Phil Zimbardo wants to talk about sex. More precisely, he wants to talk about the utter misery of losing interest in it. As a life-long lover of women, he was at a loss when it happened to him, a Dr. Phil, a psychologist more used to seminars on mental health than dealing with his own, a prolific author and speaker – a guest, even, on the TV talk show hosted by that other Dr. Phil.
In his early 70s, Zimbardo was hit by a perfect storm of symptoms that included extreme fatigue, a bloated belly, constipation and the constant, embarrassing need to pass gas. Zimbardo knew it wasn’t just age-related, and his doctors were mystified. Maybe it was irritable bowel syndrome, they suggested, or excessive gas syndrome, which seemed little more than a catch-all term for a condition they couldn’t fix, no matter how many colonic treatments and anti-flatulence medications he was prescribed.
As his body betrayed him, Zimbardo grew depressed to the point that he lost interest in all things sensual and sexual. This was astounding since he’d always adored women: gorgeous, plain, curvy and not. Sex with his wife of nearly 40 years had become something he did out of duty; he “serviced her,” pretending to enjoy it because he was not able to be a full and willing participant. At the same time, he was aware that he was a faker, a guy who was crumbling on the inside as everything he had taken for granted about himself – his wit, his sexuality and his very masculinity – was erased. It was sheer torment.
Then a friend suggested that Zimbardo might have what she’d just been diagnosed with: celiac disease , an autoimmune condition that affects an estimated one in 100 people in North America. He had a vague idea of what it was – the body’s virulent reaction to gluten, a protein in wheat, rye, barley and many oat products, which damages the villi, the small, finger-like projections in the wall of the small intestine that help nutrients pass into the body. In turn, this compromises or prevents the absorption of important nutrients such as vitamins, phosphates and minerals.
“What do I have to lose?” he asked himself. Zimbardo made an appointment with a gastroenterologist, got his blood tested for the antibodies associated with celiac disease and then later had an intestinal biopsy to confirm the diagnosis. All of a sudden, he had a reason for his constipation, tiredness, gas, depression and the resulting sexual dysfunction, and a way to turn things around: eliminate gluten from his diet.
“No one talks about the sex part in celiac disease,” says Zimbardo, a prominent psychologist and professor emeritus at Stanford University in California. “No one tells you that your sex drive can shut down and your very manhood can be challenged. As a psychologist, I’m always analyzing behavior and I just couldn’t understand what has happening to me until I was diagnosed.”
He has a point. People often find it hard to talk about sex, period, never mind how it relates to celiac disease. Think of it: symptoms that have been linked to the disease run the gamut from diarrhea and stomach cramping to osteoporosis, weight loss and weakened tooth enamel . But it’s as if any discussion of the S-word has been shoved behind closed doors, to be whispered about, if at all.
With the digestive distress before a gluten-free diet is adopted, “you’re probably not going to feel really sexy, and you wonder if you’ll ever get your sexy back,” says Alice Bast, founder and president of the National Foundation for Celiac Awareness (NFCA). “Even after people are diagnosed, they don’t ask their doctors about something as simple as kissing,” she says. “But it’s a real concern. What do you do if the person you are about to kiss has just eaten gluten?”
Last year, Bast asked that question of a panel of specialists at the International Celiac Symposium in Oslo, Norway. “They were, like, ‘what?’”she recalls. “I said: ‘kissing’. They didn’t know what to say because they’d never dealt with this before. But people do ask me. They ask me all sorts of things they won’t ask their doctors.”
A 5 foot, 9-inch dynamo who weighed a mere 100 pounds when she was diagnosed 18 years ago, Bast started the NFCA to educate people and provide a forum for people with celiac disease. She says people ask her many questions when it comes to celiac disease and their sex lives. Like whether semen can contain gluten, and if the sex drive is affected by vitamin, hormone imbalances and plain old gas. (The answers: probably not and absolutely.)
Mindful of the panel’s confused response to what she considered a simple question, Bast and her NFCA colleagues put together a short video called “Sex and the Celiac .” It’s about how sneaky, undiagnosed celiac disease could be “fixing your funk” or “making your mojo a no-go.” With more than 10,000 online views to date, it’s a bona fide hit. And it has commonsense advice for people who suspect they have the disease: make an appointment with a physician pronto. “When in doubt check it out,” Bast says in the video. “If your libido is lacking, take the celiac symptom checklist and get your sexual side back in the game.”
Amid all the research into celiac disease, from its provenance to possible treatments, at the time of writing this article, Allergic Living was able to find only one small study that has focused on the level of sexual satisfaction among people with the condition. Published in 1998, it was done in Italy, the land of love and pasta, and it revolved around 55 patients with celiac disease: 24 men and 31 women between the ages of 18 and 65.
