Imagine having to plan your life around food – what you will eat, where you will be, and which restaurants or grocery stores are nearby. Now think about how you would handle the possibility of not being able to eat for an extended time. This is the reality for those with Celiac disease.
Do you know what it’s like to be considered “petty” for declining food or receiving an eye roll for requesting to read the ingredient label? This is the daily life of someone living with Celiac disease. Factor in late-night jokes and the recreational celebrity romancing of all things gluten-free and we have one heck of an uphill battle.
With so many people attempting to be keyboard doctors, myths and outdated information constantly spin in the gluten-free community. Thus, making the transition to gluten-free life difficult and confusing for the newly diagnosed.
One of the hardest things for friends, co-workers, strangers and even family to successfully wrap their heads around is cross- contamination. How something so seemingly minor as a single breadcrumb can be a health hazard is shocking to most people. “Surely a little bit won’t hurt” and “you’re just being dramatic” are phrases every Celiac has heard one too many times.
Celiac Is NOT a Choice
Celiac involves more than just avoiding bread… and it’s never okay to “cheat”. Celiac is an autoimmune disease to which there are no severity levels. 1 in 133 people have Celiac and you either are or you are not. There is no in between. While there are variations in noticeable reaction to gluten ingestion, every Celiac suffers the same internal consequences – aware or not. Those consequences are the risk of osteoporosis, thyroid disease, neurological conditions, intestinal damage and cancer. Yes, cancer.
When a person with Celiac ingests gluten-containing foods their immune system wages an all-out war. You see, our immune system thinks that gluten is the enemy and will do everything it can to quickly eradicate the ‘threat’. Sometimes our bodies respond so violently that it really does feel like there is a war raging within. Sometimes it can take days or even weeks to recover from a glutening.
Consideration Is Key
It can be overwhelming to constantly explain why we’re not eating… even worse when hunger kicks in after a long day. Not that it’s anyone’s business to begin with, but for some reason, people become really invested in what others don’t eat. It’s okay to ask questions. But, unless you’re a physician who specializes in autoimmune diseases, your personal analysis is unnecessary.
It’s also bad manners to suggest that your hairdresser’s friend’s naturopath knows a cure. There is no cure or treatment. The only way to properly manage Celiac is with a strict gluten-free diet. Anyone who suggests otherwise is dangerously misguided or trying to cash in on the less informed, regardless of the health consequences.
There is also a psychological side to Celiac that can often be overlooked. You see, we’re sometimes left out of social gatherings. Whether it’s a night out with the girls, a wedding or a family BBQ, there are spells where the invitation just doesn’t get extended. This can be life impacting. It can lead to depression, anxiety and isolation for those who lack a support network. Though it can be tricky, we can handle social gatherings. Experienced Celiacs know to eat well before leaving home. We’re also used to packing snacks, as having Celiac disease is the equivalent to a lifelong picnic.
If you become aware of someone with Celiac, please know that it is NOT acceptable under any circumstance to say the following:
“I feel sorry for you”
“I couldn’t survive on a gluten-free diet”
“Isn’t your food gross?”
“So, what can you eat?”
“I know what it’s like – I’m vegetarian/vegan”
“Does it help you lose weight?”
Any statement that starts with “I read online…”
How To Support a Celiac
Want to be supportive? If you know someone with Celiac, take some time to visit the Canadian Celiac Association’s website. They are the force behind some of Canada’s impressive food labelling laws. Get in touch with a local Celiac support group or do some research on your own. There are so many wonderful books written about this complex disease. Pick one up from your local library or bookstore and give it a good read. The more you know about Celiac disease, the easier it will be for you to understand what those living with it deal with daily.
Understand that life flows a little differently for us – we need to check every label every time, correspond with restaurants and have a backup plan. There will even be times where we must decline food, because it’s unsafe. It may seem excessive, but it’s how we protect ourselves.
The best way to show someone with Celiac that you care is to be there for us. Be mindful that Celiac is a serious autoimmune disease that deserves respect and understanding – just like any other medical condition. Be our rock when we get emotional and, if you hear someone trivializing gluten-free, call them out. Otherwise, the fad diet stigma will continue to shadow us everywhere we go. Be the person who helps change that for us.
In honour of May being Celiac Awareness Month, I challenge you to learn as much as you can about the disease and spread some awareness in your own way.