Against the Grain
Peter H. R. Green became the go-to doc for a shadowy illness by learning to diagnose celiac disease.by David J. Craig Published Winter 2009-10
For dermatologist Robyn Gmyrek, it was the cruelest fate: After she had spent years performing cosmetic procedures on people with warts, acne, scars, and crow’s feet, in 2002 her own face erupted with lesions that itched and burned and caused her to claw at her skin until it was raw. “The suffering was beyond,” says Gmyrek, an assistant clinical professor at Columbia University Medical Center (CUMC). “It felt like my skin was on fire.”
What to tell her patients? Would they trust a dermatologist incapable of caring for her own complexion? “I was honest with them,” she says. “I told them I didn’t know what it was. Most patients were understanding. But it was difficult to go to work.”
Other doctors were puzzled by Gmyrek’s condition, too. They wondered if she might have an allergic reaction to chemicals commonly found in the air, or even lupus. They gave her steroids, antibiotics, and herbal remedies. Nothing worked. In fact, Gmyrek’s condition worsened over the next year, spreading to 70 percent of her body and forming open sores.
Eventually, Gmyrek began to suspect that she had a rash that stems from celiac disease, which is a severe allergic reaction to a protein called gluten that’s found in wheat, barley, and rye. Her dermatological symptoms matched. And yet something didn’t fit: Gmyrek recalled learning in medical school that all patients with celiac disease have chronic diarrhea, abdominal pain, and weight loss. That would figure, since celiac disease occurs when the small intestine, upon mistaking gluten for a toxin, attacks its own lining to diminish its absorptive power and thus seal off the rest of the body from the threat. Gmyrek didn’t think she had any digestive problems.
Nevertheless, she made an appointment at Columbia’s Celiac Disease Center, which is directed by Peter H. R. Green, one of the country’s top experts on the disorder. Green recognized her skin condition as dermatitis herpetiformis, whose only known cause is celiac disease. It occurs when skin cells attack themselves in a sort of autoimmune aftershock to the intestine’s self-destruction. Green performed a biopsy on Gmyrek’s small intestine a few days later to confirm she had celiac. “When I got out of anesthesia, Peter was there, and I could tell that he was excited,” says Gmyrek. “He told me I had one of the worst cases he’d ever seen.”
Why no diarrhea or abdominal pain? “That’s a misconception many doctors have,” says Green, an Australian-born gastroenterologist who speaks brusquely and with a rough-hewn accent. “Medical textbooks in the United States teach it wrong. That’s a big problem.” Only one in six people with celiac disease, he says, experience unusual gastrointestinal discomfort.
Gmyrek’s treatment was straightforward, if arduous to abide, as is always the case for celiac: She needed to follow a gluten-free diet for the rest of her life. So she cut out wheat in favor of alternatives like flax, oats, quinoa, teff, and buckwheat. Within a month, her rash started to fade, and a year later, it had disappeared for good. “I feel very lucky,” she says.