By Alice Bast, as told to Stephanie Watson
If there’s one thing I would tell someone who is experiencing symptoms of unknown origin, it would be this: Don’t give up until you have answers. It took me 8 years, three miscarriages, a stillborn baby, and 23 doctors to find out what was making me so sick. Getting a diagnosis not only saved my life (literally), but also led to me to help other people in similar situations.
My story starts in 1987. I was on a business trip to Mexico when I caught a parasitic disease called giardia. My doctor treated me and rid me of the parasite, but from that point forward I was never the same.
It started with GI symptoms. I had terrible diarrhea, bloating, and gas. My once thick hair fell out. I had migraine headaches. The doctors I saw treated each symptom that popped up, but they couldn't find anything wrong with me.
One Loss After Another
My husband and I already had one child, and my doctors told me I was healthy enough to get pregnant again. Two weeks before my due date, I didn't feel right. My baby wasn't moving enough. My doctor told me she was just big, and that I was fine.
Then one day the movements stopped. We rushed to the hospital, but we were too late. My baby had died. We didn't realize at the time that she had intrauterine growth restriction, a condition that kept her from growing normally. I was so malnourished that my baby wasn't getting any nutrition.
Still, all of my lab tests were normal. My doctors gave me the green light to get pregnant again. I had three miscarriages in a row. Though my tests checked out, I felt far from healthy. I was losing weight and I had strange tingling sensations in my hands and feet.
I ended up getting pregnant again. In the middle of my pregnancy, my doctor told me that my baby wasn't growing properly. They put me on complete bed rest. For 2 1/2 months, I had to lie as still as possible. I couldn't even move my arms and legs.
Even with this extreme precaution, I could feel my baby's movements slowing down. An exam revealed that my baby was in distress. I needed an immediate C-section.
My baby weighed just 2 pounds when she was born. She fit into the palm of my hand.
Sicker and Sicker
My little girl was tiny, but she was a fighter. She grew stronger and stronger. Meanwhile, I became sicker and sicker.
My teeth were breaking. Everything I ate ran straight through me. I'm 5'9" and I weighed just 103 pounds. My doctor put me on a high-carbohydrate diet to put some weight back on me. That meant I was eating an all-gluten diet.
I feared that I had cancer. My mother had died young from pancreatic cancer, and I thought I might be destined for the same fate.
The Veterinarian Will See You
I'd been to 23 doctors over an 8-year period, including endocrinologists and GI doctors at some of the top hospitals in the country. None of them could figure out what was wrong with me. Then I took my dog to the veterinarian.
The vet took one look at me and said, "Wow! How much weight have you lost?" When I told her, she asked whether my doctor had tested me for a disease that's related to gluten. I said no. She told me it was called celiac disease.
I went back to my gastroenterologist, but he refused to test me. He told me celiac was a childhood disease. There was no way I could have it.
When I insisted on a test and my result was positive, my doctor was astounded. He said he'd never had an adult patient with celiac disease (this was long before doctors knew celiac wasn't just a childhood disease).
Life on Hold
My doctor proceeded to tell me all the things I'd be unable to do because of celiac disease: Hold a job. Eat in a restaurant. Live a normal life.
My head was spinning. I'd have to cut gluten from my diet. Like most people back then, I didn’t even know what gluten was. The doctor said it was in everything.
All I could think was that I wasn't dying of cancer. I could do this.
But I quickly realized that living with celiac disease wasn't going to be easy. From the moment I woke up until the moment I went to bed, I'd have to worry about every bit of food I put in my mouth.
This was in the early 1990s. There were no properly labeled gluten-free foods in supermarkets or restaurants. People with celiac disease either had to buy them at pricey specialty food or health food stores, or order them in bulk from suppliers.
About 1% of the population has celiac disease, but at the time, only 3% were diagnosed. I quickly realized that a lot of work needed to be done.
Answering the Important Questions
Every discovery I made led to another layer of research. I was trying to answer the burning question, "Why is my body doing this?"
After surveying my support group, I discovered that celiac disease isn't only about digestive issues. It involves a variety of symptoms, like headaches, brain fog, and reproductive problems like my own.
I went to night school at the University of Pennsylvania and got a degree in nonprofit business administration. I sent myself to an international medical conference on celiac disease. And I continued to research my condition.
In 2003, 9 years after my diagnosis, I founded the nonprofit organization Beyond Celiac. As its CEO, my first task was to tackle the problem of access to gluten-free foods.
We distributed brochures to doctor's offices around the country and held cooking competitions around the country that paired doctors with chefs. I knocked on the door of major supermarket chains, like Wegman's and Walmart, and asked them to put more gluten-free foods on their shelves.
Once Anheuser-Busch jumped in and announced that it was releasing the first gluten-free beer in 2006, the floodgates opened. A lot of celebrities jumped on board and the message spread. That's why today, you can find gluten-free foods in just about every supermarket and in many restaurants across the country.
Beyond Celiac has also been active in the research arena. We've funded studies on the connection between the gut and brain in people with celiac disease and to answer the question, “Why does the body go from gluten tolerance to intolerance?” We've also launched an app called Go Beyond Celiac to collect data from people with this disease.
I'm proud to have helped increase the availability and affordability of gluten-free foods. Awareness is up. Scientists report that up to half of people with celiac disease are diagnosed now, in part due to our efforts.
But it's still hard to live life to the fullest with this disease. A gluten-free diet isn't enough. We need treatments or a vaccine if we're truly going to eat without fear.
It's important for us to keep pushing forward. We've come so far, but we need even more research. I'm optimistic that one day, there will be a treatment for celiac disease. And I won't stop fighting until that happens.
Alice Bast is the founder and CEO of Beyond Celiac , a nonprofit organization that works to improve diagnosis, further research, and accelerate the discovery of new treatments for celiac disease.