Moving Past Celiac Setbacks

As humans, sometimes we become obsessed with success. Success in our education, our social life, our job, and our relationships. Sometimes, though, to reach success, first there has to be a low point. For all those who have followed my three-day stay in the hospital and my nose's present love/hate relationship with its feeding tube, my low point is readily visible.

The night before I head back for college, though, I can't help but compare myself to the young, naive girl greeted by whoops and screams of present PLNU students on orientation day. Fundamentally, I'm the same person. I'm goofy, sweet, sarcastic, and hopefully optimistic (unless it's early morning, of course). Yet, the hospital and my week of rest has opened my eyes to a new side of me. The fearful warrior.

The warrior and her weapon - the nose tube!
I had no idea what to expect as a celiac when I walked onto campus. Gluten free food, hopefully? And there was food, but not enough of it. And I did have energy, but not enough to power a full day of classes, social activities, and late-night study parties. You see why I ended up at the hospital with malnutrition and vitamin deficiencies?

Now, I have a game plan. More snacks. Considering the lack of space currently in my dorm, they may have to be strung up with bungee cords from the ceiling to fit, but there will be snacks nonetheless. Next, a more personal relationship with the cafeteria chef. My stomach sours just thinking about navigating the red tape to speak with Chef Urs and set up my own meal plan, where I can call ahead for a pre-made gluten free goodie. But now I know that the salad bar, a few gluten free sides (beans? I'll pass. And squash? Squash that!), and the odd protein won't cut it in the nutrition department.

More meat, less fruit!
Because, honestly, if I don't conquer my food issues, my food issues are going to conquer me. When I went to the doctor today, I almost started crying before she began speaking. Because, as positive as I've tried to be, I'm tired of this tube. It's been a week since the plastic snake was introduced to my throat channel, and they still aren't friends. Scratch that - my throat has been (hoarsely) screaming bloody murder even as my stomach thrives on the 12 hour feedings of nutrients at night.

So, my doctor and I made a deal

The tube comes out tomorrow, but only if food - and a lot of it - starts going in. A week-long trial period. I've jumped from 88 lbs to 90 (watch out - Casey the bodybuilder is coming!) and by next Friday, I need to be at 93.

I can't express how happy I am to be ditching my tube in the trash can, but, even as my nose threw its Declaration of Independence party, fear bubbled in the back of my throat. As scary as it was to think of going to school rockin' a nose tube, in the last few days, that's all I've thought about. I've pictured it, finalized my explanations ("My dad's a Marine. I'm a government experiment" or "Bears. Avoid 'em. Or you'll end up with this") and texted my friends a warning. Now, even though it's for the better, my plans have changed again...and that's scary.

This scary times 10
The whole thing is scary, actually. I already have to catch up on tests, classwork, and dorm gossip. Thinking of missing a whole week of college classes? Freshman, don't do it! Food, as great as it sounds to my torn-up throat, at times feels like another complication. I've already tried being a healthy college celiac in the beginning of the semester. And I failed. What if I fail again?

And yet, despite all of the doubts attacking my mind, most of my brain is calm. Chillin' even. Because I've felt support and found inspiration in every individual who has touched me during my week-long journey from college, to the hospital, back home.

When I'm worried my body will give out on me again, I'll think of the nurses and doctors who revitalized my body and turned my hospital room into a temporary home. I won't lie and say I was "comfortable" in my hospital bed - an IV, nose tube, and chest wires aren't exactly cuddly - but they always made me feel safe, cared for, and positive, even when they told me bad news.

When I feel like celiac and college stress will break my spirit, I'll remember the thousands of comments that flooded GlutenDude's post and my blog, wishing me well in my time of need. I was called inspirational, beautiful, strong, and determined...and I will try to live up to these compliments every day.

Perhaps the experience I will repeat most often as a mantra, however, is that no matter what challenges celiac throws at me that day, I am out of the hospital. Because of my age, I was placed in the pediatrics ward as the oldest charge. One day, after a long visit by the doctors and an information overload, I grabbed my trusty IV pole like a walker and strutted out to the lounge that connected all the hospital rooms, nose tube taped to my face. As I made my rounds, though, my own frustration dissolved at the sight of bald children waiting for the their chemo session, toddlers with tubes sticking out of tiny bodies, and preteens texting around IV's

The fact is, I'm lucky. Even if I "fail" on solid food again and have to return to the feeding tube, I will still be lucky.

It's not a Cinderella story, but I'm no Cinderella

Yes, I have celiac disease and it is challenging. Yes, this is an awful time for a health problem to strike. But, instead of spending my childhood in a hospital, I'm stressing over college classes. 

Stress has never felt so good



Has celiac disease made you stronger? How do you stay positive? Comment below! 

