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Sarah's Story

 
6/3/2011

I had shown symptoms of what I know can safely link to celiac disease since I was about 9 years old: joint pain, muscle pain, nervous system issues and depression. When I was 9, doctors blamed it on growing pains. Then my flat feet. Then high school sports.

When I was about 15, when every diagnostic test for specific autoimmune/other diseases came back negative (lyme, lupus, RA, etc.), they thought I was making it up, seeking attention of doctors, my family, etc.

By the time I got to college, I was losing feeling in limbs, experiencing neuropathies, had changes in my vision, and was losing my balance just walking around flat ground. I avoided stairs like the plague, had given up sports, and struggled to find my place as a teenager/young adult amid pain management techniques and treatments. I wore joint braces on almost every joint of my body, slept on special mattresses and pillows, and needed medication to sleep (this lasted for about 7 years, nightly). I reorganized my dreams about my future to accommodate for the expectation of a worsening condition and an increasingly physically disabled existence.

When I left college and found myself in Chicago, I sought help independently as symptoms worsened and I became less and less confident in my ability to build a future. I was in physical therapy/pain management doctors’ offices twice a week to maintain the limited function I had. When there was no marked improvement in symptom management, I was referred to neurologists and MS specialists, and the prognoses were contradictory; I either had nothing wrong with me, or was given a prognosis of Primary Progressive MS. I had no brain lesions, but in between my three MRIs a year, my symptoms were rapidly developing.

In 2006, I lost feeling (but not function) in half my face. The symptoms did not subside, only progress. Some days were better than others, but they never went away. I was in my mid-twenties and had seen 15 doctors in about 13 years.

At 23 years old, I accepted my MS prognosis and, again, rearranged my life with the expectation of rapid physical deterioration. I struggled with an extremely limited diet of all natural, whole foods as a 20-something who wanted to be able to party a bit and indulge with her first paychecks. Dating and relationships were out of the question; between doctor appointments, lack of optimism about the future, braces, and pain/numbness, emotional and physical intimacy were a joke to me. I left a wonderful job to take a dream job opportunity because I was scared if I didn't do it when I was 23, I would never get to work in the field I loved. I didn't know how much longer I could work and be independent, but every day I came to work I felt good about my life and what I thought would be my primary contribution to the world.

At that job, I put on a variety of programs for the public, and some were advertised through the City of Chicago's programmatic marketing. To make sure they got my information correct, I went on their marketing website, and saw that the day after my program was a "Free Annual Celiac Disease Screening" at University of Chicago (where my office was). I thought I would sign up because I had a relatively rare form of MS, and perhaps they could use a sample from an autoimmune girl like me for their research. I went, did the blood draw for the screening, wrote a $10 check in honor of my friend from college who was diagnosed after we parted ways, ate a cookie, and left.

Three weeks later I got a phone call.

My test results were slightly positive - so slight that they almost didn't call me, but with my symptoms (they asked me to fill out a checklist on a clipboard - I checked almost every one), the doctor thought the risk associated with an endoscopy was low compared to missing the diagnosis. So why not make sure?

I was shocked, but also suddenly extremely hopeful, and extremely scared. Shocked because celiac is a GI disorder- I NEVER had any GI symptoms. Sure, my stomach would get upset when I had too much dairy, or sugar, but nothing like what I read about. I had MS, right? I was going to live an abbreviated, limited life, right? I had planned my life around the expectation it wasn't going to be everything I wanted it to be because of progressive symptom development. Suppose all that was wrong? And lastly, suppose this turned out NOT to be celiac? I would go back to the gray land of no-formal-diagnosis, waiting for lesions to appear on my two or three MRIs a year, unable to get MS drugs because of lack of lesions, and unable to treat symptoms because we didn't know the cause.

I remember crying before they rolled me into surgery; I just need to know what this is. Where I belong. Who I am.

I woke up from the endoscopy and a nurse came in, noticing that I had blood drawn. She said I should probably eat something since I fasted and then they drew blood. She handed me juice and a little box of individually wrapped cookies. I remember shoving a shortbread in my mouth - delicious. Then I unwrapped the Oreos, and the doctor came in. She gasped and looked at me like I had grown a second head.

"Who gave you those?!" she exclaimed.

"Your nurse!" I replied, and shoved a whole Oreo in my mouth at once.

She leaned over, grabbed the cookies out of my hand and said "Well, that's the last one of those you're ever going to have."

I burst into tears. Drugged up dopey tears with a mouth full of Oreo. The doctor looked at me and immediately began reassuring me "No, it’s ok, you'll get better and there's a lot of great cookies and gluten-free food you can eat, and we'll give you a list of delicious things. You'll be fine..." she rambled.

"No," I replied. "I'm so happy. It's finally over."

My biopsies had shown extensive intestinal damage and villi flattening. I went back to pick up my results a few days later, but didn't see the satisfying closure I was looking for on the forms. Who knew they don't print your future in big red bold letters? I wish they did. I had the admin at the front desk call back to the nurse and talk to me on the phone. I asked where the diagnosis was written. She told me at the bottom of some page in the packet... but don't worry. "You have celiac disease. You need to eat a gluten-free diet for the rest of your life." I thanked her and handed the phone back to the admin, and stood in silence at her desk. She asked me if I was alright. I was so alright.

Had I not gone to that free screening, and had my test results not been evaluated by someone who works with celiac who knows the varied and complicated symptoms in which it can manifest, I never would have been diagnosed. I never would have been able to be fully independent, buy my home, work full-time, have healthy relationships how I wanted to have them, or plan for my future like I am today. Screening for this disease is extremely important, particularly for those of us who don't represent the old "classic" symptoms.

I can't imagine my life now without this diagnosis, and I treasure that I get to make decisions about my life and the food I eat that enable me to live well, happily and healthily. Six weeks after my diagnosis, I walked up stairs without pain for the first time since I was 9 years old. I was 24, but really, it was like I had just been given a new life.

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