For Her, FDA’s Sulfite Ban Is Good News, but Too Late

For Jo Valone of Mission Viejo, the Food and Drug Administration’s decision Wednesday to ban the use of sulfites was good news, but it came too late.

On Feb. 26, 1984, after eating cottage fries in a restaurant, she nearly died because of her allergy to the food preservative, which apparently had been used on the potatoes. She slipped into a coma for three weeks, was hospitalized for five months and is still undergoing therapy for brain damage.

The FDA ban “makes me happy, but I’m sorry they haven’t done it sooner for the other people who have died from it,” said Valone, 44. And the action does not go far enough, she said, adding: “They should ban it from all foods.”

The FDA ban prohibits use of the preservative on raw fruits and vegetables, such as in salad bars. It does not address the use of sulfites in prepared foods or wine.

Dr. Sherwin A. Gillman of Orange, who specializes in allergies and is one of Valone’s physicians, echoed her sentiments.

“It’s a long time coming. It should have been done a long time ago,” he said Wednesday. The FDA has been alerted to the dangers of sulfites for about six years, he added.

He and his partner, Dr. Leo H. Cummins, have about a dozen patients with a “documented sulfite sensitivity,” diagnosed after they ingested increasing amounts of sulfites under controlled situations, he said.

“A lot of people read about it (the sulfite allergy) and they say, ‘Every time I drink wine, I wheeze.’ But it might be any of a number of other things that do that to them,” Gillman said.

His patients are given a list of precautions to avoid sulfites, and topping the list is staying out of restaurants, he said.

Even though restaurants now are supposed to notify customers of sulfite use, often the preservative is used on food before it reaches their kitchens, he said.

That apparently was the case when Jo Valone ate the cottage fries 2 1/2 years ago. She previously had been diagnosed as allergic to sulfites, so she knew to be extra careful when she ate out, she said.

Her husband, Bob, has told her that she did not let down her guard that night. (Valone remembers nothing of her near-fatal dinner.) They asked the waiter if the cook used any preservatives, she said. “My husband told them I’m deadly allergic to sulfites. They said no. He said: ‘Would you go back and check in the kitchen.’ They came back out and said no, they used nothing on them.

“It wasn’t five minutes, and I was out cold.”

At first, doctors did not believe she would live, she said. Then, when she came out of the coma, they said it was doubtful that she would ever walk or talk again. Her vocal cords had closed during the respiratory attacks, and doctors had to perform a tracheotomy, creating a hole in her windpipe, she said.

Today she is walking and talking, but the recovery is slow. She suffers from asthma and still has little dexterity in her hands; picking a piece of paper off the floor or buttoning her blouse still is impossible. Several weeks ago, she began driving, but she is afraid to go more than a few blocks from home because “I can’t manipulate my hands,” she said. She is just now beginning to write again.

If the FDA ban on sulfites is “realistically enforced,” Gillman said, it will give people allergic to sulfites “a lot more freedom. But seeing the bad reactions I’ve seen, I wouldn’t be too cavalier” about taking precautions. Sulfites still can be used in processed foods, such as potato chips, he said.

“You’re never sure when you go into a restaurant what’s been sprayed or used to retard spoilage. . . . If I was in their position, I’d just stay away from restaurants,” he added.

Valone and her husband do go to a few restaurants “where they know me specifically,” and they make sure that her food is free from sulfite. “But we still ask every time,” she said.

The FDA ban, while good news, won’t change her dining habits, she said.

“I’m still leery about taking chances. I don’t think I could go through it again. But I’m a fortunate one. I’m alive.”