Celiac and Loneliness

This past May, we celebrated the one-year anniversary of my daughter being diagnosed with Celiac disease. One year of gluten-free. One year of healing.

We celebrated because of the hard work my punkin had put in. She is incredible at knowing what she can eat, what she can’t, and checking on things she’s unsure of. She’s better than even me and she never complains.

I think the first year was easier than the second, though. The first year, we were so thankful to have an answer to the issues that she’d had since being a baby. So incredibly thankful to have a path to follow to healing! To be able to put a name to the symptoms and then change lifestyles to alleviate those symptoms.

My daughter shone. She embraced all of the gluten-free options. Chose thankfulness over and over again. Enjoyed feeling better. She was fully involved and so mature in the way she handled it all. She impressed me.

Year two has not been as easy. She is just as amazing as always, but the foreverness of it began to set in.

  • Never being able to eat the same cake and cupcakes and food at parties
  • Never being able to share the same treats as classmates
  • Having to keep extra things for unexpected moments
  • Having to explain why she is different
  • Having to look up everything she wants to eat
  • Having to explain the problem of cross contamination even in “gluten free” menus at restaurants

She still doesn’t complain.

But there is a spark sometimes that dims when she can’t have something she wants.

There are the comments of looking forward to heaven where she can eat hot dogs and hamburgers on buns any time she wants.

Talking about that one day, in heaven, when she’ll have a new body that does not have Celiac Disease.

Comments and looks that cut straight to my heart.

But then, there are moments that break through that sadness.

There are people that go out of their way to make her feel involved, included, seen, and heard.

The people in our village are some of those people. Always looking out for her, always making sure to have food on hand that is gluten-free. Always checking with me on what they can serve that she’ll be able to have or where to get a substitute. We feel safe and valued.

Or going to Grandma’s house and when I offer to send her with food, and Grandma says nope, I’ve got a pizza and mac and cheese and watermelon and… and… and basically anything she could want. Gluten-free, of course. We feel so incredibly loved.

Or a friend at school stopping by to drop off gluten-free cookies or pretzels because they saw them and thought of her. We feel seen and valued.

And then, today… I was having a rough weekend and didn’t plan ahead like I normally do for a birthday party. I called my friend, a fairly new friend, and asked what she was serving so I could bring equivalent substitutes. I said I could bring a frozen pizza but would it be ok to cook it?

And her response blew me away.

She sent me pictures. Of the gluten-free pizza she bought and was going to bake for my kiddo. Of the chocolate muffins labeled GF. And she let me know of the drinks, and Cheetos, and how everything would be kept separate so I didn’t need to worry about cross-contamination.

I’d be lying if I didn’t admit to some tears rolling down my cheeks, no longer overwhelmed over what I would do to make the party good for my daughter… but overwhelmed with gratitude and feeling so loved that my friend would do this for my kiddo!

She showed so much love to my daughter today. Even my daughter got teary when I showed her the pictures and explained what was going on. We are loved, valued, worthy of friendship, thought of, and important.

I say “we” because when someone loves my daughter, when someone goes out of their way to love on my kid, to show my kid she is important – I appreciate it even more than she does.

Thank you. Thank you to all of my friends and family who make us feel loved!

If you have a friend or family member that has dietary restrictions, can I just say that the smallest gesture can feel like the biggest act of love?

If you know someone who can’t have gluten, and bring them a gluten-free treat – that act is so valued. If someone can’t have dairy, and you make sure to have a dairy-free option… so loving! It may not seem like much to you, but I promise it means the world to them!

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