FeaturesFeb/Mar 2013 Issue

Why Can’t We Have a Baby?

Raising Awareness

Several more studies on celiac disease and infertility are underway. At Thomas Jefferson University Hospital, Anthony J. DiMarino, MD, is overseeing a large study on the reproductive health of women with celiac disease. (The research is ongoing but data was presented at the American College of Gastroenterology’s annual meeting this past fall.) At the Celiac Center at Beth Israel Deaconess Medical Center, researchers are collaborating with the fertility clinic, Boston IVF, on what will be the largest study to date on screening for celiac disease in women with unexplained infertility. The team hopes to have preliminary data in the next year.

“Even if celiac screening doesn’t make it into any guidelines in the near future, we’re working to raise awareness in the fertility world, talking to fertility groups and publishing review articles,” Leffler says.

“So much heartache could be avoided by raising awareness,” says Alice Bast, founder of the National Foundation for Celiac Awareness (NFCA). Before being diagnosed with celiac disease, Bast gave birth to a full-term stillbirth daughter, Emily, and later, she delivered a two-pound preemie. (Her preemie is now a sophomore at the University of Michigan.)

“If someone had run a simple blood test, perhaps I wouldn’t have gone through all the pain and suffering I endured,” Bast says.

She realized she wasn’t the only woman to experience reproductive health problems due to undiagnosed celiac when she ran a celiac support group in the 1990s. The group took a poll of their members and found a startlingly high rate of miscarriage, infertility and preterm babies.

“It burned a hole in my heart,” says Bast, who soon thereafter applied for a National Institutes of Health grant and started the NFCA.

In 2010, the NFCA—which works to raise awareness about all the signs and symptoms of celiac disease—joined forces with the Celiac Center at Beth Israel Deaconess Medical Center and developed a women’s health and celiac disease guide.

“Changing medical practice doesn’t happen overnight,” says Bast. “But by getting the women’s health guide out to the community, we hope women might ask their doctors to be tested for celiac disease today.” (The guide and a celiac symptom checklist are available for free on NFCA’s website, celiaccentral.org.)

Recently, Bast took her awareness campaign to the head physician at the American Congress of Obstetricians and Gynecologists. When she wasn’t able to arrange a meeting, she made an appointment instead—as a patient.

“I was in the exam room without clothes on in order to talk about celiac disease. I told the physician my story and handed her a stack of publications on infertility and reproductive health issues. I asked her, how do we get this on your radar? How can we have celiac disease talked about in reproductive health rotations in medical school?”

“We won’t stop pushing,” says Bast. “I’ve seen the tears of too many women who’ve suffered.”

One woman’s story in particular haunts her:

“I’m 64 years old,” she told Bast. “My entire life I was trying to have kids. Two years ago, I was diagnosed with celiac disease. Maybe a change in diet was all I needed.”

Medical writer Christine Boyd lives in Baltimore, Maryland.

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