Popularity does bring options, and to some extent awareness, but the infusion into pop culture has led “gluten-free” to completely overshadow celiac disease. The result? Those of us living with celiac disease aren’t being taken seriously.
Overuse of the term “gluten-free” undermines our needs, which is frustrating, but more importantly, it can have dangerous, long-term health consequences. As the president and CEO of the Beyond Celiac, I travel extensively, and must inevitably dine out at restaurants.
Like you, I ask all the right questions, but occasionally I still get glutened. Not only does it derail my next three days, but I worry about the permanent damage that could lead to yet another autoimmune disease or an even more serious conditions, like cancer.
Just recently, I went to an event that included a sit-down dinner. I called ahead and spoke directly with the chef about my gluten-free needs and reiterated my requirements to the server upon ordering. Nonetheless, I was still a little nervous when the food arrived. I didn’t get the impression that they truly understood the significance of celiac disease. But I ignored my gut feeling, ate the meal, and sure enough, I knew soon after that I had been glutened.
As I became sick with debilitating symptoms, I vented to my husband and the team at Beyond Celiac, and swore that I would never go back to that event. I was angry, unwell and just wanted to forget about the whole ordeal. But I quickly realized that if I didn’t immediately speak up, this would reaffirm to the server and chef that staying strictly gluten-free isn’t serious business. I would be slotting myself into the “picky eater” category. To establish importance, I promptly picked up the phone, shared my experience with the caterer, and strongly recommended they implement better procedures.
If we want society to recognize the gravity of celiac disease, we have to take it seriously ourselves and do so consistently. Here are some sample scenarios with suggestions for actions you can take to show that yes, your gluten-free needs do matter.
Your server brushes off your questions.
Not everyone is comfortable pushing back and continuing to work for answers. If you have any doubts about the food, you can leave. It might seem drastic, but it will show that your disease is serious enough for you to opt out of the meal altogether.
Your family asks, “Can’t you just have a little gluten?”
I think we’ve all gotten this question at one point or another. I’ve found that talking about the long-term health consequences of gluten exposure really helps to drive the point home. Tell them that mismanaged celiac disease can lead to osteoporosis, anxiety, depression, other autoimmune diseases and even certain cancers.
Your doctor won’t test you for celiac disease after your child’s diagnosis.
Tell him about the severity of celiac disease and the genetic component. If he is still reluctant to test you, explain that you’ll be seeking a new physician who is able to address your concerns. Letting him know your needs haven’t been met sends a stronger message about the situation than simply never returning to the office.
Your family members don’t want to talk about their risk.
A big part of getting your family members to test for celiac disease is to use a research-tested approach. Beyond Celiac conducted a study to learn how family members want to be approached about testing. The results are part of our “Seriously, Celiac Disease” campaign.
Your well-intentioned relatives give gluten-containing food to your celiac child.
When kids are young, it’s much more difficult to keep them gluten-free when you are not around. Start teaching them early about not accepting food from anyone but you, your partner/spouse and others who understand celiac disease. If accidents happen, calmly explain to the relative what went wrong, why it’s a problem, and how it can be avoided in the future.
It can take time to learn how to get your point across in a way that will resonate with others. The simplest advice that I can give is to keep individual personalities in mind and persist until you find methods that work. You can do it!
Alice Bast is CEO of Beyond Celiac, the national organization working on behalf of the celiac patient community. Visit BeyondCeliac.org to learn more.