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A Letter to Myself When I Was Diagnosed With Celiac Disease

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I was diagnosed with celiac when I was 15 years old, in the 10th grade. Though I was relieved to finally have a name for the mystery illness that had affected so many aspects of my life and health for so long, I found myself entering a new realm of uncertainty, and largely fear. At the time I knew no one else with this condition and struggled to feel heard and understood. There are many things I know now that I wish I knew then and I hope that these words provide some comfort to a person who is where I was at three years ago.

Dear 15 year old me,

I just wanted to start this off by saying you’ll be OK. In every aspect of life, things will change and things will get better. You will eventually pass math, you will get that first kiss you so desperately want, and you will learn to live with this new disease you have. You will be OK.

I know right now, sitting on that couch in your living room in tears, there is a million thoughts running through your head and overall, a sense of fear. You know things will change, but you don’t know how or what.

I know right now, oddly enough one of the big thoughts running through your mind is in regards to how you’ll never drink a beer. Although you haven’t started drinking yet, you worry that you’ll miss out on the coming of age ritual that so many of your peers experience and speak of; getting drunk. To that I will say, worry not, child! There are plenty of gluten-free beers on the market, but hey, beer is kind of gross anyways. You’ll also find out that most vodka is gluten-free.

Now that we have those concerns, I’m going to let you in on a few things I wish I had have known when I was in your position.

Right now, in this time of change, you wonder when things will become normal again. You really worry that you will never get to be a normal teenage girl again. And here’s the thing to keep in mind – you were never normal, in the best way possible, and this is just another tiny little thing that will go into the making you who you are. As for your eating and lifestyle, to be honest, things will never really go back to the “normal” they were before, but you will soon find and settle into a new normal. When it comes down to it, you will find that the new normal is a way better life than you were living before.

You worry that celiac will change who you are, and on some level it will. There will be much more gain than loss. You will become much more resilient and learn how to advocate for yourself on a new level. This disease and the pain it causes you does not take away from who you are, but reassures you of your ability to overcome any challenge that comes your way. It cannot take away your quick thinking and wild sense of humor, nor can it rob you of your love for sport and your desire to make this world a better place.

My advice for you is that this disease can put you through hell and really beat you down sometimes, and largely that is inevitably, but how you deal with it is all up to you. Not to say you have to remain positive all the time, but do not let it destroy you. Shit happens, and I will be the first to tell you that when shit inevitably does happen, it is a hell of a lot better to laugh about it than to cry about it. Your humor will carry you through. Whether you’re making sarcastic comments about the clown who’s trying to comfort you at the hospital when you are just a little too old for pediatrics, or simply laughing as you vent to your friends about how that guy you made out with at the party last night gluten poisoned you with his beer soaked lips (and yes, this is a real thing).

Further, allow yourself to grieve about your diagnosis, as trivial as that sounds. For better and worse, this is going to be a change. Don’t stop yourself from feeling. Cry about it, write about it, and let it all out. Once you’ve done that, it’s time to move forward. Pick yourself up, and move on. This is not a challenge you can’t overcome.

You’ll find that this experience will show you how amazing the people in your life are. Your day will be made by the friend who upon hearing your diagnosis, went home and made you gluten-free cookies. You will appreciate the family friend who put you in contact with another, more experienced celiac. Years later, you’ll feel empowered as you become the mentor who welcomes a younger girl you know into the celiac club.

While you go through this change, take comfort in the things you already know and love. You will always find a sense of serenity on the ice and never forget the great release you get running through the forest when life gets tough. Writing is not only therapeutic, but it will also show you how far you’ve come when you look back on it later.

Overall, just know you will be OK. Remember who you are. I know it’s scary now, the change feels daunting and this whole thing just feels so permanent. I’m not going to lie, there will be some growing pains along the way. This diagnosis seems like a bad thing, but it will truly be one of the best things that has happened to you. You will finally get rid of the stomachache that you have had for the last five years. You will finally be able to clear up the brain fog that’s been weighing you down and hurting you academically. The pain, both physical and mental, will go away. You will finally become the healthy version of you that you forgot existed. You will learn to love life in a way you didn’t know was possible.

So, my child, onward up many! Your future will be full of ingredient reading, questioning waiters, and carrying a drugstore worth of stomach medicine in your backpack. More than that, and as cliche as this sounds, your future will be full of adventures, laughter, new friends and delicious gluten-free pizza! Living with celiac is much less a destination than it is a journey. You will meet so many people and learn so many things as you travel through life. It will be wonderful.

And remember, if all else fails, cheese is gluten-free. Eat it. All of it.

Your Future Self

Getty Image by MangoStar_Studio

Originally published: February 23, 2018
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