Alice Bast’s first pregnancy was easy. She had no complications and delivered a healthy 8-pound baby.
Her second pregnancy, however, was not so easy. Fatigue set in early. She developed frequent migraine headaches. Achy joints and severe diarrhea kept her up at night. And despite everything she tried, she was inexplicably losing weight.
Two weeks before her due date, she stopped feeling her baby kick. She knew something wasn’t right. Sadly, her baby was stillborn.
In spite of their distress, Alice and her husband were determined to continue their efforts to have another child. Over the next three years, three pregnancies would end in miscarriages. The 22 physicians who examined her – from family doctors and ob-gyns to neurologists and gastroenterologists – couldn’t figure out what was causing her fertility issues.
Alice was cautiously optimistic six months into an uncomplicated pregnancy. Then the symptoms began again. A few weeks later, doctors performed an emergency C-section to deliver her second child: a 2-pound baby girl.
Finally, a diagnosis
When her family veterinarian mentioned that her symptoms could be related to the foods she was eating, Alice sought out another gastroenterologist (the 23rd physician) who performed a blood test. The results came back positive for celiac disease – an autoimmune disorder that damages the lining of the small intestine preventing it from absorbing important nutrients.
“At the time, celiac disease was considered a rare childhood disease. But I was 5′ 9″ tall and 32 years old. I had unusual symptoms that didn’t add up,” she explains. “I said to the GI doctor, ‘Here’s my arm. Take the blood test.’ Sure enough, I had celiac.”
As a kid, Alice didn’t have any symptoms of celiac disease. She had traveled to Mexico one year and caught a parasite. It wasn’t until after she was treated for the parasite that she began to experience symptoms.
“I think that environmental factors trigged my symptoms. I had a lot of tingling in my hands and feet. I couldn’t keep food down,” she recalls.
Linking infertility with celiac
In the back of Alice’s mind, though, she still wondered if there was a connection between her fertility problems and celiac. She sought out a leading expert on the condition. That’s how the Fort Washington, Pa., resident met Jefferson gastroenterologist Anthony DiMarino, Jr., MD, chair of the Department of Gastroenterology and Hepatology and director of the Jefferson Celiac Center.
“I began researching studies out of Europe and learned that undiagnosed and untreated celiac can lead to a host of other autoimmune diseases and cause problems with fertility, repeated spontaneous abortions and intrauterine growth retardation,” she says. “Dr. DiMarino was very supportive.”
The physician looked more closely at the potential link between celiac disease and fertility problems and found patterns as well.
“Unfortunately, we don’t know the exact cause of fertility issues in women with celiac disease,” says Dr. DiMarino. “A possible contributing factor to miscarriages may be celiac antibodies circulating from the mother and damaging the placenta. Nutritional factors which may affect the mother, may also be a contributing factor.”
For some women, unexplained infertility can be the only sign of undiagnosed celiac disease. Studies indicate that celiac disease may occur in 1 to 8 percent of women with unexplained infertility, with the most recent research estimating it to be more than 5 percent.
But upon receiving a diagnosis and maintaining a gluten-free diet, Dr. DiMarino has found many of his patients with fertility problems have been able to successfully conceive and deliver a baby.
He recalls when a few years ago, a young woman came to the Celiac Center with anemia.
“She had been trying to conceive for three years,” he says. “We diagnosed her with celiac disease and within six months of being on the gluten-free diet, she got pregnant. She now has two children!”
Alice wanted to run a nonprofit for celiac patients nationwide, and Dr. DiMarino accepted her invitation to be the advisor.
In 2003, she started the National Foundation for Celiac Awareness (NFCA). Alice quickly became a strong patient advocate for celiac disease awareness. In fact, the National Institutes of Health funded a grant to help the NFCA increase awareness of the condition in the medical community.
Alice, Dr. DiMarino and other members of NFCA’s Scientific/Medical Advisory Council created a celiac disease symptoms checklist and fact sheets to better inform physicians, dieticians and other healthcare professionals.
“The NFCA also needed a top center in Philadelphia to refer patients to. It’s really critical to have a center with coordinated care where patients can go to get an early diagnosis, be educated and have access to nutritionists,” Alice explains. “That’s why I recommended Jefferson University Hospitals.”
Alice believes that through the NFCA, she has been able to empower patients to take control over their health. She stresses the critical importance of early diagnosis.
“We try to give people the proper tools and resources. If you have celiac disease, you can have a healthy outcome and a healthy pregnancy.”
On Sunday, September 23, the NFCA is hosting “Appetite for Awareness” at the Historic Strawbridges Building. Jefferson is the lead sponsor of the event, which will feature a gluten-free cooking spree, chef demos, gluten-free foods and drink and more.
To schedule an appointment at the Jefferson Celiac Center, please call 1-800-JEFF-NOW.