A pioneering celiac doctor explains the misguided origins of “the most popular diet that you can imagine.”
Dina Rudick/Globe staff
When you call out the behavior of millions of Americans, you have to expect some blowback.
So when I wrote my recent cease-and-desist letter to food allergy fakers and gluten-free posers, I thought I might need to run for cover.
Although the article, “Why Food Allergy Fakers Need to Stop,” went viral, the groundswell of angry, offended readers never materialized. Instead, the groundswell came from people who have genuine allergies and disease. In e-mails, phone calls, and on social media, they endorsed the call for diners to stop passing off their dietary preferences as medical conditions, and declared it was time for them to take back their movement from the posers.
No segment of this group voiced more alarm at the current climate than people with celiac disease, people whose bodies are unable to process the gluten protein composite in wheat and other grains. They weighed in from across the country and from as far away as Europe and the Middle East. “Speaking as a lifelong celiac patient, I was at points cheering through your article,” one letter began. “The fakers drive me totally [expletive] crazy.”
If the number of expletives used is any indication of the current frustration level among celiac patients and the chefs who are being overrun with trumped-up gluten “allergies,” we appear to be near a boiling point. One tweet included just the link the story and this message: “Speaking as a former line cook: This, this, a thousand [expletive] times THIS!!!!!”
No one has more standing to ring the alarm than Dr. Alessio Fasano, the physician-researcher at Massachusetts General Hospital who put gluten awareness on the map in this country.
When Fasano came to the United States from his native Italy in the early 1990s, the prevailing view in medicine was that celiac was a problem primarily for European kids and basically didn’t exist here. His decade-long study proved otherwise, and brought relief to a small group of long-overlooked, long-suffering Americans. But when he began giving talks on his findings, celiac patients told him, essentially, “Enough with the science. What we really want from you are recipes for gluten-free bread that doesn’t take like cardboard.” Hardly anyone outside this select group even knew what gluten was.
“Fast forward to 2015,” Fasano told me. “We did such a good job that the monster went all out of control.”
Gluten-free is now a $23 billion a year market in this country. Food manufacturers have rushed to fill supermarket shelves with every imaginable product labeled “gluten-free” – many that never contained gluten to begin with. “The gluten-free diet,” Fasano said, “is the most popular diet that you can imagine.”
How did it happen? A pivotal moment came in 2008 when Oprah Winfrey announced that she was going on a cleanse and would cut gluten from her diet. Traditional bakers around the country probably gulped, or at least they should have. By the time other celebrities hopped on the bandwagon, gluten-free was well on its way to becoming a dietary juggernaut.
In stepped diet book peddlers and even a few outright hucksters. There’s a guy in North Carolina serving a nine- to 11-year prison sentence for fraud, after he was caught buying regular bread from Costco and other stores, repackaging it as gluten-free, and selling it for a huge markup.
Helping to propel this explosion has been the wide spectrum of gluten-avoiding people. About 0.3 percent of the US population has a wheat allergy – for them, eating even trace amounts of wheat can cause anaphylactic shock. About 1 percent of the population has celiac disease. Another 5 percent to 6 percent, according to Fasano’s estimates, have genuine gluten sensitivity. For this group, avoiding gluten is essential because the protein composite will often cause painful gastrointestinal symptoms like bloating and diarrhea, although those symptoms tend to be milder than what people with celiac disease suffer. More important, these symptoms produce no long-term damage. For celiacs, eating gluten slowly destroys the villi lining their small intestines and over time can hasten death – so for them, avoiding gluten is very serious business.
But Fasano says the vast majority of the contemporary gluten-free universe involves people who, in the Oprah tradition, avoid the stuff purely for lifestyle reasons, and not out of medical necessity.
Most celiacs say they have no problem with other people avoiding gluten because of dietary preference. After all, the vast expansion of the gluten-free ranks is the reason people with celiac disease have so many more choices these days at the supermarket and on restaurant menus. But what has so many of them furious is the explosion of people pretending to have a medical condition around gluten when, in fact, they just want special attention.
For celiacs, accommodations in restaurants and elsewhere have made it possible for them to venture out into the world like everyone else, without being paralyzed by fear that they will risk doing serious harm to themselves. Yet as the face of gluten-free increasingly morphs into a self-involved poser, celiacs worry that people will stop taking their disease seriously, and their hard-won accommodations will become casualties. While faddists can move on to another fad diet, celiacs must avoid gluten for life.
As Dr. Sheila Crowe, a physician-researcher at the University of California San Diego, told me, “For people with celiac disease, gluten is basically poison to their body.”
One of her patients told her recently about an experience dining out. When the patient told the server she needed to eat gluten-free, the server roll his eyes and said, “Oh, you’re one of those.”
The tension in restaurants may only increase in the short term, as portable meters come on to the market that will allow diners to test their meals, tableside, for the presence of gluten.
Crowe says that although the only current treatment for celiac disease is avoiding gluten, eventually effective medications will come. But when those meds come, she says, they are likely to be expensive. And insurers are going to balk at paying for them for patients who don’t actually need them. “We are going to need documentation,” she said.
Celiac is diagnosed through a combination of blood test and intestinal biopsies. Currently, there is no test for gluten sensitivity/intolerance, but that too will come.
For Mass. General’s Fasano, the biggest frustration with the market-fueled distortion of his research is that so many people are now diagnosing themselves with gluten intolerance without ever going to their doctor to be sure.
Celiac is an autoimmune disease. When people who suffer it eat gluten, the body goes to war, but mistakenly turns on itself, starting with the small intestine. The first step doctors use to diagnose it is to look for biomarkers in the blood, evidence that the body has girded for battle. But Fasano stresses that people who stop eating gluten without going for a medical consult will deprive the doctor of the key diagnostic tool if they ever do want a real diagnosis. Since those people stopped eating gluten, there will be no biomarkers.
In my original piece, Fasano tried to point out the folly of these self-diagnosers with a comparison to another disease. “You don’t say, ‘I’m drinking a lot and peeing a lot, so I must have diabetes,’ and then start injecting yourself with insulin.”
For celiacs, gluten-free is a therapeutic intervention. Fasano has a simple message for anyone who tells a waiter they’ve got a medical condition involving gluten, when in reality they’re just trying to cut carbs: “Shame on you.”
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