Comments

  1. Hi Casey!

    Although I am a stranger, you need to know you are NOT ALONE. And you WILL get through this! My life is living proof that it is possible.

    Our stories are so similar it makes my stomach hurt. I stumbled across your story within the last week or so and I couldn't stop thinking about you. I shared the story with my husband and my family as well and they immediately thought I should reach out. I would love to be a resource for you as someone who has been through a strikingly similar situation and not only survived but thrived! However, I don't want to bombard you with my full story as a blog comment! If you would like to contact me you can feel free - stellmaj (at) gmail.com

    Just know I'm thinking of you and praying for you. Feel free to email me and we can chat some more. :) Take care and stay strong!

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    1. I would love to contact you and hear your story! Hearing about others' challenges and successes is my main source of inspiration for sure! You'll be getting an email from me shortly! :)

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  2. I can relate so much to your story, when I first went gluten-free after getting diagnosed with gluten-sensitivity I dropped a lot of weight (low of 93 lbs), not solely because I couldn't find options to eat and was adjusting to the diet, but more so because I was so afraid of what food could do to my body. Even though I knew gluten-free foods such as bread and pasta wouldn't hurt my body, I feared it would and just stuck to eating lots of fruits and salads.

    Over time though as my body began to heal, my relationship with food healed as well. There were definitely good days and days were I absolutely feared food, but I'm happy to tell you that after four years, I would now say that I no longer fear food, but would in fact consider myself a foodie! I still don't love eating, but love how food has allowed me to regain strength and health. The first step came when I wrote this poem and confronted all the my emotions about food, (http://bit.ly/15Cigp4), and the next step for me was getting back in the kitchen, since this was something I loved.

    Keep seeing the positives in a difficult situation. It will not only make you stronger, but it will take you so far in life.

    Continuing to cheer you on.

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    1. Thank you so much for sharing your story! As much as I hate to admit it, the mental block I've developed (food = pain) has definitely played a huge role in my weight loss. I'm hoping that now that some of my symptoms are finally residing, my mental frame will also heal. I can't tell you how happy this comment made me feel to know that I'm not crazy or alone.

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  3. EAT EAT EAT! I know you can do it! (coming from someone with major eating issues prior to her CD diagnosis) You rock! NO MORE TUBES, EVER!!!! (; ps. these GF (certified!) goodies are great, they pack a large protein and calorie bust too!

    http://shop.theprobar.com/PROBAR-Core/c/ProBar@Core

    xoxo -kate

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    1. PS, they are cheaper if you have an REI close! (10% off of twelve packs - and you can use a membership discount on them too!)

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    2. Thank you so much for the cheering!! Eating shouldn't be so difficult, but I must admit that it can be challenging at times for sure. I'll definitely check out the snacks - the more the merrier! :)

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  4. Casey,

    I was sick too my 1st semester of college! I remember how difficult it was to get around campus & get to know people & getting to class & feeling weak and everything. I was sick with a heart issue, not celiac related. I'm a senior at App State now and I can tell you that it gets WAY better & easier to adjust as you start to get stronger & healthier. :)

    Most schools have lots of resources & are helpful if you make sure you let them know you are going through a tough time - especially your profs! Don't be shy about this.

    A positive attitude can be a great source of energy until your body gets stronger & healthier, and it sounds like you've got a great attitude!

    Praying for you & hope you have a fun & healthy rest of your 1st semester! Good luck with everything!

    <3 another college celiac, Megan

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  5. I am sorry to hear about your struggle but you have to look at the bright side of things! I am also a college student suffering from celiac disease. My first year was horrible because I had not been diagnosed yet, therefore, I remember struggling to concentrate in class, being very tired, going to the football games and leaving early because of my severe stomach pains and rumbling stomach noises in class but now it's my second year in college and I feel great! With my gluten free diet nothing can stop me and neither should anything stop you! May God Bless you! and if you need any help contact me at florencia.m.carrera@gmail.com

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  6. "It is not the critic who counts; not the man who points out how the strong man stumbles, or where the doer of deeds could have done them better. The credit belongs to the man who is actually in the arena, whose face is marred by dust and sweat and blood; who strives valiantly; who errs, who comes short again and again, because there is no effort without error and shortcoming; but who does actually strive to do the deeds; who knows great enthusiasms, the great devotions; who spends himself in a worthy cause; who at the best knows in the end the triumph of high achievement, and who at the worst, if he fails, at least fails while daring greatly, so that his place shall never be with those cold and timid souls who neither know victory nor defeat."

    This quote came to mind today as I read your blog. Continue to "dare greatly!" Being vulnerable is a scary thing; I believe it is the only way to grow. You can do it, even with the set backs, you will do it!

    Love ya,
    Aunt T.

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