June 2014 – By now, we likely all know someone who has taken up the gluten-free diet just to “feel better” or “lose weight”, or for various unspecified reasons. This is baffling to those with celiac disease or food allergies or gluten sensitivity. When you live with food restrictions or else – you really don’t relate to food fads. I mean, who willingly signs up for avoidance?
But of late it has become fashionable to make fun of those on their not-medically-required gluten free diets. You might say they asked for it, except for two disturbing facts: first, why is it our business what someone chooses to eat; and second, derision swipes with a broad brush. Those on gluten-free diets for the right reasons – celiac disease or non-celiac gluten sensitivity (aka NCGS) – have been caught up in the scorn being heaped.
The latest round of gluten-free bashing began in May 2014, when a segment from Jimmy Kimmel Live called “What is Gluten?” popped up on YouTube. The four people in this “streeters” segment identified themselves as being on a gluten-free diet, but none of them had a clue what gluten was. That was kind of funny, and ridiculous. But what wasn’t amusing at all was the video’s fallout.
Kimmel has a big following, and in the days that followed, Twitter and Facebook howled with superiority: the gluten-free diet was called nonsense and worse, and no “medically required” exceptions were allowed in 140 characters. Maddeningly, this took place at the start of Celiac Awareness Month.
Next came a flurry of headlines denying that NCGS even exists. The Real Clear Science website got things rolling, in a report about an Australian study that involved 37 individuals who self-identified as having both NCGS and irritable bowel syndrome. Aside from gluten’s effects, researchers at Monash University are also studying FODMAPS, the fermentable, short- chain carbohydrates that are present in many foods, including wheat, barley and rye. After monitoring study participants’ symptoms on different diets, the scientists concluded gluten was not the issue for these patients. It appeared FODMAPS, which still would require a gluten-free diet to manage, were more likely to blame.
The Real Clear Science article is largely reasonable – except that the science writer appears to extrapolate from this one study that NCGS is not real. The Monash study doesn’t, in fact, say that. But all the same, a rash of headlines ensued. Here’s a sample: “Freeing the Gluten-Free,” “Gluten Sensitivity is Apparently BS,” “Gluten Sensitivity is All in Your Head.” Naturally, Twitter took to that angle like a duck to water.
What seems more the Monash study’s takeaway is the question of how many people actually have NCGS, FODMAPs sensitivity or something else. This is a new and challenging area of research. As interesting as the study was, it involved only 37 patients, and is hardly the last word. More research is being done, and we need to stay tuned, give the scientists time to do their work and not rush to judgment.
But to return to the broader issue of portrayal in society, I think communication about the food restricted conditions is so vitally important. We must challenge those who report with careless negativity.
I, for one, am optimistic that such messaging can and will change. Perhaps that’s because I can remember the resistance to shifting away from pejorative terms like “handicapped”; too politically correct, it was said. Yet, what right-thinking person uses that word today? It takes consistent work to make change and effect tolerance.
That’s why I’m heartened to see high-profile people with food allergies and celiac disease coming forward to tell their stories and help the cause. People listen when those like actress Jennifer Esposito and TV nanny Jo Frost step up and say, “this happened to me, it can happen to you or your child.” The message begins to sink in.
What we need for medical conditions requiring special diets is respect. With the effort of all of us combined, I believe it can and will happen.