Friday, September 27, 2013

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! 

Monday, September 23, 2013

Welcome Home!

Homecoming. Nothing is sweeter than returning home after a long visit away, whether as a Marine serving months overseas or a college student escaping the demands of university for the holidays. For me, though, my house never looked as welcoming as it did yesterday afternoon when my hospitalization finally ended.

Right before I left the hospital - YAY!
Before I write any more, I want to say thank you. Thank you to GlutenDude, a strong voice in the celiac and gluten free community, who spread my story all over the globe. Thank you to the hundreds of readers who have flooded my blog and his site with funny, thoughtful, emotional, sincere, inspirational and every other type of comment imaginable. When I started this blog as a way to release my frustrations and share my successes with celiac disease, I never imagined people would read it.

I never imagined that people would connect with me, and have me connect with them in return. But you guys did.

Okay, back to the important stuff. Me! Kidding. Overall, I'm feeling decent. As painful, challenging, and emotionally draining as my hospital stay was, they transformed the zombie that walked into their doors to a hopeful college student walking out. I've spent most of today sleeping, milling around, and reflecting in pure disbelief on all the news I received in the last 72 hours. But, as much as I already dislike the feeding tube and missing school, I see a light at the end of the feeding tube. How can I not when literally hundreds of people are lighting up my world with their digital support?

I'm sending love back!

In the days ahead, as I slowly start to recover with my parents at home and plan for my return to college next Monday, you will hear from me again and I will keep reading the comments pouring in. Some of you say I'm an inspiration or that I made you cry. My response? Ditto.


Love you guys! Isn't the celiac community awesome? Comment below!

Friday, September 20, 2013

The Hospital: Heaven and Hell

I always like to imagine that doctors, teachers, and other authority figures give nicknames to their subjects. The girl who always writes her essays in bright, glittery inks transforms into "Sparkles." The football player who protects the nerds earns the misnomer, "The Big Friendly Giant." If my hunch is right, although I've only been here for one night and half a day, the hospital staff probably calls me "Jekyll and Hyde" since I'm either cracking jokes or crying enough to produce the next great flood.

I've tried to smile at all the doctors and nurses who've walked into my room, clipboards in hand and questions on the tip of their tongues. My medical history. My comfort level. And, my favorite, "How are you doing?" Usually I'll just say, "I'm here" and leave it at that. After all, how great can I be doing if I'm stuck in a hospital bed?

My room for a bit...
Truthfully, not very great, before or during my hospitalization. I can deal with the clusters of wires stuck to my chest like a Frankenstein experiment. I can deal with the IV stuck into the side vein of my wrist. The nose feed, though, is killing me. Literally, I look like a movie's zombie extra whose brain is slowly dripping out through one nostril.

Besides the discomfort, besides the blood, besides all of the anxieties that accompany a foreign object sliding through my nose and into my stomach, the worst part is how wrong this whole thing is. As I laid on the bed crying to my mom from the pain of the nose feed last night, all we could say was, "How did we get here?" How did a fit, soccer-playing foodie turn into a malnourished twig terrified of food?

I should be in college classes right now, watching the second hand of the clock tick closer to the freedom of Friday nights out with friends. Tonight, I should be relaxing in my dorm room, shrieks from midnight surfing expeditions and volleyball games drifting in my window and urgings from my dorm mates urging me to abandon the homework and help pierce Sidney's ears. My biggest worry should be whether or the not the cute sophomore seated next to me likes my personality or my homework grade, not how everyone will react when I walk onto campus with a tube taped to my face.

Modeling my lovely feeding tube

As a celiac, I already eat gluten free while my friends chow down on pizza. I already dodge culinary social events with the footwork of a ninja. And now the doctors tell me a feeding tube will become my newest fashion accessory around my college campus.

That broke me.

Because you know what? I'm tired of being different, tired of my health setting me apart from others. I don't want my identity - the sick girl - to be established before my mouth even shoots out a joke. 

And it will be. By the quizzical stares on campus as I cross the street, white tube shining brightly in the morning sun. By the questions immediately after an introduction. By the judgements of the college peers and professors who interact with me ever day. 

And this fact - the fact that I will be judged by the tube in my nose - is freaking terrifying. "Freaking" be a slightly ironic phrase considering "freak" is the only word constantly fluttering through my mind. But, as hysterical as I feel, in some deep pit of my stomach there is calm. A quiet, reluctant acceptance

It will be okay...eventually

Because I have people standing behind me. My family, including my mom who is hugging me as I write this. My readers, who have flooded my email with of motivation and prayer. Perhaps most applicably, though, the girls waiting for me back at my college dorm

When I suffered a meltdown after hearing about my upcoming hospital stay, they surrounded me in a group hug and postponed dinner to cuddle and watch TV. The day I left, they slid cards and homemade gifts under the door, along with promises to keep me in their prayers. And when I posted a picture of my hospital bed, they made me laugh by linking the music video, "Eye of the Tiger."

