Celiac 101: Happy and Well-Adjusted, Not Just Gluten-Free

Exactly two years ago today, my eleven-year-old daughter Caroline was diagnosed with celiac disease. I had just pulled into the parking lot at work when my cell phone rang with the news. After the call, I just sat in my car for a few minutes, letting it all sink in. To be honest, the diagnosis was a relief – Caroline had been unwell for months, laid low with joint pain, weight loss and exhaustion. Having an answer and a plan to get her feeling better was a gift. But there was also a deep, deep grief for the loss of what was and a little fear of what lay ahead. Gradually, I started feeling overwhelmed – how would I manage this huge change in her life? And how could I support her when I had no idea what I was doing?

I know an article entitled “Celiac 101” is usually filled with nitty-gritty tips on what to eat and what to avoid. We’ll get to that. But, right from the start, let’s recognize the importance of tending to emotions – ours and our child’s. Because we want our children to be not only safe from gluten, but happy and well-adjusted, too. So, this is what worked for us in the first day or so after the celiac diagnosis:

* Allow yourself to grieve. Take a moment for self-care. Maybe this shouldn’t be done right in front of your newly diagnosed child, so draw a bath, go for a walk, whatever works. Then just let go. Think. Cry. Rant and rage. And, when you have had your fill, put it behind you. Because, ultimately, you’ve got this. You really, truly do.

* Remember that children grieve, too. We picked a quiet moment at the end of that day to tell Caroline she has celiac disease. We kept it simple, bracing ourselves for her reaction. Her response was to go through all five Kubler-Ross’ stages of grief in a matter of minutes; it was almost comical. First, denial: “I don’t have celiac; that’s crazy. I eat bagels all the time!” Then came anger: “Nooo! Just NOOOO!”  Followed by bargaining: “Maybe I can eat pizza sometimes?” and sadness: “Why? Why?” and a torrent of tears. Then, miraculously, we knew she hit acceptance when her head popped up from my shoulder and she blurted out, “Okay, let’s think. What’s our plan for food when I’m at sleep away camp?” Honestly, I barely said a word. I just held her when she wanted to be held and let her work it through. I was there; I think that was enough.

* Stay positive. Your child takes her cues on how to cope from you. Everything has a silver lining, right? I mean, if you have to be diagnosed with a disease, this isn’t a bad one to have. No chemotherapy, no surgery and the ability to be cured with the best kind of medicine (that would be food). We focused on how lucky we were that she was diagnosed now, when there are gluten-free options for almost every food. Humor is our go-to coping mechanism, so we started referring to her as Princess Glutino and joking about how trendy she is.  In turn, I heard from her teacher that Caroline spoke up at morning meeting the next day at school and humorously announced why everyone else would have a bigger share of the birthday cakes from now on.

* At the same time, don’t be afraid to acknowledge that this is hard. Caroline was a trouper but sometimes the loss of gluten got to her. At those moments, I hugged her and agreed, “Yes, celiac disease sucks.” There’s no denying it — pizza, bagels, birthday cake… gluten free isn’t the same. Sit with that for a while. Be sad. Be there. Then sigh and say, but we’ll take it from here. I’m here for you. We’ll get thru this together. Here’s our plan. Its going to be okay. We’ve got this. We really, truly do.

* Allow yourself to be supported. Another silver lining was being reminded about how amazing our family and friends are.  Gluten free desserts showed up at extended family meals.  Shelves were stocked with gluten-free soy sauce and crackers for when we came over for dinner.  And neighborhood moms would pull me aside and ask me for advice of what to serve at sleepovers.  It was evident they educated themselves, and it was a clear act of love.  I was so touched by each and every act of kindness that I was reduced to an almost perpetual state of blubbering. Two years later, as I’m writing this, I’m blubbering again. Revel in it – this is a time when support is key.

* Connect. Look for the celiac support groups, reach out on celiac blogs and in chat rooms. My experience with the celiac community is that they are generous and supportive, providing tips and Kleenex as needed during those first few weeks after diagnosis. Even if you don’t think you are the support group type, do it anyway; a tip on which local restaurant has the best gluten-free pizza is worth its weight in gold.

Having a child diagnosed with an illness is traumatizing. Attending to the emotions surrounding such an event is imperative in the healing process; you can do it now or you can do it later, but you’ll have to do it eventually. Two years ago today, when we first heard she had celiac disease, Caroline was a sick kid. A year later, she was back to being a thriving, happy child. Gluten-free is a way of life for her now; it’s no big deal. But I know, on that first day, getting to this point seemed very far away.

Today, on the 2nd year anniversary of her gluten-free life, I am headed off to see Caroline play in a middle school field hockey game. The thought that our child, who was literally unable to move off the couch two years ago, is now on an athletic team, running around with friends and happily smashing balls with sticks… well, it just blows my mind. Caroline tells me today’s game is important because they are playing her school’s archrivals. She hopes to get a goal; she wants to win. I just smile, because I know today’s biggest victory won’t be reflected on any scoreboard.

You’ve got this. You really, truly do.

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