Talking with Your Family about Celiac Disease

Posted on April 4, 2016

Most of us in the celiac world know the statistic of 1 out of 133. That means 1 person out of every 133 people in the United States has celiac. This statistic is shared regularly in marketing materials, advocacy work and educational efforts.

What isn’t shared regularly is that if you have celiac then your first- and second-degree relatives have a much higher chance of having celiac as well. Instead of 1 out 133, the odds of having celiac are 1 out of 22 (first degree) and 1 out of 39 (second degree). That means your parents, children and siblings (first degree) and grandparents, aunts, uncles, nephews, nieces and grandchildren (second degree) should be tested.

Depending on how well your relatives embrace your diagnosis is probably a sign of if they will be open to be tested themselves. Perhaps (and hopefully!) they have embraced your diagnosis and are open to learning more about their odds of having it as well.

However, you might have relatives who aren’t as open and having a conversation that encourages testing may be difficult. You might not know where to start. Beyond Celiac, a non-profit dedicated to celiac research, empowerment, education and advocacy, has developed a program called Seriously, Celiac Disease which can help. It includes some information on the genetic component of celiac disease as well a brief video to start the dialogue with your family.

If costs are an issue, the University of Chicago Celiac Disease Center and Advocate Lutheran’s Pediatric Celiac Center hold free celiac screenings in the Chicago area every year (October and March respectively).

Take the time to speak to your family members. Encourage them to get tested. This conversation may be difficult, but it is important.

For more information:

Beyond Celiac’s Seriously, Celiac Disease

University of Chicago Celiac Disease Center

Advocate Lutheran’s Pediatric Celiac Center


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