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The gluten-free craze is making celiacs like me sick

AP Photo/Matthew Mead
Can celiacs trust big-name brands?
Published This article is more than 2 years old.

Last week, for the first time in twelve years, I got glutened.

That’s a celiac sufferer’s slang for inadvertently eating enough gluten from a mislabeled food to get physically ill. For a week, I slogged through with a bloated belly and blood in my stool.

As far as I knew, I hadn’t eaten anything to set off my celiac disease. I was noshing on only healthy whole vegetables, fruits, meat, cheese, eggs and fish. And of course, there was my daily breakfast of certified gluten-free buckwheat—drizzled with melted butter and tupelo honey, and absolutely delicious. It was made by a famous manufacturer renowned for its dedication to the gluten-free consumer: Bob’s Red Mill.

I can’t say for certain what glutened me. But it seems to me that I’m likely to get glutened more and more often in the coming years if I trust the so-called gluten-free foods of today. Since gluten-free food has become our trendiest culinary fad, manufacturers large and small have been rushing in to produce gluten-free products. It’s getting harder for celiacs to know which brands they can trust.

It’s getting harder for celiacs to know which brands they can trust.

According to an October report by leading research and market intelligence agency Mintel, one-quarter of Americans now consume gluten-free foods—a 67% increase from 2013. The gluten-free category has experienced growth of 136% from 2013-2015, with sales of $11.6 billion in 2015. North America and Latin America lead the pack with 19.7% and 19.8%, respectively, of new products launched in 2014 carrying the gluten-free banner.

But while the average consumer may choose gluten-free foods simply because they believe they will be healthier, gluten is a matter of life and death for people with celiac disease. Untreated celiac disease carries up to a four times greater risk of death. According to scientific research, celiacs can experience health problems after consuming just 10 milligrams of gluten a day. After a week of more than such trace amounts, up to half of celiacs will have significant, perturbing changes in the appearance and function of the lining in their small intestine. So people with celiac disease need to be vigilant about avoiding foods that could be cross-contaminated with gluten.

“People really do not understand that the gluten-free diet is for celiac what insulin is for diabetics,” Alessio Fasano, MD, a specialist in celiac disease who holds the W. Allan Walker Chair of Pediatrics at Harvard Medical School, tells Quartz.

“People really do not understand that the gluten-free diet is for celiac what insulin is for diabetics.”

The FDA requires that foods labeled “gluten-free” must contain less than 20 parts per million. Foods labeled “certified-gluten free” may be held to even stricter standards—such as 5 or 10 ppm, depending on the certifying organization. But recovery of inflamed, damaged intestines eludes more than a third of celiac sufferers, and researchers think it’s likely due to cross-contamination.

Clearly, the labels aren’t doing enough. In fact, I believe the gluten-free fad has become so lucrative that companies are getting sloppy, as well as secretive, about the sourcing, production and testing of gluten-free foods.

General Mills, for example, now faces a class-action lawsuit for shipping—and then later voluntarily recalling1.8 million boxes of gluten-contaminated Cheerios that were labeled gluten-free. Though class action lawsuits after recalls are not uncommon, the celiac community has been up in arms about the exposure, which made numerous children and adults sick.

“In an isolated incident involving purely human error, wheat flour was inadvertently introduced into our gluten-free oat flour system,” Jim Murphy, senior vice president of the company’s cereal division, said when the recall was announced in October.

General Mills confirmed to Quartz that on 17 days, in one of their Cheerios facilities, they did not test their final packaged product for the presence of gluten. (They claim to test three times in the process of making gluten-free Cheerios.) But testing final products is exactly what celiacs need from manufacturers, in order to catch human error.

Testing final products is exactly what celiacs need from manufacturers, in order to catch inevitable human error.

Another problem is that General Mills sources regular The New England Journal of Medicine. Commodity oats are often grown adjacent to, or in rotation with, crops that contain gluten, and processed in facilities that contain those crops as well.

