I Have Celiac Disease...but a Gluten Free Diet Wasn't Enough

When you research celiac disease treatments, you'll find one answer: a cross-contamination free, gluten-free diet. And, although clinical trials are presently testing other treatments for celiac disease, a magic pill isn't hitting the market anytime soon. But what happens if you're diagnosed with celiac disease and go gluten free like your doctor orders...except this celiac treatment doesn't seem to work?

It's a scary question, but one that I know all too well. Why? Because I have celiac disease - and I needed more than just a gluten free diet to heal from my celiac complications.

Here's my story of what happens when a gluten-free diet doesn't work...and my message to every celiac still struggling on the typical "celiac disease diet."

The Diagnosis

On average, it takes six to ten years for someone to receive a proper celiac diagnosis. Thanks to a dedicated doctor, I got "the call" only a few months after my symptoms (acid reflux, stomach issues and random weight loss) started popping up. When my doctor first said "celiac disease," I had no idea what she was talking about. I didn't even know "gluten" was a real word! Yet, even as another chronic illness was added to my medical chart, I couldn't help but smile. I wasn't crazy! There really was something wrong with me! And it could be fixed!

Around one week later, I underwent my first endoscopy. The walls of my intestines looked as smooth as the medical bracelet around my wrist, gluten having destroyed all of my villi. It was official: I had celiac disease. One meeting with a nutritionist later, I was sent out with a "gluten-free gift basket" in one hand and a list of "gluten-free" and "not gluten-free" foods in the other. I set up a follow-up appointment with my gastroenterologist for one month later, but no one expected any issues. Adjusting to a gluten-free diet (the year of my senior prom, no less) would be challenging. But if it would make me feel better, I was 100% ready to kick gluten to the curb.

Little did I know that recovering from the damage celiac disease had already caused wouldn't be nearly that simple.

The Setbacks

I was diagnosed in May of 2013. By August, I was still losing weight. It wasn't that I didn't want to eat; I didn't feel like I could. My stomach still rebelled against most foods, even when they were certified (or naturally) gluten-free. I tried eating paleo. I tried eating healthy gluten-free foods, and I tried just shoveling in the calories. None of it was working.

Two days before I moved into my college freshman dorm at Point Loma Nazarene University, I spent the morning in the hospital for my second endoscopy and first colonoscopy. Three weeks into my first college semester, I was "that girl." The girl who was losing the Freshman 15 that everyone else was gaining. The girl who panted so loudly after walking across campus that soccer practice seemed like a made-up memory.

So, when my email filled with messages from my doctor only a few days before my 18th birthday, it wasn't a surprise. My colonoscopy images were in. Healed villi. Good. Continual inflammation in the stomach. 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.

The Liquid Diet

I enjoyed a birthday dinner at Chick Fil A and then filled my mini fridge with the protein drinks my doctor prescribed. I lasted two days on the first variety. You start to wonder just how good a gluten-free protein shake can be for you when it permanently stains the inside of your metal thermos...not to mention keeps you constantly nauseous and in extreme stomach pain. The second brand was better: allergy-friendly juice packs and protein mixes meant for kids 14 and younger.

But I still felt alone, not only among "normal" college students but also in the celiac community. I'd never heard of any others with celiac disease going on a liquid diet. However, recent research has proven that I'm not the only one who experienced continual inflammation on a gluten-free diet.

The University of Chicago found that intestinal healing can take up to two years, particularly in those diagnosed later in life. Meanwhile, a 2009 study concluded that it is "exceptionally rare" for celiac adults to exhibit "normal" intestines, even after following a strict gluten-free diet for 16 months. Adolescents with celiac like myself aren't immune to these issues, either. One 2008 analysis of 45 children treated for celiac disease discovered an increased presence of T cells, one sign of inflammation.

This gluten free care package? Not enough...

What am I trying to say? Not that those with celiac disease shouldn't go on a gluten-free diet or that celiacs can't benefit from a gluten-free diet. Following a gluten-free diet is still the main celiac disease treatment, and that shouldn't change. However, not everyone heals at the same pace or by only using a gluten free diet.

And, for some celiacs like me, healing may not happen until doctors take extra steps to help...or until you hit rock bottom.

The Hospitalization

I was the oldest patient admitted to the children's ward in the gastroenterologist wing of my hospital. I'd just turned 18 a few weeks before, but when I stepped on the scale - clothes on, breakfast eaten - I weighed 83 pounds at 5'3". The liquid diet didn't work. Now, it was time for the last resort.

