Celiac Awareness Month – Our Journey with Celiac Disease The Ciciarelli and Schmidt Family

By Francie Kelley, Executive Director, Celiac Kids Connection, Boston Children’s Hospital

I had the opportunity to spend time with on of our CKC board members, Janet Ciciarelli, to talk about her family’s journey with celiac disease.

In late 2019, Janet’s two daughters, Eve and Maya, were diagnosed with celiac disease. Several months later, as a result of first-degree relative testing, her husband, Lars, also tested positive for the condition.

For this family Celiac Awareness Month is an opportunity for the spotlight to shine on celiac disease. They believe that with more knowledge and understanding about celiac disease and the gluten-free diet out in the general public, the easier it is to live with this condition.

The family eats a pretty typical diet. The kids love and eat lots of fruit. They try to plan meals that are naturally gluten-free. And that works well most of the time. But like all kids, the girls love cookies, pasta and pizza. Fortunately, there are lots of great gluten-free options available for them.

They find the hardest part of living with celiac disease is when there are unplanned treats at the kids’ events. Eve and Maya are lucky to have very supportive grandparents (their grandfather also has celiac!). And after several games where “surprise” donuts made an appearance, the grandparents started to bring Katz Heavenly Crème Cakes to each game. That way, when a “surprise” treat appears the grandparents are able to give the girls a delicious treat of their own.

Janet’s wish for celiac awareness month is for people to understand that the gluten-free diet is not a choice. It is not a fad diet. It is a treatment for a medical condition. She hopes that more awareness will result in more acceptance.

The entire family acknowledges that adapting to the gluten-free diet was hard at first. But after 3 years living with celiac disease, it’s normal and they do not think about it every day. The benefit is that everyone is healthy, happy, and thriving.

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