Celiac patient gets reprieve
A smile crossed Elizabeth Perry’s face when she passed the gluten-free section and made a beeline for the wheat bread.
“I haven’t had anything but gluten-free crap for the past nine years,” she said. “It’s going to be good to sink my teeth into this loaf.”
Perry is one of many people across the nation who are testing a new drug, which is marketed to help patients with Celiac disease by allowing them to eat foods that contain wheat, rye and barley. While it’s still in the testing stages, the drug is believed to raise the villi, small hairs in a person’s intestinal tract, opening up the receptors and allowing gluten to once again be absorbed into the person’s body.
Many, like Perry, are hopeful that the drug will be successful and that they can pursue eating foods without fear or consequences.
“You’d be surprised the amount of things gluten is in,” she said. “When I was first diagnosed, I had to throw away almost everything I used – even down to my toothpaste.”
Perry said she was diagnosed as a Celiac later in life than most. At age 32, she had to change everything in her life that became habit — something that, she said, was a difficult undertaking.
“I couldn’t just stop at Wendy’s for a hamburger whenever I was hungry. I couldn’t go to social functions, unless I brought my own food,” she said. “It was a living hell. I didn’t know how much of my life surrounded food — until it was taken away.”
Now, Perry said she has a tad bit of hope that her lifestyle could “go back to normal.” She has been on the drug for almost two weeks, and has seen a tremendous improvement. After being cleared by her doctor, Perry said she started eating gluten — but only in small doses.
“I started with saltine crackers,” she said. “Even that little bit made me nervous; I hate getting sick.”
But, she said, she gained confidence when she realized that she wasn’t experiencing any negative effects from her new lifestyle choices. With a newfound energy, she began to experiment with food — and soon discovered that she could eat a variety of foods, including oatmeal and pasta.
“It’s important to gradually work your way up,” she said. “Even with the medicine, my body wasn’t ready to handle the complex carbs all at once. These things take time.”
Perry said she has frequent conversations with her doctor, who is tracking her progress. While she doesn’t appreciate waiting in the doctor’s office each week, she said it will be worth it if she can eventually get to a place where she is able to eat anything she wants, at anytime she wants.
“It’ll be a dream come true,” she said.
Perry said her doctor said she could start trying to consume complex carbohydrates, starting with bread, starting next week. While she was excited about the possibility, she also is wary that it might set her back a few pegs.
“It’s always good to exercise some caution,” she said.
She plans to limit herself to half a slice of bread per day for the first week, and see how it plays out.
“It’s scary and exciting all at the same time,” she said. “But I’ve never let my fear stop me before, and I’m definitely not going to let it stop me now.”
She said the biggest motivation for her right now is to get to a point where she can eat her son’s cake on his fifth birthday — and she tries to keep that in mind when she goes through the long, arduous steps of the drug trial.
“It’s not always easy, but if you have a goal, it’s better somehow,” she said.
Meanwhile, she said she is proud of her success, and is glad she has finally reached the point where her physician told her she could eat even a small piece of bread.
“I never would have dreamed of making myself some toast before all this happened,” she said. “It would make me gag, or I’d be rolling on the floor with the worst stomach ache in history. It’s just not worth all that agony… unless, somehow, with the right drug it all goes away.”
Perry will be on the drug for another six months. While results aren’t guaranteed, she is hopeful for continued success and that she’ll be able to rejoin the society of gluten-loving Americans.
Last modified May 22, 2013