To the Girl Who Wished She Had Celiac Disease so She Could Be "Skinny Like Me"

I met you my first week as a college freshman. You know what I thought first when I saw you? "Wow. She's gorgeous." Long, thick blond hair; clear skin; curves that were sure to catch even the upperclassmen's attention. She was everything I wasn't. She was, in some aspects, everything celiac disease had taken away.

You see, I'd only received my celiac disease diagnosis a few months before. Some girls get a surprise serenade from a cute boy asking them to prom; the week before my senior prom, I got a call from my doctor instead. In that afternoon phone call, a few simple words changed my life: "celiac disease" and then "gluten free diet." I spent the summer before my freshman year of college shopping for notebooks and dorm furniture and a new backpack - but also learning how to eat a diet I'd never even heard of weeks before.

To the Girl Who Wished She Had Celiac Disease so She Could Be "Skinny Like Me"

"I didn't expect any college student to want to be me."

In fact, the day before I moved into my college dorm, I underwent my second endoscopy and my first colonoscopy. I wasn't healing normally on a gluten free diet, and my doctors needed to find out why. Honestly, I didn't even have time to get nervous about how my college roommate would handle my "special requests" (AKA my own mini fridge, my own microwave and half of the room, all covered in "gluten free" sticky notes). There's only so much you can think about when you're trying not to go mad eating nothing but chicken stock, jello and the special "colonoscopy prep" cocktail. 

I don't say all of this to make you feel bad for me or to get pity. I just want to help explain why I didn't expect any college student to want to be me. At that point, I was 100% gluten free but still struggling to heal...which meant I was down to 85 pounds at 5'3". While my fellow freshman hall mates devoured pizza and hamburgers and whatever meals happened to catch their eye in our college cafeteria, I scoured the salad bar and the small "gluten free" section, trying to find something safe and filling. I ate a lot of salads.

To the Girl Who Wished She Had Celiac Disease so She Could Be "Skinny Like Me"
The only kind of pizza I enjoyed in college...

I had a mouthful of lettuce when you made this comment - a comment that occurred four years ago but still sticks out in my mind. We were sitting together in the cafeteria, along with all the other girls from our hall. It's a typical freshman strategy: safety in numbers, we think. And, apparently, you care about numbers. 

How do I know? Because, even as you bit into that slice of pizza (pepperoni with extra cheese, which reminded me of the Papa John's pizza my family would order some Sunday nights), you said it: "I wish I could have celiac disease so I could be skinny like you."

At the time, I laughed it off. I chuckled, stabbed at another piece of wilted lettuce and said, "Well, I'd trade you ten pounds for a slice of that pizza."

To the Girl Who Wished She Had Celiac Disease so She Could Be "Skinny Like Me"
THIS is what my "skinny" body really looked like...

Now, though, I'm done laughing. I know you didn't mean any harm. You were - maybe still are - just a victim of the societal beauty standards that proclaim skinny is best. However, I'm now four years older, stronger and more experienced. And this is what I wish I had said to you - and what I wish everyone would know about celiac disease.

"I wish I'd told you that, as sick as I was from celiac disease complications, your mindset was even sicker."

I wish I had told you that not everyone with celiac disease is skinny. In fact, "celiac disease weight gain" is a popular Google search because it does happen relatively often. Some people diagnosed with celiac disease are overweight. Celiacs can also gain weight on the gluten free diet, either because their body is finally absorbing nutrients or because they load up on gluten free alternatives to old foods. So don't assume that celiac disease will lead to weight loss - or that you must experience weight loss to receive a celiac disease diagnosis. 

I wish I had told you that celiac disease is so much more than an "excuse" to eat healthy. Celiac disease is a chronic autoimmune disorder. Undiagnosed, celiac disease can cause infertility or miscarriages, cancer, other autoimmune disorders and more. And eating a celiac disease diet is much more complicated than just going gluten free. Let's use an analogy from a recent edition of Gluten Free Nation magazine. Imagine cutting up one piece of bread into 7,300 pieces. Just one of those tiny pieces can sicken and cause dangerous intestinal damage in celiacs like me.

To the Girl Who Wished She Had Celiac Disease so She Could Be "Skinny Like Me"
After I was hospitalized...

I wish I had told you that, as sick as I was at the time from celiac disease complications, your mindset was even sicker. It's sad - scary, even - that girls like you are often tricked into valuing appearance over health. There is nothing glamorous at weighing 83 lbs at 18 years old and having to be hospitalized and fed through a feeding tube for two weeks. Who cares if you're "skinny" if you can't live fully enough - or, even more seriously, long enough - to enjoy it?

"I've learned how good it feels to be healthy...and I want every other person to have the chance to savor that same feeling."

