By Jennifer Iscol

A study on gluten sensitivity has been a hot topic in the media this month, with television news segments, an article on Forbes.com, a mention on NPR, and a spate of blog posts and other online articles. Media coverage has been dominated by inflammatory headlines describing gluten sensitivity as “not real,” “dumb” or “fake,” and hastily written, misleading articles attribute symptoms to psychological causes instead of physical ones.

However, some of the coverage has been reasonably balanced and at least attempts to address the actual findings. The study in question was by Peter Gibson, MD, and colleagues at Monash University in Australia, who studied 37 people with irritable bowel syndrome and found that symptoms attributed to non-celiac gluten sensitivity may be caused by food components other than gluten, including a group of short chain carbohydrates known by the acronym FODMAPs.

When the general public skims the articles or watches the news, however, the metamessage they take away may be that the gluten-free diet is a useless fad adopted by hipsters, hypocondriacs and high-maintenance whiners.

In the course of researching an unrelated article for our website this week, I called the national press office of a federal agency.  The press officer asked me the topic of my article.
“Gluten-free beer,” I responded.
“I thought there was no such thing,” he countered politely.
“No such thing as gluten-free beer?”
“No such thing as gluten-free. It’s been all over the news this week.”
“It’s a real thing to people with celiac disease, which is a life-threatening autoimmune disorder.”
“Are you calling from a beer magazine?”
“I’m calling from a nonprofit foundation on celiac disease.”
“So your position is that this is a real thing?”
“Yes, it’s a real thing.”

The press officer, friendly and conversational throughout this exchange, then connected me with the appropriate colleague to discuss my other article. However, I was stunned by the response of this random casual observer to press coverage of a small gluten sensitivity study.

If I had been prepared for this exchange, I would have defended people with non-celiac gluten sensitivity, in addition to those with celiac disease, explaining that their symptoms are indeed real and in response to food consumption. The scientific question is what components of the food are causing the symptoms, not whether the symptoms are real. In fact, the 2013 study was a follow-up to Peter Gibson’s 2011 double-blind randomized placebo-controlled study that first established evidence that symptoms associated with gluten sensitivity are real, regardless of what is causing them.

Popular media is enjoying this story, and gluten-free diet haters are jumping on the bandwagon. Finally, scientific proof that those annoying gluten-free dieters must be making it all up. The perfect story to read while downing a big slice of pizza.

Our board member, Amy Burkhart, MD, RD, elucidated the topic for us by placing the study in a larger context that helps explain its significance. “The media coverage is on a study published last year that found that FODMAP sugars may be the culprit in people being diagnosed with gluten sensitivity. It may be the carbohydrate component rather than the gluten component of the wheat that is causing symptoms. There are other components of wheat that may also be problematic. Perhaps gluten sensitivity will soon be given a new name as it doesn’t appear the gluten is always the issue.”

Dr. Burkhart emphasized, “This study is not addressing celiac disease. Celiac disease is an autoimmune reaction to gluten that has been well-documented for decades. The existence of celiac disease is not under debate. It is non-celiac gluten sensitivity that is under the microscope.”

Two previous articles by Dr. Burkhart help explain the issues: “Is Gluten Really the Culprit in Gluten Sensitivity?” and “Move Over Gluten-Free; Low FODMAP is Next.”

The authors of the gluten sensitivity study, Peter Gibson, Jessica Biesiekierski (now at University of Leuven in Belgium) and their colleagues, are advancing our medical knowledge in this new area of scientific inquiry. Last month they published a new study describing characteristics of adults self-diagnosed with gluten sensitivity. Dr. Burkhart addresses it in this month’s article on self-diagnosis.

The study authors have emphasized that much more research needs to be done to understand the causes of symptoms associated with gluten sensitivity. Given the crude, poorly informed media response to this series of studies on gluten sensitivity, perhaps in the next round (we hope there will be more research from this group) the authors may find a way to present the information to the public in a way that helps to hedge against misinterpretation.

To hear Peter Gibson summarize his findings and address how they might be useful to people currently diagnosed with non-celiac gluten sensitivity, listen to this podcast by the American Gastroenterological Association.