The other night, my 13-year-old daughter cried, “I just don’t want to think about food all the time! I hate having Celiac!” I cried with her. She was invited to her best friend’s birthday party at a Japanese restaurant. She never liked having any attention drawn to her. But, she knew if she went to the restaurant, she would have to “drill” the waiter about her meal being gluten-free. As we explain, we have to be the “real deal” gluten free, not the fake gluten free (i.e. the fad and self-diagnosed fake allergies). So, they need to change gloves, clean the surfaces, etc. I told her she can bring our Tamari sauce (gluten free version of soy sauce). “Mommy, no! I don’t want to do that! Everyone will know! I don’t want to have to explain Celiac Disease! It’s EMBARASSING!!”
I knew this day would come. The day when Celiac Disease interferes with the normalcy of being a teenager—mindful of others’ perception, judgement. The social implications of Celiac Disease can take an emotional and stressful toll. This is when she fully understands that having Celiac is more than having to follow a diet. It’s our way of life. We have no choice but to think about being safe from gluten in everything we do. As with many “diets”, a Celiac cannot “cheat”. It’s too harmful, painful, and it increases our risk for other conditions, including cancer and infertility.
“Sweetie, your best friend knows and understands. I’ll talk to her mom. You can do this; it’s ok.” She wouldn’t have any of it. “Mommy, there will be other girls there who don’t understand. Mommy, you don’t understand! I don’t want to have to explain everything to the waiter and I don’t want to explain everything to them. They’re going to ask what happens. Mommy, it is too embarrassing!” Tears are rolling from her and me. It’s tough for me to deal with my peers in explaining Celiac. They think it’s an easy diet—but you can find gluten free everywhere, many restaurants have gluten free offerings. Yeah, but almost all of those restaurants are tailoring to the fad or the self-diagnosed allergies. Most of the time it is very risky and not safe for us to eat at restaurants. I can’t imagine being a young teenager having Celiac. You just want to fit in with your peers. Celiac Disease really doesn’t allow for that. As a teenage girl, it’s not always about food. My daughter has to be careful of the makeup she wears, even lipstick may have gluten.
Her teenage years are just beginning. Pretty soon, she’ll be interested in dating. I wasn’t Celiac during my dating years. I’m just now thinking about how I can advise her so that she has a chance for that 2nd date.
Many stories about Celiac are from adults and their experiences. I wish there was more discussion of what this is like as a kid. I’ve never met anyone who has a child with Celiac Disease. I have my own experiences being Celiac, but for children, there is whole new understanding.