By Alicia Carango, Beyond Celiac Web & Social Media Manager
A few weeks ago, a National Foundation for Celiac Awareness (NFCA) team member went out to eat with friends. Even though she asked all the right questions and explained her needs up front, she knew hours later that she’d been glutened.
She told me about what happened the next day at the office. She was upset, and rightfully so. “I try so hard to stay gluten-free,” she told me. And boom – one error on the part of another unravels the work she puts in day in and day out to feel well and stay healthy.
Restaurants aren’t the only place where accidental exposure can happen. I hear from the Beyond Celiac community about their run-ins with gluten all the time. One woman recently shared an experience on our Facebook page. Her boyfriend had accidentally used her cast-iron skillet to make something that contained gluten. Since she couldn’t put the skillet in the dishwasher, she was worried about the ongoing risk of accidental gluten ingestion every time she used the skillet from then on.
I’m sure you can relate to these two stories. Whether it has happened in a restaurant, at work or at a family gathering, most people with celiac disease or non-celiac gluten sensitivity (‘gluten sensitivity’) have been exposed or nearly exposed to gluten at some point. It’s natural to be angry, sad and frustrated when it happens. The most solid advice I can give in these situations iscontrol the controllable.
Ok, so what does that mean anyway?
Basically, if you’ve done everything you can to avoid gluten exposure and it happens anyway, the only thing you can do is control your reaction to the situation. Here are some tips to help you advocate for your needs and prevent the scenario from happening again.
Try this:Take a deep breath
People tend to shut down when someone is yelling and it can only escalate the situation. If you’re calm, people are more inclined to follow your cues and really hear what you’re saying.
Try this:Explain how a person’s actions negatively impacted your health
Instead of:Letting it slide
For example, if your family member used your dedicated gluten-free toaster, calmly explain why it’s a concern for your health. Try keeping it simple, yet direct: “When I was first diagnosed, I couldn’t believe that even a crumb of gluten can damage my body. But, it’s unfortunately true. Sharing a toaster with gluten-containing food puts me at risk for immediate and long-term damage, so it’s very important that my appliances and dishes stay separate from yours. I’m happy to talk about any questions you might have so we can stay on the same page.” Feel free to go into the details of your symptoms if it helps you get your point across. The bottom line? If someone endangers your well-being, you have to let them know. They’ll never know they’re making a mistake and no corrective measures can be taken if you don’t tell them.
Instead of:Isolating yourself
Harboring anger only hurts yourself. Even though cutting yourself off from social situations might seem like the safest thing to do, you have to take your emotional health into account, too.
Try this:Take a corrective action
Instead of:Repeating the same process
Back to the toaster example – when you or your family member purchases a new gluten-free-only toaster, clearly label it gluten-free to prevent the mistake from happening again. Consider keeping it in a cabinet if you can, and take it out only when you’re ready to use it. Remember to talk your loved one about your needs and the new way you’re handling the risk of cross-contact at home.
Don’t be discouraged if your first (or second or third) attempts don’t go as planned. The truth is, as long as the gluten-free diet is the only treatment we have, it’s important that we accept the reality that not everyone is going to understand our needs. But, if we can learn how to stick up for ourselves and advocate for our own needs, then we’ve won half the battle.
Understanding how to best communicate your needs take time and practice. As long as celiac disease is a 100% self-managed condition, it’s important that we know how to effectively and positively deal with the emotions that come along with being put at risk. Beyond Celiac is here to guide you through your journey with celiac disease or gluten sensitivity. Connect with us and our community on social media to get the support and resources you need to eat without fear and live your life to the fullest!