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It’s been a year since our daughter was diagnosed with celiac disease and it’s hard to believe how far we’ve come as a family. At the beginning it was so daunting—we didn’t even know that celiac disease was an autoimmune disorder and we didn’t understand how complicated the risk of cross-contamination would make cooking and eating out. To top things off, our daughter had signs of another possible autoimmune disease, which is common in people with celiac disease. Our learning curve was steep, but the good news is that we learned and adapted. Even by the first six months, things started to feel more manageable and we could see that we would be able to tackle issues and situations that seemed like obstacles at the beginning (you can find my article for parents who feel overwhelmed by a new celiac diagnosis here).

To most adults it might not sound so hard to eat gluten-free, especially in today’s society. But if you add the fact that with celiac disease you have to ensure that cross-contamination doesn’t occur (e.g., the hot dog can’t touch the bun, everything has to be cooked in separate pots and pans, and anything fried has to be cooked in a dedicated fryer, which is very rare to find), it gets more complicated. On top of that, imagine if you were a kid. You might not fully understand why you have this illness, but you definitely know that you can’t eat like everyone else and you are different at EVERY event where food is involved. Pizza is the foundation of most kids’ events, not to mention cake, cupcakes and cookies, goldfish and pretzels. Yes, there are gluten-free versions of each of these, but what child wants to feel different and have to bring alternative foods to every party or get together?

Over the past year, I have watched my daughter navigate her new celiac diagnosis like a champion. I am so proud of her! She knows how to ask if food is gluten-free, and she knows how to manage it when she is often told that she can’t have what is being served. Sometimes she cries out of frustration when she gets home from a party, but other times she just rolls with it. As parents we constantly plan ahead, and we eventually figure it out. And more than anything, my husband and I have been absolutely in awe with how considerate so many teachers and other parents have been during this year. These people have helped us adapt to our new world, and they have gone above and beyond to ensure that our daughter doesn’t feel left out. In honor of Celiac Awareness Month, the end of the school year, and my daughter’s 1-year anniversary of her diagnosis, I wrote this post with gratitude for all those people who have made life so much easier for us and for our child:

Thanks for letting me talk about the celiac diagnosis and for not minimizing our experience

Any big adjustment or health concern is so all-encompassing, especially when it relates to your children. You are raw at the beginning and it feels like all you can think about. Even when you know things could be much, much worse, it still takes time to adjust. At the beginning my daughter’s health was on my mind constantly. I practically started conversations with strangers at summer parties by talking about the celiac diagnosis and food options. With my own friends, I know I talked about it all the time—about lab results and research, and how to handle upcoming events and situations. I’m so grateful to those friends, teachers and colleagues who let me talk about and process this new change in our lives. I’m also grateful to those people who didn’t minimize things by saying “at least there’s gluten free food everywhere now!” or “at least you know what she has!” Even though this is all true, I appreciate that our friends knew that any health adjustment can be hard, and that sometimes just listening is the most supportive thing you can do.

Thanks for asking questions about celiac disease

We’ve learned that to ensure our daughter’s safety, it’s much better to ask than just assume. We are constantly calling ahead at restaurants and asking questions once we get there. It’s amazing how much ‘fine print’ there is when it comes to food safety and gluten-free foods. For example, while there are many pizza chains that now have gluten-free pizza, if you call or read the fine print you see they can’t guarantee the pizza won’t be cross-contaminated and don’t recommend it for people with celiac. I am so grateful for our teachers and friends who have asked us before planning meals, and have let us know when they want to learn more about celiac disease. Also I’m so appreciative of those who are understanding when we explain what we’ve learned about celiac and the foods and practices we have to avoid. It might seem like overkill to most people, but once you understand the disease you realize what is required to manage it effectively and ensure safety.

Thanks for putting in the extra effort to help our daughter not feel left out

This is the one that makes me cry, every time. The mom I texted to let her know I’d be sending a gluten-free cupcake with my daughter for a birthday party who texted back to say she had already bought her some gluten-free cookies. Or the afterschool teacher who called to say she was planning a big cooking event and wanted to make sure she was using ingredients that our daughter could have. Or the family friends who bought chips for a BBQ that were all gluten-free so we wouldn’t have to worry about my daughter eating the wrong kind. None of this was required, but these gestures meant so much to us.

Thank you to the friends and parents who pull us aside before a get-together to let us know what is safe for our daughter to eat. Thanks to the daycare and school teachers who have asked to meet with us to learn more about celiac, and who have tried to ensure that our daughter doesn’t have to always have a separate snack or treat. Thank you to the friends who make their dishes with gluten-free soy sauce just so we know our daughter can have her favorite food. The list goes on and on…

Thank you ALL for going above and beyond. We would never expect that everyone would do this, but please know that it is so appreciated when you do!

P.S. The picture with this post is from a gluten-free ice cream party my daughter had with a few friends to celebrate how well she has managed her diet over the past year. Sometimes you have to splurge 🙂

If you are a parent of a child with celiac disease and have questions about our experience, please don’t hesitate to send me an email!

 

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