I don't remember all the details of my hospitalization, likely because of the malnutrition and vitamin deficiencies discovered by my doctor. But I remember tearing up as a feeding tube was forced up my nose and down my throat. 

I remember the night a neonatal nurse had to be called to replace the IV in my hand.

And I remember the morning rounds when doctors and trainees would gather around my bed. They said words like "celiac disease," "failure to thrive," and "uncertain causes." My doctors used a similar vocabulary. They didn't know why I wasn't healing on a gluten-free diet like normal. They didn't know when I could return to college, which I stubbornly refused to drop out of for the semester. 

I stayed in the hospital for four days. In fact, I wrote the final research paper for my politics class in that hospital bed. And then I went home, feeding tube intact. At the time, my doctors wanted the feeding tube to remain indefinitely. Yet - like I shared in one of the most popular blog posts today - I hated the thought of returning to school not only as the skinny hospitalized chick, but also as the girl with the nose tube and feeding-machine backpack.

So I didn't. The day before I went back to class, I pulled out the tube and watched as it disappeared into my bathroom trash. My doctors were giving me one shot. Could I eat - or, more precisely, could I heal - on my own? It was time to find out.

The Turning Point

Honestly, I don't know what flipped the switch for my body. But, after being hospitalized and fed who-knows-how-many nutrients each day through the feeding tube, I slowly started healing. (And by slowly...I mean months and months). I could eat (gluten-free, of course) without stomach pain. I was still thin, but I no longer looked like a skeleton. My hallmates decorated my dorm door with a "Welcome Back" sign, and, in a way, I felt like I was welcoming back the old Casey.

Besides my hospitalization, though, I took several other steps to help give my body the boost it seemed to need. I cut out dairy when I noticed how much it bothered my stomach. I eventually discovered the low fodmap diet and pinpointed several foods - like garlic, onion and mango - that turn my tummy into a time bomb. (And I slowly reintroduced other high fodmap foods, like avocado and beans, that I could and still do enjoy today). I also began exploring yoga, stretching my ability to relax and meditate as I stretched my body.

Basically? I tried to listen to my body extra closely. I avoided (even the gluten-free) foods my stomach didn't seem to tolerate at the time. I also ate to my appetite, even when my hunger was insatiable. (For over a year after my diagnosis, I remained at 88 pounds, no matter how much food I packed in. Looking back, I'm guessing all my calories were being spent on healing).

Slowly, I learned to trust what my body was telling me...and, slowly, it started doing what it was supposed to do in the first place: thrive on a gluten-free diet. 

Today

I have celiac disease; today, however, my celiac disease is officially in remission. I am thin and lose too much weight when stressed, but I am healthy. And I am so grateful for the doctors who were willing to take the extra steps that my body needed to heal. 

Love this post? Show me by tweeting! Just click here: "Why a #glutenfree diet wasn't enough to heal this #celiac. #hospitalization #liquiddiet #health via @collegeceliackc http://bit.ly/2qQ3MCB"

I'm not a doctor. I don't have the answer to why some people diagnosed with celiac disease heal immediately on a gluten-free diet while others, like me, struggle. I do know, this, however: if you have celiac disease and a gluten-free diet doesn't seem to be 100% working, you aren't alone.

You aren't the only one who needs to avoid more than just gluten in order to feel better. You're not the only one who is taking (or took) a year or more to feel "normal" after a celiac diagnosis. And you're not the only one still searching for that right mix of treatments - whether it's the right diet, the right doctor or just the right amount of time - to help you feel your best with celiac disease.

After I was hospitalized, I made forever friends. I fell in love for the first time and later survived my first heartbreak. I graduated college with a 4.0, and was accepted by a fully-funded grad school program. I am doing better than I ever thought I would be as I felt that feeding tube scratch the back of my throat.

My main hope? Someday, you'll be able to share a similar story: the story of how celiac disease might have kicked your booty a time or two, but you won. And, now, you're rockin' life while gluten free.


*Also found at Turn it Up Tuesday, Wine'd Down Wednesday, Wow Me Wednesday, RunningwithSpoons, This is How We Roll, Share Fest*

What is your celiac disease story? Did you find that going gluten free wasn't enough? Tell me in the comments below!