It’s a Saturday night and I’m out celebrating my friend’s birthday at a restaurant in the middle of downtown Pittsburgh. I skim through the limited menu choices that seem to shrink with each detailed description. Fish battered in beer and fried to crunchy perfection. Steak seasoned with the finest spices and marinated in soy sauce. Ceasar Salad topped with seasoned croutons made in house. I look to the waiter when he arrives to the table and smile softly before asking “do you have a gluten-free menu?” He rolls his eyes before looking to the menu. “We have gluten-conscious items on the menu that can be made to remove gluten.” I nod with a sigh before ending up with a salad without croutons. When the pizzas arrive that my friends have ordered, my salad is slid in front of me, coated in croutons. I then have to explain once again that I have a gluten ‘allergy’ and that my salad has to be remade without croutons. Another 20 minutes of waiting.  

​

In the summer before my sixteenth birthday I was diagnosed with celiac disease – an autoimmune disorder wherein the consumption of gluten; a protein found in wheat, barely, and rye, causes the immune system to attack the small intestine. Celiac disease does not have a cure yet, and the only way to save my small intestine from itself was to follow a strict gluten free diet. Strict is one way to put it: I cannot consume above 20 parts per million of gluten without triggering my immune system. (To put that in perspective, that’s the size of a breadcrumb. Maybe smaller.)  I was scared, for multiple reasons, one of them being that I wouldn’t get a cake for my 16th birthday, which is a huge deal for a teenager. I was also worried how this would impact the rest of my life.  

​

Going through the trials of finding food that didn’t crumble when I tried to eat it or didn’t taste like sandpaper on the tongue was nauseating. Yet, with the help of my mom, she and I found things that worked and recipes that were worth the hassle.  I’m nineteen now and am a sophomore in college, living on my own, without my diligent mom helping me navigate restaurants and grocery stores. Thanks to my apartment, I can make food I know will be safe for me to eat, without worrying about the consequences. For anyone else, like the waiter that served our table that day in Pittsburgh, my diet seems like a way to slim down a few pounds. Which is infuriating for me. I’ve been living with this disease for four years now and people seem to think that I am a health nut that wants to go all out with today’s fad diets. A reminder that I’m nineteen, so when I tell people about my lifestyle, they tell me that ‘you don’t need to lose weight!’ and ‘a little bit isn’t going to kill you’. Well in fact, it might.  

​

Gluten free living for those with celiac disease is vital, for without this diet, their bodies would continue to deteriorate, and would then end up being diagnosed with intestinal cancer if they’re not diligent. I’m young, and the idea of being diagnosed with cancer terrifies me. I’ve lost family to the disease, and it is absolutely horrifying what they go through and I certainly don’t want to spend my mid-thirties commuting to UPMC for another chemotherapy treatment.  

​

The idea of a gluten free diet stems from taking out gluten containing food from your diet can cause you to lose weight because you’re not eating as many carbs. Now, people who are strictly following their ‘diet plans’ will order a beer with their gluten free salad they had to have because they ‘have an allergy’. No wonder restaurant staff hate it when I ask for gluten free options. The people who are following my medical treatment plan for weight loss purposes are lessening the seriousness that entails celiac disease. This is problematic for me because I can’t get safe food anywhere. Without safe options, eating out socially and being spontaneous is out of the question. Family vacations are planned diligently focusing on where my mother and I can find safe food, even going so far as to bring gluten free bread and baking mixes with us so we can at least eat a ham sandwich at lunch.

 

Now, as I’m writing this, it’s September 13, 2018. September 13th is National Celiac Awareness Day, and with that in mind, I wrote this article. Not only to bring light to what this disease is, and how this diet affects people, but to remind people that my disease’s treatment plan is not your weight watchers gimmick.