How I learned to like a gluten-free diet


Two years ago, eating was a chore. Looking for a snack in the pantry brought me to tears. Foods I had eaten with gusto throughout my childhood now taunted and teased me from their shelves.

Miserably, I would reach past the packages of cookies, cheese crackers and pretzel rods to grab my designated snacks, housed on a separate shelf from the other food items. The unappealing packaging – gray, heavily insulated pouches labeled “GF” – indicated the “safety” of these foods.  I recall opening a bag, releasing a putrid odor similar to rotting fruit. Upon placing the sticks saturated with brown, slimy liquid in my mouth, I gagged, dropping the bag and its contents all over the kitchen floor.

At that moment, I seriously questioned why anyone thought my being diagnosed with celiac disease was “good news.”

The path to diagnosis started with my increasing lethargy.  I was having difficulty finding the energy to make it through the day. Swim practices and classes, which I previously looked forward to, became chores. My goal each day was to make it home to flop on my bed.

And then came the unexplained weight loss. No matter how much pasta my mom stuffed into me, the scale continued to decline, and I was becoming dangerously malnourished. I was dragged to the pediatrician and then to specialists. Finally, I was admitted to the hospital, but nothing out of the ordinary was detected at first. “Nothing is wrong with me!” I had snapped numerous times. My cantankerous attitude was an indicator of extreme fatigue, the doctor later told me.

After being submitted to what seemed like thousands of different tests – blood tests, thyroid tests, and biopsies – a diagnosis was determined. The doctors told me with relieved faces, “You’re lucky. It’s only celiac disease.” I had no idea what the condition was. I had never heard of it, and no one in my family or any of my friends had ever been diagnosed with it. The doctor explained, as if it were as easy as simple arithmetic, that all I had to do to ameliorate my symptoms was to avoid gluten in my diet…for the rest of my life. My parents were ecstatic- they were so glad that it wasn’t anything “serious.”

Finally home, I sat anxiously in front of the computer screen watching the black line flash on and off within the Google search engine box. With much apprehension, my fingers slowly typed, one key at a time, “What…is…gluten?”   I had never heard of it so I remained hopeful that it was not an ingredient in many of my favorite foods.  But what I found was horrifying news to me. My eyes raked across the words, not really comprehending: Gluten is a protein found in wheat and other grains. Gluten is present in cookies, cakes, cereals, muffins, pastas, breads, pizzas- the list seemed endless. My mind reeled as images of the staple foods of my life played out like a slideshow. Before I was diagnosed with celiac disease, I had never realized what a monumental role food had played in my life.

The Google search continued. “What is celiac disease?”  “How do you get it?”   “How many people have it?’  I wondered why I would be more susceptible than the next person. The results of studies vary, but approximately 2 million Americans have this genetic, autoimmune disorder with many more suffering the symptoms without a proper diagnosis.  The exact cause of celiac disease is unknown, and, curiously, it can develop at any age if the genetic makeup for it is present.

People with active celiac cannot tolerate any intake of gluten- not just in the form of food.  It could be in a toothpaste, medication, lip gloss or even on the glue of an envelope.  Even the smallest trace amount can affect the healthy villi, which line the small intestine by flattening them.  Therefore, the villi are unable to do their crucial job- absorb nutrients from food.

The resulting effects are varied and very dangerous – from cramps, fatigue, bruising, depression, hair loss, delayed growth, defects in tooth enamel to itchy skin and many more.  Diagnosis is difficult.  The most accurate test is a blood test which can detect several special antibodies, called antitissue transglutaminase antibodies (tTGA).  I had been told that my test revealed elevated tTGA levels, and a biopsy of a small piece of tissue from my small intestine confirmed the condition.  A side by side comparison of pictures demonstrated the clear difference between my villi and those from a healthy small intestine.  Mine were completely flattened while the healthy villi resembled the bristles of a hairbrush, standing alert and lined up in rows and columns.

Acceptance was slowly creeping into my brain, and I then continued my quest for information about celiac.  This time I typed furiously, “How is celiac treated?” and “Will I ever be cured?”

Site after site confirmed that my celiac will never be cured.  Instead, I can manage it by living gluten-free, avoiding anything with wheat, barley, rye, and some oats.  The challenge seemed overwhelming.  My family treated me to my favorite meal, a last supper of sorts, at my favorite pasta restaurant.  And then they all jumped into support mode, and the dietary change began.

Gone were those days where I could mindlessly inhale delicious food. Now, every bite had to be thoroughly researched, inspected, and double-checked before it travelled to my mouth – and most of the time, I found the gluten-free food unpalatable. The pasta was mushy, the crackers tasteless, and the breads so crumbly they would survive the transfer to a Ziploc bag in my lunchbox.  There were a lot of expensive gluten-free purchases that ended up in the trash after one bite.

Motivated mostly by fear of not getting better, I began a very limited diet of fresh fruits, vegetables, plain meats, baked potatoes without toppings and white rice.  We purchased all new pots, pans, plates, glasses and utensils for my use, and designated kitchen space “GF” as well.  As the rest of my family continued to eat normally, cross-contamination was a big concern. Travel swim meets, after school clubs with snacks, and dinner celebrations with friends were no longer easy and relaxing.  I would feign I wasn’t hungry so others wouldn’t know I couldn’t eat “regular” foods.

At this time, one of the lowest points in my life, an unexpected opportunity arose. While doing some community service at a food bank, I dropped my uneaten GF packet into one of the boxes I’d prepared.

The next time I was volunteering, a delighted man and woman approached me.  They had a young daughter who was intolerant of gluten, and it was my GF packet that had made its way to their home. Usually unable to afford the expensive food substitute, they were grateful for my donation.

That visit changed my entire perspective about my disease. I realized I was lucky to have parents who could afford to provide food for me that would not make me sick. I realized all I had to do to feel better and live with this disease was to change my attitude. I started to research what foods I could eat rather than what I couldn’t.

Now when I open the pantry door, I am excited by my options. I have combed area supermarkets and found foods I cannot tell apart from the non-gluten-free food I used to eat. I have helped my grandpa to alter his recipes so he can make my favorites- dumplings, sausages, and spetzli noodles without gluten. I can now devour his scrumptious meals like I did when I was younger. I am campaigning for restaurants to adopt gluten-free menus, which are safe for celiacs to eat. I have joined celiac support groups so I can gain tips from experts about living this challenging life and also comfort the newly diagnosed who are feeling as vexed and hopeless as I did when I was in their position.

Of course, our family regularly donates only GF items to any food drive, and I can proudly say I am now flourishing without gluten in my life.

(This article originally appeared in the February 28, 2013 print edition.)