But the biggest reason I keep writing about my celiac story is for awareness. In this day and age, when an estimated 1 in 133 Americans suffer from some sort of gluten intolerance, people know strangely little about this disease.
Every time I meet someone new (or have some sort of eating experience with someone for the first time) I have to explain it.
Not that I mind.
But it's distressing to me that so many people are mis-informed because of today's poor media fact-checking. I have seen several articles and tv specials, where the "specialists" talk about going gluten free as a way to lose weight. I've heard them say that Celiacs can have just a little gluten and not get sick. Even Rachael Ray, in creating "gluten free" meals, added gluten-containing ingredients to the mixture on her cooking show. Every day you hear about a new celebrity who has gone gluten free, and each time it happens, those who actually suffer with this disease have their credibility drop just a little bit.
Over and over.
I have heard horror stories from those who have gone to eat at supposed gluten-friendly restaurants, only to have someone not take them seriously (or even purposely, because of disbelief) touch something with gluten, add gluten-filled ingredients, or fail to disinfect hands/counters/utensils.
We are a bit further removed from this, since we live in a country that is so geared toward customer service. It has its pros and cons. On the one hand, I have to explain (in Japanese) what Celiac is and what I can and can't eat. The Japanese are largely unaware of Celiac, which seems to be a primarily European auto-immune disease. Every time, they have to ask the chef and deliberate each item on the menu that may or may not be gluten free. On the other hand, though, I know that if they tell me they have something on their menu I can eat, it will be prepared in a way that is safe.
I am worried about our trip to the US this summer, where I won't have my safe cocoon of a kitchen. I worry for my friends, who are left out of social situations (or are forced to sit and not eat if they do choose to go) because of the disease. I worry for those who are mis-diagnosed for years before figuring out they have Celiac Disease. I worry for the children (and even adults) in our society who are bullied because of something they can't control.
So instead of sitting here and worrying, I write. I write in the hopes that one of you will read it and learn something. Maybe you're having some of the same experiences I have had and can't figure out what's causing them. Maybe you have a friend who has been diagnosed with Celiac Disease and you don't know what it's all about. Or, maybe you're one of the many who have gone gluten free as a fad because of all the celebrities doing it, and don't realize the negative effect it has on those who are actually cursed with having to be gluten free for the rest of our lives.
I write, because I want the world (or at least, my little corner of it) to know that Celiac is a real thing and it isn't going away any time soon.
On that note, I'd like to say, "Welcome to Celiac Awareness Month!" I hope to be writing about some of the things I've discovered because of Celiac Disease (recipes/products/positives/negatives) throughout the month. To start off the month, I've created a facebook timeline template for anyone who would like it! Click the picture to get the higher-resolution version, and feel free to use and/or share it with anyone you know who wants to spread awareness! (I know it looks off-center, but once you put it on your timeline, your profile picture will balance it out!) Enjoy! ♥
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