A few of my going away presents...
As awful as my recent health troubles from celiacs have been, though, it's also forced me to open up and bond. These girls have seen me at my most tired, my most irritable, my most vulnerable and they have loved me through them. I know no matter what shape I return to school in - weak, strong, or even attached to a feeding tube like a cyborg from a science fiction novel - they will support me. And with that in mind, walking around campus as a tube face is a little - just a little, mind you - less scary.


Have you ever spent time in a hospital? What is your celiac support group? Comment below!


Thursday, September 12, 2013

Going with the Flow: Liquid Diet

Imagine a juggler with three batons poised perfectly in the air above his head. Now, add a little fire on the heads of all three. And, of course, a hungry tiger to avoided while keeping those lit matchsticks flying high in the sky. This is basically what I feel like after two weeks into college as a gluten free celiac.

Now, I already posted some about my life in college. The cafeteria, with its imperfect but pretty dang tasty food compared to the packaged cardboard sold at common health stores. The social scene, where I'm continually playing the "look-don't-touch" card and munching down on my own gluten free munchies during midnight burrito runs and fro yo adventures. The fact is, since this last week, the cafeteria and restaurant food is the least of my problems.

My stomach and I have what I'd call a hate-hate relationship. It doesn't like what I put in it - gluten free, paleo, healthy, or not - and I don't like the aching pain and burning volcanoes of acid that erupt minutes after I chow down. Well, the symptoms that started out as slow healing and an annoying dust bunny under the bed has mutated into an army that's stomping all over my college experience.

My college experience isn't like movie night...
Because, right now, I'm "that girl." The 87 lb girl other people touch and say, "Hon, you gotta eat some protein" at the same time as they complain about their "fat" stomach. The girl who has to explain to every person that offers food that she can't eat while saying, "But I'm not anorexic, I promise!" The girl who pants so loudly after climbing stairs and walking to class that soccer practice seems like a made-up memory.

And then, one week ago, the day before my 18th birthday, came the emails, beeps and dings accenting the dread building inside my stomach as I started to read. Healed villi. Good. Continual inflammation in the stomach. Bad. Very bad. A liquid diet for three months on the doctor's orders. If I failed that? Two choices: a nose drip, or a hospital stay. Not mutually exclusive.

I stared at the screen and started to cry. 'Cause you know, it's hard enough being gluten-free in college. It's hard enough wiggling around the cafeteria crowd to explore my three pans of gluten free food sides and live near the salad bar while my friends devour specialty pizzas and mexican burritos without a second thought. It was my eighteenth birthday, dang it! I was supposed to be throwing caution to the wind, making bad decisions, and celebrating my newfound freedom. Instead, I was stuck planning to live off of advanced baby formula. Talk about a bad birthday present.

Happy Birthday to Me!
A week into my new temporary lifestyle, though, and I have something to say: I'm alive. I'm struggling, I stare at my friends' "normal" lives with puppy-dog eyes and drool, but I still have one. The liquid diet hasn't been easy - in fact, it's kinda sucked. When I first saw the cans my protein drinks are packaged in, I laughed and joked, "So I'm a dog now?" From the can size to the shiny labels pasted on the side, it fits canned dog and cat food to a T. After two days of extreme nausea and stomach pain, I've switched over to juice packs and protein mixes meant for kids 14 and younger. At least I'm on the human side!

Sometimes, when I'm feeling down and frustrated, I ask why. Why was I chosen to have celiac? Why are my intestines not healing compared to the norm? Why me? Why now?

As my stomach sloshes full of sugary drinks and anti-nausea medicine, though, I've found an answer. Because I can handle it. Because it has solidified the bonds between my dorm buds and I as they support me even without entirely understanding my screwed-up stomach. Because now I literally drool over gluten free foods, cousins of cardboard or not.

My "last meal" - Chick Fil' A, I miss you! 

Right now, I'm juggling a lot. By November or earlier when I'm hopefully healed, though, balancing a regular college life of social and academics will be a breeze. That fire-juggling, tiger-evading clown's got nothing on me.


Have you ever heard of a celiac going on a liquid diet? What were your struggles to heal? Comment below!


