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.
But her suffering underscores the lengths to which some celiac sufferers used to have to go, even recently, to get the food they needed.
Nowadays, people who want to avoid gluten can choose from much more than matzo. This Passover, stores are stocking a wide — and ever-growing — array of kosher food products labeled gluten-free, from crackers and cakes to noodles and matzo ball mix.
FreshDirect, the online food retailer, has doubled its gluten-free Passover offerings to more than a dozen items this year, including cake mixes and panko flakes. Joshua Spiro, FreshDirect’s senior supply chain manager, said the company sold out of gluten-free matzo so quickly last year that he has bought in twice as much — about 720 pounds of the stuff — this year.
The rise in gluten-free kosher products is just part of a broader national sales boom for gluten-free foods. Sales for foods with a gluten-free label are projected to rise to $8 billion this year from $4.8 billion in 2009, according to the market research company Mintel. (Mintel makes the distinction “labeled gluten-free” because some manufacturers label as “gluten-free” foods that never had gluten in them in the first place.)
Menachem Lubinsky said that five years ago there were just a handful of booths showcasing gluten-free foods at the Kosherfest trade show, which he founded. This year there were about 35 such booths.
Lubinksy, a kosher marketing consultant, said that about 40% of annual kosher sales take place during Passover. So this holiday more than any other is a time when many companies like to introduce new lines.
Manischewitz, for example, is offering about 20 new products labeled gluten-free this year, according to Paul Bensabat, the company’s co-owner. These products include 15 different types of macaroons, two cake mixes, crackers and matzo-style squares.
The irony of kosher manufacturers launching such a plethora of gluten-free products at Passover is not lost on people with celiac disease. Due to their disease, they must avoid wheat-based matzo, the festival’s ubiquitous symbol. Yet traditionally, Passover has been a bountiful time for gluten-free foods.
The timing of the push is attributable to the practice of ultra-Orthodox Jews, who avoid matzo that comes into contact with water. So, manufacturers produce an array of other goods for the holiday — including cakes and cookies — that use potato starch as a base.
Elissa Strauss, whose mother has celiac disease and who was diagnosed with the disease herself nearly 15 years ago, recalled springtime expeditions into ultra-Orthodox neighborhoods years ago to stock up on kosher-for-Passover cakes and other delights.
“[Passover] is supposed to be a time when you limit what you eat,” Strauss said. “But for me, Passover was an indulgent time.”
Even non-Jewish consumers have caught on to the benefits of Passover as a time for people who are gluten intolerant.
At a Fairway supermarket on the Upper West Side of Manhattan one recent weekday evening, Denise Utt picked up a 1-pound box of Seder Table gluten-free oat matzo. “I’m not even Jewish,” said Utt, who has been shopping in the Passover aisles for decades. “I just like the stuff.”
Experts say that greater vigilance among doctors to spot celiac disease, and easier methods of testing for it, have been central to a huge growth in awareness of gluten intolerance during the past decade.
Lola O’Rourke, a director of the Gluten Intolerance Group, said celiac disease is thought to affect about 1% of Americans and that up to 5% of the population is believed to have some form of gluten intolerance.
But the gluten-free food boom has also been fueled by a perception that these foods are healthier or that they can aid weight loss. O’Rourke warned against this assumption. Just because a package says “gluten-free” does not mean that the food is automatically healthy, she said.
A gluten-free diet could be healthier for people who swap out processed foods with gluten for fruits and vegetables, O’Rourke explained. But processed gluten-free foods are not necessarily an improvement over their gluten counterparts. Removing gluten from food affects the food’s taste and texture, and manufacturers usually improve both by adding fat and sugar, “so often those processed food products will have a greater fat and sugar content than their gluten-containing counterparts,” O’Rourke said.
As a comparison, Yehuda matzos — made of just wheat flour and water — contain no fat, cholesterol or sodium. But Yehuda matzo-style squares — made of tapioca starch, water, potato starch, potato flour, expeller pressed palm oil, natural vinegar, honey, egg yolks and salt — contain 3.5 grams of fat, 10 milligrams of cholesterol and 120 milligrams of sodium per serving.
Sheryl Goldstein, FreshDirect’s gluten-free consultant, said she was “much thinner” when she was first diagnosed with celiac disease, eight years ago. But it has become harder to keep off the pounds as the gluten-free market has expanded to include cookies, crackers, bread, pizza dough, frozen meals and other products.
Some kosher companies, like Katz Gluten Free and Shabtai Gourmet, have been in the year-round gluten-free market for years. Others are moving in that direction. Bensabat said that Manischewitz is starting to roll out its gluten-free products as year-round items, and FreshDirect said it would try to offer gluten-free matzo year-round, too.
Still, for many celiac sufferers, Passover remains a special time of gluten-free gluttony.
Jonathan Papernick said he would order nine boxes of gluten-free Yehuda matzo from Amazon.com this year. He’s following a tradition his mother started many years earlier. After clearing up her bed, Papernick went into the kitchen and opened the freezer. “[It was] jam packed with Passover gluten free food she never got to,” he said.
Additional reporting by Anne Cohen.