Drawing on her last reserves of energy, Merilyn Papernick, a terminal cancer patient, reached out to some local Hasidic Jews in her hometown of Toronto to place a special Passover order: Could they get her gluten-free oat matzo for the upcoming holiday?
Papernick, who was 65, suffered from celiac disease, a digestive illness that prevented her from eating wheat and other grains containing gluten, and the Hasidim were the only people she knew who could source the rare oat-based matzo.
Papernick died shortly after making the request. While cleaning up her home after the funeral, Jonathan Papernick, her son, found matzo crumbs covering the bed. He also found the package of oat matzo, on which was inscribed, “This is not a gluten-free product.”
“That was the last thing that killed her, eating gluten,” Papernick said, referring to the two boxes the Hasidim gave his mother for free — apparently mistakenly — as a mitzvah. “She went out with that horrible feeling of gluten in her body.”
Today, just three years after her death, Merilyn Papernick would face no such harrowing hurdles. Celiac sufferers can now take their pick of clearly labeled gluten-free matzo baked by small-batch producers like Lakewood Matzoh, and from large manufacturers such as Yehuda and Manischewitz, both of which have released gluten-free “matzo-style” squares during the past few years.
The two manufacturers label the products this way because they use tapioca starch and potato starch as their base. And matzo made without one of five grains — wheat, barley, oats, rye or spelt — does not fulfill the religious commandment to eat matzo during the Passover Seder. But many gluten-intolerant customers don’t care.
“For [secular] people like me, it’s great,” said Papernick who, like his mother, suffers from celiac disease.
Papernick bears no ill will toward the Hasidim. He said that his mother, who died in 2010, was so weakened from cancer she probably would not have lived much longer anyway.