Chef Tony Lawless was a 19-year old college student when his life changed forever. He was stricken by what would become the unrelenting pain of rheumatoid arthritis after breaking his wrist, the first sign of his lifelong struggle with the disease.
“I couldn’t sit in a chair for more than 20 minutes without my neck, shoulders and back feeling like they were seizing up,” Lawless, now 54, said from Deer Isle, where he and his wife own the seasonal Whale’s Rib Tavern and Pilgrim’s Inn.
Eventually he dropped out of school and returned home. On bad mornings it would take him two hours to get out of bed, and one day he told his mother he wanted to die. She helped him get through these dark feelings and keep his life moving forward.
Later he entered the Culinary Institute of America, graduated in 1984 in the top 10 percent of his class and went on to teach at the Cambridge School of Culinary Arts.
All the while he was in constant pain.
In an email he sent to family and friends in September, Lawless wrote: “Over the past 33 years I have lived my life in the 3-7 range on the pain scale and at one very low point I again considered suicide. In 2001 I electively had my leg amputated below the knee after an unsuccessful surgery to fuse my ankle bones left me in constant pain … I have had my wrist bone surgically fused, my elbows are permanently damaged and no longer straighten, and my fingers are bent and deformed.”
The disease forced Lawless to take a daily drug cocktail, which included Embrel, Humira and prednisone. As Lawless points out, each of these drugs has “links to cancer, liver damage and other serious and life-threatening side effects.”
Rheumatoid arthritis is characterized by severe inflammation and is among a class of poorly understood disorders known as autoimmune diseases. Such diseases cause the immune system to essentially attack itself.
As a result, immune-suppressing pharmaceuticals, such as the ones Lawless was prescribed, are the conventional treatments.
And with his immune system suppressed, Lawless landed in the emergency room more than once with out-of-control infections.
Still none of these drugs relieved his pain.
So his doctors prescribed an ever-increasing dose of narcotic painkillers. At this time last year, he was taking 60 milligrams of morphine a day.
But then everything changed again.
It all began when his wife, Tina Oddleifson, read a story in The New York Times Magazine titled “The Boy with a Thorn in his Joints.” The piece chronicles the plight of a 3-year-old boy diagnosed with severe juvenile arthritis who eventually is freed from pain when his parents eliminate gluten and dairy from his diet.
Oddleifson suggested Lawless give a gluten-free diet a try. But he was skeptical and admits that as a chef, special dietary requests can be a burden.
“It can be a pain in the neck trying to deal with people’s diets,” Lawless said. “I figured (gluten-free) was another stupid fad diet.”
However, his wife eventually convinced him to give it a try for a couple months.
After two weeks of not eating gluten, his pain level had subsided significantly. A month later he was pain free and a month after that he was able to stop taking six prescription drugs.
“For me it’s not a diet, it’s a lifestyle,” Lawless said. “Within 12 hours of inadvertently eating gluten, I feel like I’ve been hit by a bus.”
He adds, “For my entire life, I will never eat gluten on purpose again.”
In addition to avoiding foods with gluten, Lawless and his wife seek out minimally processed, organic and non-genetically modified foods.
“It’s changed my wife’s and my outlook on food and the food chain,” Lawless said. “You can pay more for good food and have that be your medicine or you can buy crappy food and take medicine.”
After his diet change, Lawless and the tavern’s chef went over the menu and discovered that roughly 80 percent of the dishes were naturally gluten-free.
The restaurant relies on local products and scratch cooking, which allows the kitchen staff to avoid many processed ingredients where gluten tends to lurk.
“We’re working on making our fish and chips gluten-free,” Lawless said.
The restaurant and inn will reopen for the season in May.
Being a chef certainly helped Lawless make the transition to gluten-free eating. Yet he points out that you don’t need special skills to cook gluten-free.
“If you’re one of these people eating processed food and you don’t really cook, yes it’s going to be difficult,” Lawless said. “But learning how to cook simple dishes so you can start cooking healthfully is really easy these days.”
Still, eliminating gluten (and all the foods in which it hides) has its challenges, even for chefs.
“I’m one of those people, I go into a restaurant and bread is my first course,” Lawless said. “Bread was one of the hardest things to give up.”
Recalling his former resentment of special dietary requests, Lawless said he hopes more chefs will become educated about the links between diet and health.
He credits the abundance of whole, local ingredients with making gluten-free cooking easy to achieve in Maine.
“Because of the availability of farm-to-table food, the chefs in Portland are doing a great job of keeping menus more real, making them more down to earth,” Lawless said.
These days Lawless is doing what he can to share his story as widely as possible in hopes that others with arthritis may find similar relief.
He knows that getting this information to others will be challenging because of skepticism (and often downright hostility) from doctors and the Arthritis Foundation to the idea that diet plays a role in the disease.
As he wrote in the email to family and friends: “I regularly tell my story with the hope it may help just one person avoid a life dominated by pain.”
Such a life is now just a memory for Lawless.
Avery Yale Kamila is a freelancer who lives in Portland, where she knows many people who have healed themselves with food. She can be reached at [email protected]