People with celiac disease face a food paradox. Gluten-free bagels, brownie mixes, and frozen burritos beckon from grocery store shelves. Yet despite this abundance, they can’t trust that these foods are actually safe to eat.
The story of how the food industry went gaga for gluten-free products, putting the health of people with celiac at risk in the process, takes center stage in Emily Abel’s new book, “Gluten Free for Life: Celiac Disease, Medical Recognition, and the Food Industry.” The underlying issues range from inaccurate food labels to a culture that often treats gluten-free eating as a lifestyle choice rather than a medical requirement — giving food manufacturers and restaurants more leeway to play fast and loose with the term. (Indeed, sometimes the gluten-free label is randomly attached to foods containing vegetables and fruits, for instance, that one would never expect to contain gluten.)
Under current labeling rules, for example, manufacturers must disclose whether their products contain wheat (a major food allergen) but not rye or barley. All three grains contain gluten.
“A critical feature of the celiac experience is that unless people have the time, skill, money, and inclination to prepare all their meals from basic ingredients, they must rely on an industry that has minimal interest in their well being,” writes Abel, a professor emerita at the Fielding School of Public Health at the University of California, Los Angeles.
Abel has a personal connection with celiac. Multiple members of her family have the genetic autoimmune disease, which affects about 1% of the population.
“Neither of my daughters eat processed gluten-free food,” Abel told STAT, noting that they both cook at home. “My two grandchildren I think probably do, just because they’re in their early 20s and they’re not as careful.”
Getting inadvertently “glutened” by a food that claims to be free of the protein can have big health consequences. Gluten triggers an immune reaction that causes damage to the small intestine and reduces the body’s ability to absorb nutrients, which can lead to issues ranging from gastrointestinal problems to headaches, fatigue, and weight loss. There can be longer-term problems, too: People with celiac who don’t follow gluten-free diets have higher risks of conditions like small bowel cancer, infertility, and loss of bone density.
STAT spoke with Abel about current labeling laws, why gluten-free foods often contain higher levels of sugar and salt, and the influence that food manufacturers can have on celiac advocacy groups.
This interview has been condensed and edited for clarity.
There was a period where it was very hard to find any products that were gluten-free at all. How did the food industry start chasing the gluten-free market?
Health claims sell food, and the industry decided: Gluten-free, maybe this was something that could sell a lot of products. One of the first was General Mills, and its production of gluten-free Cheerios began an enormous controversy. I’d say it was the early 2010s that the food industry started to get involved.
Since you just mentioned Cheerios, can you expand on where that controversy stands today? You describe in your book how General Mills introduced gluten-free Cheerios in 2015, which was a big deal because oats are naturally gluten-free but easily cross-contaminated by other grains. But then customers with celiac disease and gluten sensitivities started to report getting sick.
Where it stands now is that some people say that there’s no problem, but a lot of people say just avoid them.
The problem is that they’re made of oats, and there are two ways that you can get gluten-free oats. One is to get certified gluten-free oats — in other words, they are processed in such a way that there’s no gluten in them. But others have some kind of cleaning mechanism at the end. [Editor’s note: Cheerios are cleaned via a grain-sorting system at the end of the production process.]
A very fine nutritionist named Tricia Thompson has said don’t trust any oats that are not certified; that the cleaning process just isn’t safe enough. But the Celiac Disease Foundation and many other groups say that gluten-free Cheerios are fine. It’s still an issue that’s dividing the celiac community.
It’s really illustrative of how when a food is labeled gluten-free, people with celiac can’t always trust that.
It’s very hard for people with celiac, because labeling isn’t always accurate. There are certain standards now that the FDA has set, so that food that is labeled gluten-free should not have more than 20 parts per million (ppm) of gluten in it. It’s really almost impossible to say that there couldn’t be any gluten. But still, people eat food that’s labeled gluten-free, and they still get “glutened,” as they call it.
Because the 20 ppm cutoff can still be too much for somebody who has celiac?
It can, or it can also be that you can’t really trust the food labels, or maybe you read them a little differently, or maybe there’s some kind of warning someplace you’re not looking at. These labels are sometimes really difficult to understand. Or maybe the product has changed a little, and you’ve eaten one version and that is another version. It’s really hard to be absolutely sure that you’re eating gluten-free food.
You also discuss the cross-contamination issue, where there’s not gluten in the food itself, but it was made on equipment that used gluten.
Yes, that’s really a problem at colleges, universities, at schools, in prisons, and of course in restaurants. You can request gluten-free food, but you have no guarantee that it’s following the strict regimens that need to be followed.
Are there regulations that could help make a difference in improving the labels of gluten-free foods?
Well, one thing is certainly the standards have to be enforced, and we’re counting on the FDA to do that — Lord knows what the FDA is going to be like in this new administration, and even before then, the FDA has been delayed in enforcing its regulations.
The two big concerns now are medications — there are no regulations about that — and there are no regulations for restaurants, which is just terrible.
I was also really interested in your point that a lot of the food that is gluten-free is also ultra-processed, and it can be hard for people with celiac to resist them post-diagnosis because they’re looking for replacements for familiar favorites.
A lot of it is ultra-processed, and in fact it’s even worse than a lot of ultra-processed food, because to take gluten out really hurts the flavor. So to make these foods appealing, the manufacturers put in more fat, more salt, and more sugar.
Only one of the five big celiac advocacy groups (Gluten Free Watchdog) doesn’t accept ads or funding from food manufacturers. What are the concerns around that?
I want to say first that [the advocacy groups] do an incredible amount of good work. They really provide an enormous amount of information for people with celiac; some of them provide grants, and they fund research.
My concern is the concern that people have with all health advocacy organizations, which is that they take money from groups that are not totally in line with their mission, and I have doubts about aligning oneself with the food industry.
What nutritionists tell people is, avoid all packaged food. But the ads for gluten-free foods just permeate all the materials that some of these organizations put out, and I think that really contradicts their mission.