Such oats are more likely to be cross-contaminated by gluten from very-similar looking barley. General Mills and other manufacturers have admitted to using mechanical and optical sorting machines to clean these commodity oats. The machines were originally designed to sift grain and remove foreign grains, stones, sticks and other debris. They haven’t been proven purify the oat supply to meet a gluten-free standard. They may miss some grains, which would then be ground up along with the oats.

General Mills’ gluten-free testing poses another issue. The company ensures that its products meet a gluten-free standard by taking the average of tests from twelve extractions. That raises the question whether some samples that test higher than 20 ppm could be packaged and shipped. Thompson tells Quartz: “All extractions from all boxes should test below 20 ppm gluten.”

Another serious concern, says Thompson, is that gluten is not evenly distributed in oat grain or flour, or even in extractions used for testing. Over a period of weeks earlier this fall, Thompson paid an independent laboratory to test five boxes of gluten-free Original Yellow Box Cheerios. These boxes were still available and were not part of the Cheerios recall. She reports that, “The results illustrate that gluten contamination varies by box and that gluten contamination within each box of Cheerios is difficult to evenly distribute.”

General Mills is not the only manufacturer that raises questions for me. For years, Bob’s Red Mill has boasted on its website that it sources only “purity protocol” oats from Canada (grown under strict standards that ensure the oats are gluten-free). But the company has started using suppliers in recent years that rely on sorting technology to separate commodity oats from other grains containing gluten.

They admitted the truth to Thompson on Nov. 12 when she asked them in writing, noting that “Our suppliers are innovative in controlling the presence of gluten by either avoiding crop rotation with gluten containing grains or using optical sorting technology to remove grain containing gluten.” Bob’s Red Mill was also slapped with a recall in 2013 when a spot-check of their sorghum flour by Canadian authorities found it contained excess gluten.

I asked Matt Cox, vice president of marketing at Bob’s Red Mill, how they test. He said they use a scientifically validated method called R5 Elisa, and that “incoming product/ingredient shipments that are to be processed as gluten free are typically sampled 22 times per load.” Bob’s Red Mill did not respond to my requests for further clarification about the testing process, including whether, like General Mills, the company uses the average of their tests from the 22 extractions.

A number of other companies also use commodity oats mechanically and optically sorted to be gluten-free, including Grain Millers, which recently sold its Country Choice brand to Nature’s Path, and Quaker Oats. Last October, Quaker debuted three “gluten-free” oatmeal products—Quick 1-Minute Oats, Instant Oatmeal Original, and Instant Oatmeal Maple & Brown Sugar.

Some manufacturers play on consumer naiveté by using sleight of hand.

Finally, there are the manufacturers who play on consumer naiveté by using sleight of hand. They advertise their foods as “naturally gluten-free.” But this doesn’t tell celiacs whether those foods could be cross-contaminated. A case in point: Umpqua oat products. Says Thompson:

According to a photo sent to me, product packaging includes a “no gluten ingredients used” versus a “gluten-free” claim. Products making this claim do not have to comply with the FDA gluten-free labeling rule. Based on photos of product packaging on the manufacturer website, the label also includes a logo (see image) that could be very confusing.”

A final issue is that every company considers their testing data to be proprietary. This means celiacs simply have to trust that they are throwing out any product with more than the legal 20 ppm. But would manufacturers get away with advertising grams of sugar for diabetics—and say their test result verifying that sugar level was proprietary, or that nobody should know the test results outside the company?

As more companies embrace the gluten-free fad, a growing number of celiacs like me may be forced to reconsider our purchasing habits. Lately, I’ve begun turning to smaller, more stringent firms like Portland’s Big River Grains or Canada’s Kinninnick, or local purveyors of, say, stone-ground heritage corn from places like Riverview Farms. Nary a gluten-containing grain passes through their production facilities in the first place–which means I can sit down to a bowl of oats in the morning without gambling on my health.

📬 Kick off each morning with coffee and the Daily Brief (BYO coffee).

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