That "Gluten Intolerance Is BS" Study Is Making My Life A Battle

Want to learn one cool trick to perfectly blend fat-shaming, fear of chronic illness, and a disregard for science?
Publish date:
June 1, 2014
science, gluten-free, gluten, celiac's disease

Want to learn one cool trick to perfectly blend fat-shaming, fear of chronic illness, and a disregard for science? Look no further than most coverage of the recent gluten intolerance fiasco.

Dr. Peter Gibson’s37-subject study , funded by George Weston Foods Limited, “one of Australia and New Zealand’s largest food manufacturers,” (cool, they make breads) has been getting a lot of coverage and attention in popular media. Its source of funding isn’t getting much coverage. Not that the fact that a company that makes big dollars off selling gluten-filled products necessarily means the results should be thrown into question, but it’s another example of what does and what doesn’t get covered in popular media. The study’s “findings” are being presented as a kind of click-bait dream, taking down those who eschew gluten “because science” says they’ve been wrong all along. The problem is, those aren’t the findings.

The study was conducted on a group of patients with “self-reported non-celiac gluten sensitivity.” Now I’m not a scientist, but I do have celiac. Popular reaction to coverage of this study, based on the very scientific evidence I’ve seen in my Facebook feed, is about as scientifically sound as the results that most people seem to be attempting to distill from the study itself: in other words, not at all.

Gluten free has become something of a mainstream idea and, weirdly, ideal, in the last few years. The very popularity of the diet among those without celiac or other dietary issues points at something pervasive in our fat-shaming culture. We are always looking for the next get-thin-quick scheme.

I first found out I had celiac, six years ago, after a lifetime of illness and GI problems. Until that point, my illness had been repeatedly dismissed by family, friends, and doctors as being “in my head” or due to my “anxiety.” Well, I was pretty anxious. Having diarrhea every day and being regularly hospitalized will do that to you. When I finally learned why I felt so awful, I was told on multiple occasions that at least I’d lose weight on this new “diet.”

What baffled people even more than the possibility that something as innocuous as plain old bread could irritate and invoke a chronic illness was when I countered this illusion that the change in eating should result in weight loss. I initially gained weight on a gluten free diet. I gained weight because for once I was actually receiving nutrients from all the foods I was eating. Being gluten free also meant a virtual end to my moderate asthma, which had been severe as a child, as well as the chronic recurring sinus infections I dealt with for a decade.

Perhaps for some, or even many, gluten free, like vegan before it, is a veiled and well-constructed way to cut out large categories of food while attempting to lose weight. For me, it was and is a way of eating that provides an almost unbelievably improved quality of life.

One of the many problematic ways that Dr. Gibson’s study is being treated in the press is that it glosses over the differences between someone who has been diagnosed with celiac, someone who experiences GI and other symptoms and switches to a gluten free diet in a hopeful attempt at finding some sense of relief, and some idiot who makes it hard for me to feel safe eating anything I haven’t prepared.

Thanks to Jimmy Fallon’s skit and gluten as a running joke, I now assume most food service folks think I’m just another ignorant pain in the ass and are rolling their eyes at me and ignoring my explanations. This even if I’ve gone through the process of finding a place that has a selection of naturally gluten free items on their menu and I know they will be able to accommodate my needs without too much additional effort.

We live in a culture that equates health care with medication and surgical intervention rather than lifestyle changes. It’s the same culture that values a kind of deceptively limited, and morally tinged, as in, it’s your fault, on some level, if something is wrong with you, picture of what consists of “health.”

We are uncomfortable with the disabled and with those with chronic illness. For many who suffer autoimmune diseases, diagnosed or undiagnosed, this translates into their seemingly elusive or mysterious pain and suffering being treated as figments of their imagination or the results of manipulative personalities.

Add to this narrow and ignorant vision of health the fact that we are on the scientifically illiterate side when it comes to understanding statistics and interpreting just what it is and isn’t that makes “good science,” and coverage of Dr. Gibson’s study is a great illustration of how most journalism seems to be leaving our talented and rigorous science writers back with the other unemployed freelancers and instead running with a TMZ-style appetite for scandal rather than our deeper need for nourishment in the form of knowledge about our world.

Somebody must be benefiting from this system. Is it that by keeping us in the dark about science and health we won’t demand the fair treatment we deserve? Or is it just the big business of food working the machine to keep the antibiotic-fueled post-WWII status quo going as long as possible?

What does this study actually point at, after all? The subjects had symptoms that seemed unrelated to the diets studied in terms of original expectations concerning gluten. It didn’t say the patients were lying. It didn’t say they weren’t experiencing symptoms. It didn’t even say gluten wasn’t a part of the problem for them.

Misdiagnosis and further shaming of people with chronic illnesses does nothing to help the larger body of knowledge, and empathy, available to all. Coverage of this study seems to imply that people who choose to eat gluten free are lying, furthering the stereotype of the crazy and dramatic hypochondriac. Coverage also perpetuates a kind of subtle fear of science in it’s “Look guys, science thought it this, but now it’s really that!” gee whiz approach.

Perhaps this study will serve the greater good, in addition to serving the bottom line of the company that funded it, by helping to further narrow down what is at the root of the illness in the population studied. The general public probably won’t hear about that though, at least not via what currently passes for science coverage in popular media (and online editors, “because science” and any variation thereof is a lazy, arrogant attempt at a takedown through a get-clicks title).

Instead, we choose schadenfreude as a response. It’s a common phase in the general public’s embracing of fill-in-the-blank diet trend of the week. We are so obsessed with physical perfection, so tolerant of fat-shaming, and so desperate for quick-fixes to problems that may or may not even exist (thigh gap? There’s a “need” for that?), that our ability to process information around food and wellness is seriously compromised…kind of like my immune system if I ingest any gluten.

In this context, it is no surprise that it starts to feel good to say, “Ha! I knew this was bullshit! Now give me a bagel and shut up you whiny self-righteous gluten free bitches!” followed quickly by “I’m doing a new muscle confusion workout and I don’t eat sugar on alternate days of the week.” We are profoundly uncomfortable with listening to our bodies and nourishing ourselves in ways that make us truly feel good. There’s been a disenfranchisement most of us don’t even recognize.

In my personal journey of diagnosis, and through the staggering realization that, given my family history, this is likely only a piece of a larger auto-immune puzzle, I’ve learned a lot. In the years since I’ve gone gluten free it has been humbling and painful that I’ve developed additional food allergies and intolerances and am forced to take an aggressive stance when it comes to anything I ingest or use topically.

And although I immediately felt validated once I learned that the years of pain and occasional agony really were due to something concrete and quantifiable happening in my gut, the rest of the world continues to think I’m just another over-sensitive, fraught, conniving w o m a n.

Popular media coverage of this study accentuates and aggravates the cultural discomfort we have around difference. Not only do we lack scientific literacy, we lack nuance, empathy, and understanding when it comes to what it takes for each individual to be and to feel well, and probably for a whole lot more.