From frustration to foundation: Embracing a diagnosis of celiac disease

We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases will share their unique stories; the latest comes from celiac-disease patient and expert Alice Bast.

The day I was diagnosed with celiac disease was the best day of my life.

People always react with surprise when I tell them that. They ask how I can consider being diagnosed with an autoimmune digestive disease such a positive milestone. And I tell them it’s because that’s the day I got my life back.

In hindsight, I believe a vacation to Mexico played a role in triggering the disease. You see, celiac is a genetic condition, so you have to have a genetic susceptibility in order to develop the disease. But there’s something else needed to trigger the onset: an environmental factor, usually some type of emotional or physical stress. There’s little known about it, but in my case, I believe a parasite that I caught on vacation was my trigger. I was treated, but after that, things were never the same.

My husband and I were starting a family, and my oldest daughter was born perfectly healthy after a normal pregnancy. My second pregnancy, though, was nothing like the first. Early on, severe fatigue set in. I was constantly weak and rarely got enough sleep, as severe diarrhea, joint pain and migraines kept me awake at night. No matter what I did, I lost weight. Two weeks before my due date, I lost my baby.

Over the years, I went on to have multiple miscarriages before finally delivering my youngest daughter, who weighed only 2 pounds. For eight years, I visited an incredible amount of doctors - 22, to be exact. No one knew what was wrong with me. At 5’9″, I had wilted to a mere 105 pounds. I thought I was dying. My mother died of pancreatic cancer, and I thought I had cancer too, somewhere - but where? When and how would I find it, and would it be caught in time?

It wasn’t until talking to a family friend, a veterinarian, that I realized that what I was eating could be the problem. She mentioned celiac disease and said that animals can have reactions to wheat. Still on my quest for answers, I visited my 23rd doctor. “Here’s my arm,” I remember saying. ”Give me the blood test.”

Sure enough, the results came back positive for celiac disease. Finally. After eight years of struggling, I had my answer. There’s no cure for celiac, but I was told that by adopting a gluten-free diet and ridding myself of anything derived from wheat, barley, or rye, my health would return and I could live a normal life. And it did. And I did.

But my story doesn’t end with my diagnosis. That’s where it starts.

I enthusiastically accepted my diagnosis and took on the difficult task of eating gluten-free. No more pizza, pasta, bread, soy sauce, cakes… the list goes on. But I was willing to make the switch to reclaim my health. What bothered me the most about my diagnosis was the thought that other people who, like me, don’t represent the “typical” celiac patient (I wasn’t short, I wasn’t a child, I looked fine), were out there suffering and no knowing why. I had lost my babies, and I was determined to prevent the same thing from happening to other women.

The doctor who diagnosed me retired from his practice, so I switched to a new gastroenterologist, Dr. Anthony DiMarino. Together, Dr. DiMarino and I dug into European research studies and became convinced that the untreated celiac had caused my fertility issues. My commitment to spreading celiac awareness grew stronger. I had to get the word out to people in every way I could. And, so, in 2003 the National Foundation for Celiac Awareness (NFCA) was born.

Years later, I’m still as determined as ever to tell everyone about celiac disease. I’ll stop people in the grocery store to talk to them about the gluten-free food in their shopping carts. I’ve traveled all over the country to host events and speak to doctors to tell them about the realities of celiac disease and that it might not appear as they imagine. With an estimated three million Americans living with celiac and 85 percent of them remaining undiagnosed, it’s my duty to tell people about it.

I don’t want other women to experience the heartbreak that comes with losing a baby due to undiagnosed celiac disease. And I don’t want people to spend years questioning why they’re suffering from depression, digestive issues, infertility, migraines, fatigue or even anxiety. There’s an answer, and that answer could be celiac disease.

Photo by vaRiax_

Alice Bast is widely considered to be an expert on celiac disease and the gluten-free lifestyle. She is the founder and president of the National Foundation for Celiac Awareness, a nonprofit organization dedicated to driving diagnoses of celiac disease and other gluten-related disorders and improving the quality of life for those on a lifelong gluten-free diet.