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 Beyond Celiac 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 in his early 80s, [Editor’s note: updated in 2017] he and his wife will celebrate their 45th anniversary on August 10. 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. As a senior, “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