This month marks the third year since I was diagnosed with celiac disease and almost two years since both my younger children were diagnosed. Our gluten free life has become so deeply engrained and automatic that it almost feels sometimes like we’ve lived this way forever. Our refrigerator, pantry, and freezer have almost nothing in them containing gluten. My wife sometimes likes bread or frozen flax seed waffles, and sometimes a breakfast cereal (hot or cold) with gluten. She will also sometimes have some nuts or chocolates in the house that are not guaranteed to be gluten free. But other than that, she pretty much eats what we eat at home.
We’ve essentially converted our lives to be gluten free. Everything we cook is gluten free. And though we tended to cook a lot before, once a food-related diagnosis enters the picture, cooking for yourself becomes a lot more important. My son has been living in an apartment at college this year and cooking all his own meals. My daughter has been learning how to cook more for herself — so much so that the morning after a recent sleepover she made breakfast for herself and her friend.
My kids are both careful and assertive about what they can or can’t eat, especially my daughter. My son, like me, sometimes prefers to avoid going out in order to skip the hassle of explaining yet again that he has celiac disease.
Family gatherings are actually the hardest social setting. At work, school, and with friends you can simply decline to eat anything you didn’t prepare or bring yourself. My kids and I often employ that approach. We can, for instance, eat before or after a gathering and just have something to drink while others eat. It’s a way of participating socially without having to worry about the food. But at family gatherings, as they’ve started to learn more about celiac disease, they want to try to prepare something we can eat. It’s an understandable motivation. In their shoes with a family member on a restricted diet, I would probably have the same urge. And it’s hard to say no in the face of intended kindness.
But there are so many hidden ‘gotchas’ when cooking for someone with celiac disease. Their kitchens and appliances are not a gluten free environment. Were they careful about cross contamination? And there are the things that are so automatic for me now that it’s hard for me to remember them all when I tell them the foods to watch for. It’s hard to say no, but at the same time it’s hard to trust that they really managed to cook a truly gluten free dish, especially since it’s not something they regularly do.
Another difficult situation these days is when my wife has been sick and people from our church have wanted to bring us a meal. (Honestly, a decade or more ago nobody ever really offered. Not sure why. Ironically, now that we can’t really accept somebody seems to ask almost every time.) It feels rude to decline, but at the same time nobody in our house but my wife could eat it anyway. And since I’m cooking, I can easily cook enough for all of us.
Adapting to this disease hasn’t been fun for any of us and I still feel bad that my children inherited it from me. But we have a good handle on it. Since we discovered my kids had celiac before they had a significant amount of damage, they will never have the chronic, severe symptoms I developed and which I’m still working to overcome. I’m thankful for that much at least. And we remind ourselves that if you are going to have a chronic, incurable disease, celiac is a pretty good one to have. You can control it completely simply by managing what you eat.
Now if we could just get the blood tests for celiac disease added to routine screenings, nobody would have to wait for a diagnosis and suffer the symptoms a lengthy delay in that diagnosis can create. Given that 1% of the population has celiac disease and most of them don’t know they have it, screening for it as part of normal physicals seems like a wise step for the medical community to take. And you can’t just screen once and forget about it. If you have the genes for celiac disease, they could activate at any time.
I hope life is treating those who read this blog well. Peace.