FeaturesFeb/Mar 2013 Issue

Why Can’t We Have a Baby? Celiac Disease and Conception

Counting the Costs

By the time Marisa Horowitz-Jaffe was diagnosed with celiac disease, she and Doug had already found egg and sperm donors as well as a surrogate, Courtney, to carry the pregnancy. Marisa called Courtney immediately to ask if she could wait six months: Marisa wanted to go gluten free and then have Courtney try to carry Marisa and Doug’s biological child. After her multiple miscarriages, Marisa didn’t want to even attempt to carry another pregnancy herself.

“I was new to being gluten free and terrified that if I slipped up, I’d end up with another dead baby. I couldn’t handle that kind of pressure,” she says.

Six months later, in May 2010, Marisa and Doug traveled to Dallas, Texas—laws prohibit surrogacy in New York State—and began their eleventh round of IVF.

“The way I responded to the medications, it was like I had a totally different body. Everyone was in awe,” she says.

Two embryos were transferred and their surrogate, Courtney, became pregnant on the first try. Marisa and Doug’s twins were born on December 27, 2010, almost a year to the day of Marisa’s celiac diagnosis. The babies were early but healthy.

Along with the challenges and joys of parenting, Marisa faced reminders of her long ordeal. Infertility had taken a serious toll on her.

“I still have what I consider some form of post-traumatic stress from it,” she says. “Every month when I get my period, I’m hit with feelings of overwhelming sadness and anger.”

In the midst of her fertility struggles, it was deeply painful for Marisa whenever someone close to her announced a pregnancy. She could barely speak to her sister for the better part of a year after her sister became pregnant. Marisa broke off ties with her oldest and dearest friend when she became pregnant with her second baby.

“It was impossible for me to put on a brave face,” Marisa says.

With what seemed like babies being conceived all around her, Marisa retreated to her basement. She became socially isolated and deeply depressed. When she and Doug lost their son at 20 weeks, three years into their infertility journey, Marisa hit rock bottom.

“Nothing mattered to me at that point—not the career I had worked so hard for, my health or my appearance. Even brushing my hair was tough to do some days,” she recalls.

There were times when Marisa was afraid her marriage might also fall apart, yet the couple ultimately grew closer, weathering even the financial stresses of infertility.

“IVF conservatively costs between $12,000 to $15,000 a cycle,” says Corey Whelan, program director at the American Fertility Association, an educational resource on family building. “Although diagnostic tests that point to causes of infertility like hormonal testing are usually covered by insurance, payment for fertility treatments varies by state and insurance plan.”

Marisa and Doug’s insurance covered two rounds of IVF. They were on their own for the rest, which, in addition to IVF, included some “unorthodox” testing, like screening for rare immune disorders and highly specialized sperm analyses.

“We were shooting for anything, praying a test would actually come back positive so we would know what to do finally,” says Marisa. “In the end, it came down to a fairly cheap test that was actually covered by our insurance.”

“A celiac panel is relatively inexpensive, on par with a cholesterol screen,” says Leffler. “From that perspective, you could argue it’s worthwhile to include celiac in a fertility workup. But the flip side is that even in those women who may have celiac disease, you can’t be sure the gluten-free diet will correct the problem. If you have them wait a year to conceive, you could waste precious time. You’ll probably have to run other tests or try IVF anyway.”

Since treating Marisa, Drew Tortoriello, MD, a reproductive endocrinologist and medical director at the Sher Institute for Reproductive Medicine in New York, now tests for celiac disease in women with unexplained infertility. He suspects he’s in the minority.

“I think most doctors consider it unnecessary without overt celiac symptoms,” he says.

Yet without screening guidelines in place—there’s currently no national guideline to test for celiac disease in women with unexplained infertility—it’s hard to blame doctors. Tortoriello thinks guideline-setting organizations like the American Society for Reproductive Medicine may soon take a harder look at the issue.

“We’re only now getting to a point where we have enough studies of high enough quality to make people feel comfortable that there’s a real link and real problem,” he says.

Next: Raising Awareness

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