In 2004, when he was a year old, William Finkel was rushed to the emergency room after taking his first bite of bread. His throat immediately began to close and his body became itchy, enflamed, and swollen. After two epinephrine injections, steroids, Benedryl, Zertec, oxygen and a nebulizer Will was diagnosed anaphylactic to gluten, an extreme, life-threatening allergy.
His mother, Jillian Pransky, wrote in a 2015 blog post, “I can vividly remember rushing him to the hospital as his eyes disappeared into a ballooning face, and his neck exploded like the hulk. He was 11 months old and had just taken his first bite of bread. Yes, today the gluten-free food market is booming, but imagine 13 years ago when no one knew what gluten was.”
Gluten a substance in grains, particularly wheat, that gives dough its elastic texture. When Will was born in 2003, being anaphylactic to gluten had yet to be widely explored. Food was limited, restaurants were unaware, people offered treats without hesitation, and days were spent probing waiters, analyzing labels, wiping down shared toys and preventing cross contamination.
Though, around the time he turned 8 or 9, William, now 13, remembers things starting to change. The gluten-free trend had started to emerge and research and studies became more common, restaurants started offering gluten-free menus and GF products filled shelves. Finally he had options. Yet, that didn’t mean he was any less allergic. Everyday was still an endless battle to prevent an accidental reaction.
LISTEN to Will talk about a severe reaction he had at friend’s house.
Then, in 2014, Will had the opportunity to participate in a clinical research study at Mt. Sinai hospital in New York City. The study used Oral Immunology Therapy to reduce the severity of his allergy. As part of the process, they had to determine exactly how much gluten would cause William to react and therefore had to purposely induce anaphylactic shock.
William’s parents were hesitant at first.
“Initially I was very apprehensive and thought, ‘Purposely expose William to wheat? Why? We got this down! Besides, isn’t every one a little better off without wheat in their diet?’” Jillian said.
“But the threat of cross contamination from shared butter or a shared toaster was constant. Meals at friends’ houses, camps, overnights always came with excessive planning and great stress. I needed to know he could be safer out in the world.” She added.
LISTEN to William talk about being introduced to the study and the two-year process.
William was admitted into the study as one of 40 participants. Even though he was involved at Mt. Sinai, other contributing hospitals included Johns Hopkins, Stanford, and Children’s Levine Hospital in Chicago. The study began by seeing how much wheat it took to get William to react. He went into anaphylactic shock at 13 mgs and so they started his treatment at 3 mgs of wheat that they mixed with chocolate. From then on, he ate microscopic amounts of wheat each day, increasing his dose every two weeks, for two years.
It was a blind study, which means half of the participants were given a placebo and half of them were given the wheat. Both were in powder form and both looked exactly the same. After one year, the participants were once again tested to see what measurement they reacted to and then were told if they were given the placebo or the wheat. This was to test if the reaction would be less extreme if the participant thought they had been taking the wheat for the past year. After that year, those who had the placebo were then given the wheat to finish the remainder of the study. After the two years, the results of the two groups were compared.
In William’s case, and to his relief, he had been taking the wheat since day one and finished the last year of the study continuing to increase his intake. After the full two years, he was able to go from having an extreme reaction at 13 mgs of wheat, equivalent to the cross contamination of sharing a butter knife that had touched wheat bread, to being able to ingest 4443 mgs, almost a whole slice of bread.
A six-week break was taken after the study to see if the results were temporary or permanent. His doctors concluded that he would have to continue to eat 2000 mgs of wheat daily in order to keep up his tolerance. They provided a list of measured foods for him to eat each day.
Though, he actually still prefers the taste of gluten-free food, he enjoys being able to try a whole new world of foods. His favorites being chocolate lava cake, doughnuts, and of course, pizza. Being able to enjoy his day with tremendously less stress or fear of consuming gluten by accident has changed his entire life and his family’s.
Jillian’s blog posts of their journey:
The Big Change Up – April 10, 2014
Will & Grace: Two Wings to Fly – May 5, 2016
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