“Sometimes, I heard women complaining about troubles in their sex lives and sometimes, they would speak of how sex had gotten better after changing to a gluten-free diet,” says lead author Carolina Ciacci, a gastroenterologist and professor of medicine at the University of Naples Federico II. “It was clear that a study was merited.”
Next: How to get your groove back
Before they embarked on gluten-free diets, the participants filled out anonymous questionnaires that asked things such as how often they had intercourse, if they experienced any pain during sex and if they had problems reaching orgasm. After 12 months of living gluten-free, they filled the questionnaire out again. To better interpret the data, their answers were compared to those of 51 people without the disease.
The results were clear. People with untreated celiac disease had “significantly” less intercourse than those in the control group, and fewer of them were satisfied with their sex lives. And after 12 months of treatment, their sex lives had improved in every way – a lot. While Ciacci has no plans to do a further study, a few experts such as Dr. Peter Green, the founder of the Celiac Disease Center at Columbia University, are aware of the issues around a healthy sex life with celiac disease. He isn’t shy about asking his patients how often they’re having sex, especially when issues of fertility  are involved.
Sheila Crowe, a gastroenterologist and medical professor at the University of California, San Diego, acknowledges there is too little data about sex lives and celiac disease, and that gastroenterologists are not trained to think about sex when they are checking out symptoms such as constipation or diarrhea. “We’ll ask about genital health and urinary function, about menstrual cycles and cramps and infertility – but sexuality? It’s not on my radar screen,” she says. “Maybe it should be. Maybe the average gastroenterologist should be asking about sexuality as a matter of course.”
At the same time, she cautions that talking about sex drive means having to overcome social mores and fears, and to delve into an issue that may be caused by a myriad of physical and psychological factors, including depression. With undiagnosed celiac disease, notes Crowe: “People are fatigued. They lack energy, they may be underweight, which affects endocrine function, and they may be suffer depression due to it all. Women may stop have having their periods. Any chronic illness can impact our sexuality. We all need to be aware that it’s not as simple as: ‘Not tonight, dear, I have a headache.’”
Green and Crowe stress that specialists should be more sensitive to these issues. Recently, for example, a woman in her 30s was referred to Crowe for an opinion on her celiac symptoms . The woman asked point blank if she could have sex with her husband after he had eaten food containing gluten. “It was the first time I had ever been asked,” Crowe says with a laugh. “I told her that what her husband eats isn’t going to cause problems since gluten has to be ingested into your body.”
When it comes to kissing, Crowe says there isn’t scientific evidence that enough gluten would be left in the mouth to cause a problem for the partner with celiac disease. But Bast of the NFCA counsels caution all the same. No matter how unromantic it seems, she recommends being as careful about kissing and having your partner brush and rinse. It’s better to be safe than sorry.
While Bast doesn’t like to dwell on how she felt before being diagnosed with celiac disease, she acknowledges that sex was the last thing on her mind. “I thought that I had cancer and was dying. Everywhere we went, my life revolved around eating a minimal amount of food and trying to stay out of the bathroom,” she says.
Even after she was diagnosed, change didn’t happen quickly because she was so malnourished and had been through so much, including multiple miscarriages and a stillbirth. In fact, when it came to sex, the change was so imperceptible, she didn’t even realize that after years of avoiding intimacy, she had begun to enjoy it again. It was a subconscious thing more than anything, something that somehow seemed normal again, from the act of putting her arms around long-suffering, patient husband and – gasp! – initiating an encounter.
“Once I had the diet down, I got it all under control,” Bast says. “When I began to talk about it with others, I realized that I wasn’t alone.”
In San Francisco, Zimbardo cut gluten from his diet and started taking anti-inflammatories and probiotics in order to get his gut’s flora back into shape. It took a year to undo the damage and get his mojo back, both sexual and otherwise. Now 79, he and his wife will celebrate their 40th anniversary on August 10 by renewing their wedding vows at the same Stanford University church where they married, and in the presence of their three children and grandchildren. Zimbardo shudders as he recalls losing his sexual drive and sense of self as his body changed, as his belly grew, as he burped and passed gas as food failed to pass properly through his intestines. He has a message for those suffering from symptoms: Get thee to a doctor because the first thing you want to do is look at the distinct possibility you have celiac disease.
“Changing my diet was nothing short of transformative,” he says. Now, I can’t wait to be 80. I get impatient with people who say, ‘Oh my God, you’re still doing it.’ Of course I am! And I plan to do it as long as I can. Sex should be a central part of your life, no matter your age.”
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See the NFCA’s Sex and the Celiac video below or at: http://www.youtube.com/watch?v=PnGq_Vz6TuE