5 Facts about Raising a Child with Celiac Disease

It’s been almost two years since Samuel was diagnosed with Celiac Disease. It’s easy for me to forget the struggle that we had back then – the health crisis, the doctor’s visits, the nights spent crying in my bed knowing something was wrong but not knowing what, and ultimately the watching of my son fade away in front of me and ending up in the hospital. I’ll look at him now – healthy, laughing, growing – and I’m amazed how one thing – gluten – can cause so much harm to his system.

But, I remember –  and because of that I fight for Celiac Disease Awareness.

Today, I’m sharing with you 5 Facts about Raising a Child with Celiac Disease in hopes that they help you as well and continue to bring awareness about this disease that affects many.

1. You talk about gluten every day. There is seriously not one day that will go by where the word gluten or gluten-free does not come up. It is simply a fact of life, a way of life for us. For Samuel, and those with Celiac Disease, there is no cheating. Ever. No just a little bite of that birthday cake, no I’ll get back on track tomorrow, no none of that. Gluten literally destroys the villi {the hairs} in the intestines and thus makes it impossible for the body to absorb nutrients. And then you starve. So he can never cheat – therefore, we talk about gluten every single day. We’re always on the look out for gluten in our lives.

2. Leaving them in group settings/classes is hard. I’m being real. It is so hard for me to drop Samuel off at the nursery class at church because I worry about him accidentally getting into gluten. It’s in playdough, goldfish, and more. So I make sure to verify and verify and verify that everyone who watches him knows that he absolutely cannot be around gluten. It’s hard. It’s hard on the days when the project is with playdough and he cannot be included. But, I’ve learned that instead of sitting in the hard parts of it to instead look at all the good, all that he can do, and remember that he is thriving.

3. It’s easy to worry. This one gets me. When Samuel gets sick or complains of a tummy-ache or looks off – I worry. Every time I take him to the doctor I have to explain his history, carry my 1.5 inch blue folder with the Spiderman sticker and my Children’s Hospital pass picture {that I stuck on there} with his records, and hold my breath while they just tell me he has a cold. But, just like I cannot not drop him off, I’ve learned to work on not worrying and instead embracing him and his life. It’s a gift that he was diagnosed — hundreds of years ago Celiac Disease was simply referred to as Wasting Disease and many, many, many of those children died. He’s here. And for that I am for ever grateful.

4. You find normal. If you’re in the beginning stages of this journey it is so hard to imagine normal. I remember standing in the Super Target by my house with my red cart almost empty, with tears in my eyes, as I watched everyone wander down the cracker aisle throwing in crackers, cereal, bars and more in their cart. Part of me wanted to yell at them and tell them you don’t realize how lucky you are to put that stuff in your carts…yet, it was just the part of me mourning a life that was once a certain way and now has changed. But, you will find normal. I promise it. We did. I can go to Target now and I’m just fine. 😉

5. You can be a voice for Celiac Disease Awareness. Three years ago I had no idea what Celiac Disease was and that it even existed. Today? Today part of my passion is being a voice. I feel blessed to have this platform, this site, and the opportunities to travel to conferences and events. When I walk through the halls of an event not only do I network, but I also intently build relationships with brands and encourage them to begin looking at the items that they produce and to embrace manufacturing safe, gluten free options. This is a privilege – and I am grateful for these opportunities. You, too, can be a voice. At the grocery store asking for more options, calling companies, sharing your stories – it all brings awareness.

Sometimes I wish that Celiac Disease wasn’t called a disease as I see my son thriving and the word disease seems so sickly. Life can be good, even with Celiac Disease, and it can be awesome and amazing even if you cannot eat gluten. I know. I’ve seen it.

If you are interested in talking more with me about Celiac Disease and gluten free living please consider joining me on the Udi’s Gluten Free Community Boards. I have been honored to be a community leader on their site for many months now. It’s a beautiful platform that encourages support among the many individuals that cannot eat gluten or choose not to eat it. And, I love their products – their bread is always in my house – so for that I’m thankful as well.

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