Saturday, June 14, 2014

it's happened again

It's happened again. Someone else I know is "going gluten free."

This isn't my picture, though that would be awesome if it were.

Now let me preface this with a statement: if you have symptoms that are similar to the ones I have previously described and you feel that cutting out gluten might alleviate them, please ask me about it. I'm happy to share my experiences and/or offer you some bits of knowledge I had to learn the hard way throughout this process. If you want to cut down on (or cut out) grains because they simply aren't the healthiest of food options, that's cool with me! I'm happy to support you and I'll probably even ask you if you want to swap recipes. If, however, you are going gluten free to lose weight (which won't work because processed gluten free products tend to be even less nutritional than their gluten-filled counterparts) or because you heard about that gluten free diet on some talk show and want to try it and tell me all about it, thinking that we now have some magical connection, I'm going to struggle with whether or not I should tell you how I really feel about your decision. On the one hand, it's not always considered polite to speak your mind when it's critical and judgmental of another's actions. On the other hand, though, I'm tired of smiling and nodding, knowing that your actions affect me in a negative way and that you probably have no idea.

What I really want to tell you is that you are part of the problem. I realize that this may sound harsh, but somebody needs to tell you this. 

You may not believe this, but your actions are contributing to the stigma associated with gluten and also to the belief that gluten free is not a real necessity, but only the latest fad diet. You are the reason that gluten free is American society's new laughingstock and the reason talk show hosts and comedians spend hours writing material to make fun of our gluten free community. You are the reason people groan and/or roll their eyes when I tell someone I can't eat gluten. You're a huge part of the reason many restaurant chefs and servers don't take people seriously when they ask for a gluten free meal, and you're the main reason companies feel the need to plaster "gluten free" all over their products (when often, the products aren't actually gluten free enough to be safe for people with Celiac disease). Your actions have consequences - consequences that you will probably never see or feel, but we do, all the time.

What I really want to tell you is that you have no idea what gluten free really entails and that you will probably never have go through what Celiacs have to deal with every single day to ensure their health and safety.

I want to point out that you will never have to worry about people not believing you when you say you need to have a meal that's gluten free. To have people who think your condition is just a fad (and let's face it, you don't even have a condition). To have the people you trust with your food add gluten-containing ingredients to your meal just to see if you actually notice and/or react to it. It's a horrible ordeal to go through and I wouldn't wish it on anyone. You would never see someone pulling this kind of prank on someone with a peanut allergy or diabetes, but it happens to Celiacs way too frequently.

I want to remind you that you will never have to worry that a gluten-y crumb hidden in your food will make you sick for the next month. I've had this experience and it isn't pretty. Trying to go on with your life, going to work, and pretending to be okay with your family and friends and co-workers (and students) while all you want to do is hide under your sheets because you feel so sick and haven't slept in weeks...well, put plainly, it's no easy task.

I could fill you in on the research process needed for just about every single item you buy. Just about every restaurant I've eaten at since my diagnosis in addition to every food purchase, every makeup purchase, soap purchase, and even laundry/dish detergent/lotion/sunscreen/chapstick purchase has involved research in the form of internet searches, gluten free apps, phone calls, reviews from others, and/or emails to the companies themselves. If I had a dollar for every email I've sent to inquire about a product's safety and production practices, I would actually have enough money to easily buy the gluten free food that is so expensively priced!

I could let you know how exhausting and sometimes uncomfortable social situations have become for many of us. American celebrations tend to revolve around food, and Celiacs tend to be left out. It's not that we expect others to go out of their way for us. It does, though, take a lot of planning to bring something along that will be safe for us to eat, especially when the party or celebration is at someone else's home. It takes organization and time to call a venue ahead of time to figure out whether or not we are even allowed to bring our own food, and then how best to do it. It takes energy explaining to people why we aren't eating, or why we had to bring our own food. It takes patience to describe over and over again what we can eat, what we can't eat, and why even that gluten free dip on the table isn't safe for us because other people have contaminated it. But most of all, it's lonely to be left out. It sounds juvenile, I know, but you try being left out of almost every celebration your friends or co-workers have for the next year and tell me you don't feel a bit ignored and singled out. It's happened to the best of us and we've had to learn how to adapt and try not to take it personally.

I could call attention to the fact that you will probably never have to argue with someone who openly judges your food choices while you try to explain that this is the only way you can live safely. Arguments like these happen all the time, on blogs and on Facebook, at grocery stores and with doctors. That doesn't even include the eye rollers and smirkers who might be part of your family or group of friends or work staff. And can you really blame them? People are SO tired of hearing the words "gluten free." I'm tired of it and I actually have Celiac, which means I will have to deal with those words for the rest of my life. I can't imagine how those who have never had to deal with it on a personal level feel when they hear about it...again.

I could point out the fear. You see, you will most likely never know the anxiety that most of us have. Yes, there are neurological symptoms like OCD and panic attacks that often go hand-in-hand with Celiac. But what I'm referring to here is the worry that it took so long to get diagnosed (the average is six to ten years) and the knowledge that this time has caused a lot of permanent damage that may or may not have already manifested itself. The understanding that you are likely to develop other auto-immune disorders and/or food allergies at some point in your future. The reality that you may have to deal with your children also having Celiac, or even the possibility that you may no longer even be able to have children.

You see, these are things that you gluten-free-fad-dieters don't think about.

For you, it's just a diet. For us, it's life. 

And so I ask you to stop. Stop being a lemming. Stop following the trends without thinking about the consequences. Stop making a big deal about your gluten free diet and then posting pictures of the pizza you ate because "it's just so hard to be gluten free all the time." You are hurting our community. You are causing damage to the people who have no choice but to live gluten free. Please, just stop.