Friday, September 6, 2013

Celiac Disease and the Roommate

Dealing with a roommate in college is hard enough without worrying about whether their food is going to kill your intestines. How do I deal? Check out my article on Celiac Central all about it, college worries, and so much more!

http://www.celiaccentral.org/college/gluten-free-college-blog-series/sending-text-talking-celiac-disease-new-roommate-10229/

Monday, September 2, 2013

Gluten Free Cafeteria Grub

Everyone fears something. Spiders, heights, or in Harry Potter's case, the-man-who-shall-not-be-named. For me, though, ever since my celiac disease diagnosis, I've feared the one thing I used to love: food. So my first venture into PLNU's cafeteria was more than just a lunch. It was an expedition.

My cafeteria...dun dun DUN!
Now, I've already mentioned in some of my other posts that I've talked to the main chef about my needs and the options this cafeteria offers. Basically: the salad bar and the gluten free, shellfish free, lactose free section tucked in the corner of the kitchen.

Before I entered the cafeteria, I my hands started sweating when I thought about the salad situation. Since I walked out of the doctor's office with "celiacs" stamped on my forehead, I've lived like a cow: chewing grass, lettuce, and spinach at least once a day. You can imagine how high I jumped when I finally spotted the salad bar. Separate baskets, bottled dressings, and not one crouton to spread any gluten cooties!

So, on my first day, I ransacked the salad bar first and beelined towards the fruit. As I twisted past the crowds of college kids filling the cafeteria, each arm weighed down with plates of pizza, pasta, bread, and the rare vegetable, my list of "safe" foods danced through my mind. Fruit, potatoes, salad, vegetables...they echoed in my head like an annoying kindergarten song.

My first cafeteria meal...
When I walked into the cafeteria that night, though, I paused in my tracks and almost caused a traffic jam behind me. Even with the throng of kids, I could see the gluten free section just fine. And it was entirely nothing-unless-you're-craving-some-metal-pans bare. I almost marched out of there, too frustrated to bother. Except, my stomach was growling, dang it, and I wasn't trudging across the campus, up the hill, and down five flights of stairs without cramming my face with something gluten free and delicious!

So, I asked the server, who asked their supervisor, who asked the main chef where the gluten free dinners were hiding. Basically, I just stood awkwardly, my empty plate shining like a beacon in the cafeteria, shouting, "Weirdo! Picky eater! Go around!" Which people did - go around me that is. And then he reappeared, promising that the baked chicken, sliced potatoes, and steamed veggie dinner was certified gluten free. For a second, I kept standing, the nausea of worry (What if the food's toxic? What if he's wrong? What if that plate of grub glutens two days before classes start?) almost kicking my hunger to the gluten-free curb. But, sometimes, as I'm learning, we have to take (cautious) risks. If I'm ever to have a semi-normal dietary life, I need to trust the chef. If he says that delicious brownie is gluten free, I've gotta chomp that sucker down until a zombified week of stomach pain proves him wrong

My "risky" dinner

I dug in and haven't stopped since.

This isn't to mean that eating gluten free at the cafeteria is easy. I just devoured my third meal in the caf, lunch, and it's always an adventure. Sometimes, I don't like what they offer (steamed carrots - yuck!) Sometimes they throw pieces of a regular meal at us and we end up with a plate of mismatched cousins. Today, for instance, mexican rice, beans, corn, and baby potatoes ruled over the gluten free section. No tortillas, no chicken. No burrito. With a side salad and a slice of watermelon, though, my taste buds liked it just fine.

Mismatched and delicious!
When I entered the cafeteria for the first time, I had no idea what to expect. After two days of grazing the cafe, now at least I know that I can survive! The kitchen could offer more proteins, more variety, and more knowedlgable staff. And, as my friend once said, I could take advantage of my "special" self and reign over the cafeteria kitchen with a gluten free hammer. For now, though, I'm happy. I can eat, I can socialize while eating, and I can avoid the gluten-filled landmines around every cafeteria.

Maybe food isn't so scary after all.


What are your cafeteria's gluten free options like? How do you eat gluten free in college? Comment below!

Sunday, September 1, 2013

College as a Celiac: My 2 Day Twisted Fairytale

Everyone has that fairytale version of college: the cool crowd you'll join, the classes you'll ace, and, of course, the food you'll stuff yourself with. As a girl with celiac disease, though, I knew my fairytale would be a little less than perfect. And, while these past two days have proved me right, I've discovered a plot twist: I'm alright with that.

