How am I supposed to fit Celiac Disease Awareness Month - or celiac disease itself - into a couple of posts?
|May is in and Wheat is out! (Source)|
How can one month or a handful of posts explain the struggles of being diagnosed with two autoimmune diseases (shout out to my fellow fibromyalgia warriors!) before I can legally buy a lottery ticket.
Or the insanity of not only learning what "gluten free" really means food-wise, but also cooking all my own meals between 17 units of college classes.
Or even the emotional effects of always wondering am I just run down or did I get glutened? Does the waiter really understand what "no cross contamination" means or should I go hungry while my friends eat? Do people think I'm weird when they see me pull out a blue lunchbox in a restaurant or my upper-division writing class?
The fact is, it would be an impossible feat - even for the girl who has constantly left doctors flummoxed. So, this May, I'll tell you what I do know instead.
I know that I shouldn't apologize for my dietary restrictions or risk my health for others' comfort. I didn't sent a memo to my body saying, "Well, we've been doing this whole gluten thing for 17 years now. Why don't you flip the switch and shake everything up?" Fact is, I don't know what made my celiac gene decide to light up, but it wasn't me.
|My life summed up! (Source)|
My boyfriend continually reassures me (major gluten free brownie points) that my celiac has never once bothered him - and it's time I start believing it. As they say, "Those who care, don't matter; and those that matter, don't care."
And, if I feel uncomfortable with the level of service at a restaurant, I'm not obligated to eat there. I hardly ever go to a restaurant without checking ahead for gluten free options (and packing my own food if no safe ones are found), but when something does seem off at a place I love (Chipotle, cough cough), I no longer hesitate to ask for another server, to speak to the manager/chef, or to even leave for greener (un-gluten-er?) pastures.
I know that spreading the word about celiac disease is up to us - and I'm accepting this challenge head on. Especially since starting to date my boyfriend (and therefore spending more time in the caf while not eating), it isn't unusual for me to explain the basics of celiac disease to at least one new person a week.
I'll admit that it's awkward at times. I hate entering the dorm kitchen, turning down a gooey chocolate chip cookie, and hearing the girl say, "Oh you're gluten free?" Earlier this year, I would nod and leave it at that. Now, I've learned better - even if I'm in a hurry, I always mention "celiac disease" as my reason. I've learned, in particular, that "gluten free" will never lose its fad-diet reputation unless people keep seeing faces connected to the abstract name of "celiac disease." And, whether I want to be or not, I'm one of those faces.
|Celiac and the Beast says it right!|
I know that, for all the trials celiac disease has inserted into my path, it has changed my life for the better overall.
Thanks to celiac disease, I've tasted avocado, dragon fruit, cashew butter, banana ice cream and handfuls of other foods I never dared (or felt the need) to try. In fact, I'm now pretty willing to eat everything once (items that would temporarily or permanently kill me obviously excluded).
I've also learned that the girl who used to have trouble opening up to anyone loves posting her biggest fears/struggles/accomplishments on the Internet for a bunch of strangers to read. Go figure! And, for someone who never liked the online scene, I've even befriended a good amount of fellow bloggers I've met along the way. (Let Operation World Domination begin!)
Perhaps most importantly, these last two years in the hospital, out of the hospital, losing and gaining weight have shown me more about my body than a human anatomy class ever could.
It is resilient, bouncing back from nutritional deficiencies and weight loss so severe the bone density scanner had to place a bean bag next to my thigh so the machine could differentiate the (fake bean bag) muscle and fat from the bone. It is stubborn, taking its own sweet time to recover the pounds and strength I spent months (and thousands of calories) building up. And it is unique. Growing up, I've always been the patient where doctors exclaim, "This is the first time I've ever seen such a thing!" (Like my fibromyalgia, I get my surprise swag from my mom). I used to hate it. Scream at it, actually.
And while this unique bod still gets on my nerves (stress-induced bloating, I'm staring at you!), it is a part of me and the celiac movement. In fact, every "unique" struggle that a celiac faces is part of the cold, hard truth of celiac disease that May celebrates sharing.
Besides being finals week, my sister's big 1-8, and the start of Celiac Disease Awareness Month, the first week of May also marks my celiac anniversary. Somewhere around this time, I picked up the phone call that changed my life. That woke me up to the debilitating impact of "gluten" in certain individuals, the medical counterpart to the gluten free fad-diet, and how living without bread can (on bad days) really bring a girl to tears.
My Celiac Awareness posts - and even all the days of May - are too short to fully flesh out the disease that is celiac. But, like that phone call did to me two years ago, I hope that they can start a conversation.
*Also found at RunningwithSpoon's link party!*
What's your thoughts on Celiac Disease Awareness Month? What is the one fact you'd like the public to know about celiac? Comment below!