, it’s recommended to speak to others in your family about also getting tested for the condition. Here are some tips to help you get the conversation started:

  • Educate your family about what Celiac disease is. Talking to each of them in person is ideal, and talking on the phone is the next best option. It’s not a great idea to have this conversation over email, on social media, or in a group setting.
  • Make it personal. Don’t overwhelm them with statistics; instead, tell them your personal story with the disease.
  • Allow your family to ask you questions about the condition. Talk to them about the seriousness of the disease and how you manage it.
  • Tell them that if you have Celiac disease, there’s a possibility that they might have it, too. Celiac can be a silent disease that may or may not show any symptoms.
  • Mention that getting tested for Celiac can have a positive impact on your family’s health and future. If another family member is diagnosed with the disease, this knowledge can help them start improving their health.
  • Don’t try to force a family member to get tested for Celiac. But do try to create an action plan with them. Some people may be more enthusiastic than others about wanting to get tested promptly. For those that aren’t agreeable to getting tested quite yet, offer to revisit the conversation at a later date, and discuss testing at that time.
  • Try to avoid talking to them about the details of a gluten-free diet. Change often scares people, and the thought of having to modify their diet may dissuade some people from getting tested. If they bring up the gluten-free diet, try to mention it in a positive way (for example, “Eating a gluten-free diet has made me much more mindful about what I’m eating”).
  • Click here to check out the NFCA’s comprehensive resource, “Seriously, Celiac Disease: Talk. Tell. Test” for more details on talking to your family about Celiac disease and getting tested.

For More Information

Learn more about Celiac disease:

If you have recently been diagnosed with Celiac, click here:

Learn more about getting tested for Celiac disease:

Find out more about a gluten-free diet here:

For Health Advocate Members

If you are a Health Advocate member and think you should be tested for Celiac disease, call us. We can help you find an in-network doctor to discuss your concerns and undergo testing with, if necessary. We can also help answer questions about diagnoses and treatments, secure second opinions, and more.