My first gluten-breathing dragon sprayed me when, after a long three hour unpacking period, my family and I finally headed for lunch. Hungry. Starving, actually. When I stepped outside and smelled the toasted buns and grilled meat, saw the assembly line of deli meat, salad, and brownies, I wanted more than anything to join the throng of students stacking their plates. After all, it looked delicious...except that the gluten-filled bread was acting a little too cozy with the meats and lettuce for my taste. So we climbed the stairs, the hill, and the roads to reach the safety of the cafeteria. Only, safe wasn't exactly the best description. My choices: meats placed right next to breads, salad with croutons, or fruit.

As I've told before, though, in college you have to be your own advocate. So we "advocated" rather loudly until Chef Urs, the main PLNU cook, finally met with us inside the cafeteria. My stomach grumbling in the background, he gave the grand tour (this is where the food isn't, but will be), the golden ticket (a card with his personal phone number to order ahead), and a promise to make my tummy as happy as possible. In a rather anticlimatic end to this adventure, I devoured the leftover homemade gluten free pizza I stashed in my dorm fridge hours before while my parents chowed on sandwiches from the line.

Always bring food from home just in case!

I did eventually, however, get to try PLNU's gluten free grub. The cafeteria isn't open until tomorrow because parents are still roaming the halls, so instead the school serves food in twenty buffet lines outside. Picking out kids with food allergies is pretty easy: just look for the loners passing all the tables until they finally reach the line in the back where all the gluten free, lactose intolerant, and vegan/vegetarian meals are stashed. Splitting up from my friends to grab my own food? Talk about embarassing! But the meals were good. Not exactly restaurant-worthy, but fingerlickin'. Even better, Chef Urs mimicked the regular menu as closely as possible: on spagehetti night, we chowed on rice lasangna and when we packed tacos with chicken, rice and peppers, others munched on burritos. The best part, though? Meeting the other kids who were gluten intolerant, lactose intolerant, or suffered food allergies.

My chicken tacos with rice and beans

I love my friends who chow down on everything in sight, but people who can relate, and I mean the my-stomach-explodes-after-that-food-too kinda relate, make living with celiac disease so much easier. During the ice cream social last night, when I stood empty-handed compared to everyone else's heaping bowls of Ben-and-Jerry's, everyone asked me why I didn't eat. I'm already skinny - why watch my weight? What's an ice cream social without ice cream? Except for one girl - Kelly - who is gluten intolerant and avoids dairy, just like me. Instead of indulging in ice cream, we swapped stories of the best gluten free bakeries nearby, our favorite GF foods, and how we both plan to survive in college.

At the same time, though, like I've always said, celiac disease is not going to limit my life. It can limit my food choices, but not my friends, my classes, or my social calendar. Maybe that's why I grabbed my jacket when, at ten thirty at night, my RA called out, "Burrito run!"

Technically, I've been an official Point Loma Sealion since my dad drove our overstuffed van past the gate and onto campus. Technically, I've been an actual college freshman since orientation - a deadly combination of academic speeches, "get aquainted" parties, and religious events that add up to 12 hour days - began. And yet, the whole "I'm a college kid" didn't hit me until that night. It didn't hit me until, with a handful of girls squished up beside, under, and on top of me, we ditched campus and headed to Adalberto's for our first midnight burrito run.

Burrito runs are a staple at Point Loma and I could definitely tell. Even though the place is nothing more than a small, slightly worn shop tucked in the corner of a group of stores, it was packed with PLNU students at 10:30 that night. Of course, with all of the stress and dietary changes that hitchiked with college, I didn't actually order a "midnight burrito." And yet, as I sat around sipping my water and drooling over the piles of carne asada nachos and fries, shrimp burritos, and, most well known, the french-fry stuffed California burrito, I felt at peace. Would I have liked a peice of that? Heck yeah! Did having to turn down offers to share a delicious wrap ruin my night? Heck no!

I drooled over this so hard...
Instead of soaking in grease and fat, I soaked in the atmosphere. I chuckled at the hoards of PLNU boys with burritos in one hand and trouble in the other horsing around at the plastic table across the aisle; I looked at the girls whose butts and legs and elbows had poked me in the ribs as we squeezed enough people in one sedan to match (or even beat) a clown-car routine at the circus. My RA, Sarah, took pictures of all of us perched at the tables - mismatched teens suddenly tied together by the numbers posted on dorm doors - and my smile is genuine. I went on the burrito run not to eat, but to socialize and embrace the lifestyle of a PLNU college student.

My life in college will never be a fairytale with perfectly packaged gluten free meals waiting to save the day. And that's okay. I can socialize. I can have fun. I belong. Just two days in, I have met amazing people, listened to life-changing speeches, and realized my calling as a PLNU Sealion. And there's no fairytale - celiac disease included - better than that.

Two days down and so many more to enjoy!


Are you a celiac in college? How is your food situation? Did it get better with time? Comment below!