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Celiac Disease: Fertility’s Thief


From the Allergic Living archives. FIrst published in the magazine in 2009.

Elisabeth Hasselbeck is used to getting what she goes for. “I came of the mentality that if you work hard for something, you have a good shot of getting it,” says the 32-year-old. She was chosen as a contestant on the second season of the reality TV show “Survivor”, which aired in 2001, and made it to the final four in the Australian Outback. She auditioned for Barbara Walters’ TV show “The View” in 2003 – and got the coveted job on the women’s panel. But when it came to starting a family, diligence wasn’t doing the trick. “And … we were working hard!” Hasselbeck tells Allergic Living with a laugh on the phone from New York.

While she’d figured out that her body didn’t tolerate gluten well, she had no idea that celiac disease was playing a role in preventing her from getting pregnant. The symptoms of celiac disease come in many forms, including: stomach cramps, bloating, diarrhea, chronic fatigue and anemia. But people with untreated celiac disease can also have vitamin deficiencies, migraines, bone and joint pain, depression, weight loss and, as was the case for Hasselbeck, trouble conceiving a child.

What’s alarming is that for some people, “infertility may be the only symptom of celiac disease,” says Dr. Ralph Warren, a gastroenterologist in Toronto. Many women, however, don’t get diagnosed with celiac disease until post-menopause, while others don’t find out at all. For those whose dream is to have a family it’s an unfortunate reality since, as Dr. Peter Green of The Celiac Disease Center in New York says: “It’s a treatable, reversible cause of infertility.”

The two years the Hasselbecks spent trying to conceive after they got married in 2002 were frustrating for Elisabeth. “This was supposed to be on my timeline, I was supposed to be pregnant by now,” she recalls thinking.

Hasselbeck knew she’d had longstanding health troubles, which began in 1997. There were the intense stomach cramps, periods of lethargy and her thyroid problem. She went to doctor after doctor and was diagnosed with stress and irritable bowel syndrome. But no treatment helped. Then after 39 days in the Outback eating almost nothing on “Survivor”, her symptoms miraculously went away.

After the show, it dawned on her: something she was eating must be causing the symptoms. Eventually, she zeroed in on gluten, and concluded she had celiac disease, an autoimmune disorder in which the body reacts to gluten, the protein found in wheat, barley and rye. This leads to damage in the small intestine where the villi, small finger-like projections that absorb nutrients, are flattened. As she describes in her new book, The G Free Diet, despite eating, Hasselbeck had become malnourished.

She began eradicating gluten from her diet, the only way to treat celiac disease, and started to feel better. But the problem was, without a formal diagnosis, Hasselbeck would sometimes inadvertently eat gluten, since she hadn’t learned about all the hidden sources.

Next: Celiac Still Not on the Fertility Radar

Then Hasselbeck became a patient of Green at The Celiac Disease Center and got a formal diagnosis of celiac disease. The celiac expert made sure she was on a strict gluten-free diet. Finally, Hasselbeck was able to conceive.

It’s not known exactly why some women with celiac disease have fertility issues, but studies have shown that those affected often have delayed onset of their periods, early menopause and miscarriages. Of close to 2,000 women who took part in the Canadian Celiac Health Survey, the findings of which were published in 2007, 14.5 per cent said they had difficulty conceiving, and almost a third of the participants had had miscarriages. Celiac disease is also believed to affect men’s sperm counts.

Since some of its symptoms mimic other conditions, celiac disease often goes undiagnosed. The disease affects about one in 100 people in the United States (numbers are expected to be similar in Canada), but studies suggest a majority of North Americans with the condition are undiagnosed. This means women may not find out the disease could be causing their fertility problems until it’s too late.

“In our Canadian survey, about half of our celiac patients were diagnosed between the ages of 40 and 60,” says Warren. “Well, you’re already into menopause at that point.” Others were seniors by the time the disease was spotted.

Green has seen many patients who were having trouble conceiving get pregnant within a year on a gluten-free diet. He believes celiac disease should always be considered – before treatments such as in vitro fertilization are attempted. Yet to do so is “decidedly uncommon, since it’s not on the radar of many physicians,” he says.

If a couple is visiting a fertility clinic, they have likely already seen three or four doctors, and the clinic specialist is not looking for alternative diagnoses. Hasselbeck notes that while fertility clinics help many couples to conceive, there is no incentive to investigate this condition: “giving a diagnosis of celiac disease isn’t going to make someone at a fertility clinic rich.”

But the other side of the coin is that there isn’t a lot of research yet to support the link. In studies that have been published, results are mixed. A Finnish study found 4 per cent of women with unexplained infertility in a clinical trial had celiac disease. But another study from the University of California at San Francisco found celiac disease was not more common among women with unexplained infertility than the rest of the population.

At Mount Sinai Hospital in Toronto, Dr. Ellen Greenblatt is hoping to shed some light on the issue. She is using a questionnaire and blood antibody testing to screen patients with unexplained infertility for celiac disease. She is contrasting their results with those of a group who have a clear reason for not being able to conceive. If her research does reveal an increased prevalence of celiac disease in the unexplained infertility group, she believes routine testing for celiac disease would become the norm at clinics across Canada.

Greenblatt won’t be convinced there’s a link unless the data proves it, but says if she and her colleagues are missing a key reason for infertility, then “we’re clearly doing a disservice to our patients.”

Hasselbeck’s story has a happy ending. It was about three months after meeting Green that she became pregnant. The Hasselbecks now have three children (the youngest was due at press time), and the TV co-host is glad she gave her body time to heal before attempting more “severe” techniques for conceiving.

“I’m on the better end of the spectrum because I found out when I was just starting to have kids,” she says. “It’s so important that women know the ramifications of not being gluten-free if you have celiac disease. I really hope the percentage of people properly diagnosed goes up.”

For more celiac infertility stories, see Allergic Living‘s Fall 2009 [2] magazine.
To order that issue or to subscribe, click here [3].

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