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I have Celiac Disease. And most of the time, I just take it in stride. I mean, I don’t really have a choice anyway, and I do realize it could be a lot worse. But every now and then, I have a good, old-fashioned melt down about it. Like a leave-my-husband-speechless kind of melt down. I’m not really a fit-throwing kind of person, so it tends to really throw him off his guard. And since he is a man, and men like to ‘fix things’, he is further stumped by the fact that he can’t ‘fix’ this. Every few months, I just need to vent about the fact that this sucks. It really does. And this past weekend was all the reasons why rolled into one inconvenient road trip.

My younger son had his very first out-of-state baseball tournament. So for moms, this means doing all the laundry that you haven’t been doing, sorting all the laundry, then packing all the laundry for everyone in the family, cleaning up the house so you don’t hate your house when you come home, flushing the toilets (is this just me?), taking out the garbage, making sure to clean out all the crap that has accumulated in your car so you can fit all this new crap in it, taking the dogs to camp, and making sure everyone has something to do in the car so they don’t drive you crazy. But for a mom with Celiac Disease (or a mom with a child with Celiac Disease), it also means that you have to plan, make and pack enough food for the entire weekend.  I can’t assume that there will be a safe place for me to eat. There is *literally* one for sure safe place for me to eat near our home. And when I say ‘near’, I mean a 25 minute drive from my home. Every other place that supposedly has a ‘gluten-free’ menu is like Russian Roulette for me. The risk of cross contamination in any non-gluten-free kitchen is huge. And when you know that you are going to spend the entire weekend on various baseball fields…you don’t take that risk. So, I pack up all my food and all my eating utensils. And when my family gets hungry and stops for fast food, I sit and eat my homemade hummus and veggies. Healthier? Yes. Convenient? Heck, no.

 Then there is the joy of meeting the other parents on the team. After the games, of course, everyone gets together for pizza. And although I ate before I came down, several people kindly offer me food. Polite refusal only goes so far. Eventually you have to explain yourself. Then the questions/comments inevitably come:

So what is it exactly that you can’t eat?

What CAN you eat?

Oh wow, I couldn’t do that! 

I realize that some people just don’t know any better. I really try to give people grace. But, seriously, you would not believe the restraint it takes for me to control my face, as well as my response when someone tells me that they “couldn’t do it” – meaning that they couldn’t live without gluten.

 I never got a choice.

When I have my semi-annual melt-down that causes my husband to question my sanity, it’s usually triggered by some random thing that I used to take for granted.  The last one was when we were driving down the highway and I was looking at all the signs for restaurants and realized that none of those advertisements applied to me. None of them. And that this would be true for the rest of my life. I don’t get to go on vacation to get away from it or take medicine to make it go away. Aren’t I a little ray of sunshine today?!

 

But let me tell you why I only throw a fit every now and then. And why, on the whole, I feel immeasurably blessed. First of all, my family has never complained that we had to go completely gluten free in our home. The first year after my diagnosis, I tried to just eat GF myself and let my husband and my boys continue to eat gluten at home, but I continued to get sick from cross-contamination. When we made the switch, they never complained. Secondly, I am surrounded by friends who realize how difficult this can be and make efforts to make it easier for me. Sometimes, just knowing that people are thinking of you makes all the difference in the world. Another blessing I have experienced is that I have been able to help several people as they have discovered the need to go gluten free. By using my experiences to help others, it feels like it hasn’t all been in vain. Finally and probably most importantly, because of this change in the way our family eats, we are eating healthier. I can’t rely on processed, convenience foods because they aren’t safe for me, but in reality, they aren’t safe for anyone. Yes, it is far less convenient and takes more planning on my part to eat meals that are made predominantly from whole foods, but they are healthier and much better tasting.  And truthfully, once you get used to it, it can be quick and easy, too.

Having Celiac Disease is hard. It’s inconvenient and misunderstood. But I’m hoping that as the years go by, that I’ll have fewer melt-downs and find more ways to help others ease into the GF life.