I'm sure that a lot has changed in the four years since these words escaped your lips. We've both graduated college, and you're probably experiencing your share of life milestones, as am I. All I have left to do is to share a few hopes. I hope that you learned more about celiac disease from the time you spent at college with me. I hope you love your curves and your thick hair and all of the other physical signs that your body is healthy and thriving.

To the Girl Who Wished She Had Celiac Disease so She Could Be "Skinny Like Me"

And I hope you never again wish to have celiac disease so you can be skinny. First, because one doesn't necessarily lead to the other. And second? Because I've learned how good it feels to be healthy...and I want every other person to have the chance to strive for - and savor - that same feeling.

*Also found at Wine'd Down Wednesday, Wow Me Wednesday, This is How We Roll, RunningWithSpoons, Share Fest, Dare to Share*

Have you ever received rude or ignorant comments about celiac disease or another chronic illness? How do you reply?

Comments

  1. This is such a great post! I haven't receive ignorant comments about chronic illness - but my brother has! For a long time, he kept getting sicker and sicker and doctors didn't know what was going on with him. One time, he was at the hospital and the nurse was putting a camera down his throat via his nose - not fun - in hopes of figuring out what was going on. Trying to make conversation, the nurse asked him what he did for work. My brother said that he's been to sick to work recently, and she said, "Lucky!". I promise you, my brother (who is still not well - and that was 2 years ago!) would give ANYTHING to be in her shoes. I'm sorry about what you went through, and I'm sorry that so many people go through it so often! This post is a great encouragement for me to be careful with MY words. Thanks for sharing your story!

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    1. I'm so sorry to hear of your brothers' struggles and I'm sending lots of healing thoughts his way! Most people don't mean anything bad by their comments, but it can definitely feel hurtful at the time. Thank you for commenting and for your kind words <3

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  2. Nice post. I think healthy trumps all- regardless of our body composition healthy literally trumps all. And a specific diet (or restriction) doesn't mean that you're "healthy". It sucks because we still strive for skinny when it reflects so little..

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    1. For sure! I LOVE your point: "It sucks because we still strive for skinny when it reflects so little.."

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  3. Great read ! I'm sure she didn't mean any harm but sometimes people say things that can hurt without realizing it. Thanks for sharing

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    1. So true! It reminds me to be careful with my words!

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  4. Amen sister! I have a lot of autoimmune issues along with food sensitivities and often hear similar comments. My response is usually that I don't wish any of these illnesses on anyone and that I would trade to be healthy any time.

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    1. AMEN! Love your response to comments like these, too.

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  5. you are an inspiration! I would agree that there were people who care much of their appearance than health, its sad truth but that's reality. Sometimes they joke about having sickness to be skinny and sexy without realizing enough what their words would really mean.

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    1. Thank you for the kind words. And it's so true that people don't realize what being "sick" can really mean beyond being skinny.

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  6. Wow. I'm so sorry that this happened to you. When my brother first married his wife, she had undiagnosed celiac and was so tiny, we couldn't even find clothes that fit her. She was beautiful then, as she's always been, and she's still just as beautiful now that she's been able to put on quite a bit of weight following a gluten-free diet. She felt so crummy all the time; it's something I wouldn't wish on anyone. So I feel sad for your classmate for having such a distorted sense of what it means to be "beautiful." I hope she has a healthier relationship with her body now.

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    1. Thank you for sharing your story - and let me just say that your love for your sister and law shines through your comment. I'm sure that having the support of you and the rest of your family meant a TON to your sister and law. And I hope the girl I refer to here has a better understanding of her own beauty too!

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  7. Oh my gosh, this is such a great post girl. I'm sorry about this comment though I have to say you handled it really well with your response. I often times have reflected back on comments and wished I could say something different. In that moment you could have really impacted that girl's life for the better - maybe setting her on a more positive track towards a healthy mindset but hopefully she realized later how wrong she was to say what she did. That being said, I can't imagine how college was for you - always having to avoid what everyone else is eating and sticking to the salad bar. I've gotta say though, you are so positive and powerful because of it. I'm always inspired by you!

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    1. Awww thank you so much for the kind words, Kat. It really means a lot from a gluten free badass like you! And I definitely hope that, if I didn't change at least that girl's view of beauty and body image and the power of words, I can help other people who read this consider their own views of all of those subjects. <3 Stay awesome girl!

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  8. This is an excellent post. It was a pretty strange thing for that girl to say! She cannot have been thinking carefully before she spoke! :(

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    1. She definitely needed to think more before she spoke!

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  9. I had a "friend" tell me I was lucky to be skinny. Before I got diagnosed with food intolerances. I have put some weight on because I found food alternatives. This person told someone they were lucky to have hyperthyroidism. Some people don't realise how stupid their comments are. As if being skinny means healthy.

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