May is Celiac Awareness Month! And while that might not meaning anything to you yet, it should! Why? Because a growing number of the world’s population suffers from celiac disease – and 80-87% of those with the disease in North America are as of yet mis or undiagnosed! Even if you don’t have Celiac you can – and should! – be an ally and advocate for those who have to deal with it on a daily basis.
But before I get ahead of myself, let me explain just what celiac disease is.
Celiac disease is an autoimmune disease that causes the small intestine to become damaged when a person consumes gluten, a protein found in wheat, rye and barley. Over time the small intestine is no longer able to absorb nutrients effectively, which can lead to a whole host of issues, including a lot of physical, mental and even emotional symptoms.
A few of these include:
- Stomach swelling after consumption
- To clarify: I’m not talking about your standard post-nacho food baby here! Distended tummies are swollen tight and feel hard to the touch – they can also really hurt or feel otherwise uncomfortable.
- Digestive issues
- Emotionality/mood swings/depression
- Brain fog
- Dental enamel defects
As I said, those are just a few of many. According to The Celiac Disease Foundation there are over 200 possible symptoms associated with the disease. Wow!
In case you’re reading with one eyebrow raised, thinking “The physical stuff sounds bad, but don’t you just have to avoid gluten to be fine?”, you’re in good company. A lot of people think that way. Unfortunately it’s not quite that simple.
The best way to understand what daily life is like for someone with celiac is to start by imagining missing out on all of your favorite breads, pastas and treats. Not so fun, hm? Now take it one step further and think about not being able to participate fully in office parties, holiday events, birthday parties and more – all because you can’t eat the same food that everyone else is. And that’s not even the worst of it! Picture going on vacation to a new culture and instead of trying new things and relaxing, having to carry around cards that explain your disease – potentially in a foreign language – to restaurant managers and cafe owners. You may even have to plan your travel around where you can safely eat!
It may sound extreme, but one of the most complicated parts of celiac is that gluten is pervasive. It sneaks in and stays places, like in the grooves of wooden cutting boards and the scratches in bowls. That means that individuals with celiac usually can’t use shared cooking materials, so even if a well-meaning individual prepares something “gluten free” using equipment that has handled gluten, the item typically isn’t safe for us. Same goes with shared shelves in bakeries! Those gluten free muffins you see unwrapped in the display case next to the wheaty/glutenous ones? Yeah, they’re a no go as well.
It’s complicated to say the least. But, having celiac isn’t all bad. After all, most of us feel much, much better once we heal and adapt to our lives as gluten free beings. And as awareness grows so does our ability to live life fully!
Not sure how to help support folks out there with celiac? Here are a few things you can do to be an ally:
- DON’T ask people whom you know have celiac disease what symptoms they have.
- It’s natural to be intrigued, but these symptoms are often private and not necessarily something we want to think about – especially when out to dinner or in public!
- DO welcome your friends with celiac to help you cook before potlucks/dinners/house parties.
- Many of us now have portable sets of tools or are just plain old happy to trot over with a pot and cutting board or whatever it is you need and help cook. Not only does this allow us to partake in part (or all of) the meal, but it also reduces your cooking time. Win win!
- DON’T minimize it.
- It’s easy to write off celiac as just another fad, but the reality is that it’s a serious disease that can be crippling if not dealt with and managed well.
- DO ask if there is anything you can do to create a safe space at social gatherings
- Even if the event ends up being too complicated to make fully safe, we will still really appreciate the offer. Truly!
Curious about how people with celiac travel or where we eat? Check out my Gluten Free section to learn more! (I particularly recommend Tips For the Traveling Celiac and my Gluten Free Guide to Amsterdam.)
Are you a person living with celiac? I’d love to hear from you! Leave me some of your tips or information that you WISH non-celiacs knew or understood, along with your name for a chance to be featured in an article later this month!
Xoxo,
Featured Image: Gluten free pizza at BigLove Caffé in Paris, France.
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