not again.

gluten-free sourdough

“Gluten sensitivity is bullshit!”

I stared at my email and sighed. Not again.

Long ago, I signed up for a Google alerts for the words gluten-free and celiac, so I can keep up with the latest news on scientific studies for those of us whose bodies cannot tolerate gluten. Each day, I see gluten-free blog posts and announcements of yet another gluten-free brownie mix. There are also fascinating medical journal articles on zonulin inhibitors and the latest theories on the gut microbiome. (I’m a bigger scientific geek than often spills onto this blank white space.) Those I prize. The endless spewing about the sudden interest in gluten-free food? That I wish I didn’t see.

As you might know, a couple of weeks ago, everyone in the press and on the internet was discussing a study out of Monash University in Australia. The title of the study? “No Effects of Gluten in Patients With Self-Reported Non-Celiac Gluten Sensitivity After Dietary Reduction of Fermentable, Poorly Absorbed, Short-Chain Carbohydrates.”

Now, I understand that’s a mouthful. Most people don’t know what fermentable, poorly absorbed, short-chain carbohydrates are. If you don’t know what they are, they’re commonly referred to as FODMAPs. For those of you who don’t know, FODMAPS stands for fermentable oligosaccharides, disaccharides, monosaccharides, and polyols. Now that’s really a mouthful. These short-chain carbohydrates, for reasons that are not entirely clear, ferment and digest poorly in the intestines of some people with irritable bowel disorder. Each person who has problems with FODMAPs seems to have a different set of foods that bother the gut, and it’s an intricate dance of eliminating high FODMAP foods and adding them back in, one at a time, to see what is tolerable. What kinds of foods are high in FODMAPs? Artichokes, onions, anything with lactose. Honey. Apples. Lentils. Pears. And wheat, rye, and barley.

Let’s just hold that in our minds. Wheat, rye, and barley are high in fructans, which are oligosaccharides, which cause pain, gas, bloating, distension, nausea, changes in bowel habits (such as diarrhea and constipation), and other intestinal disorders in some people.

As Roxanne Khamsi wrote in a measured piece about this in Scientific American“A final group of potential culprits belongs to a diverse family of carbohydrates such as fructans that are notorious for being difficult to digest. A failure to absorb these compounds into the blood may draw excess water into the digestive tract and agitate its resident bacteria. Because these resilient carbohydrates occur in all kinds of food—not just grains—a gluten-free or wheat-free diet will not necessarily solve anything if these molecules truly are to blame.”

So, in short, this study seemed to point clearly to the fact that some people who feel certain they are sensitive to the protein commonly known as gluten are actually sensitive to the carbohydrate in wheat, rye, and barley instead. Mind you, there were only 37 participants in the study, all of whom were suffering with irritable bowl syndrome. The scientists who conducted the study happen to work at the same university where FODMAPs were first named as a problem for people with intestinal issues, a university becoming famous for that work. And the study only looked for intestinal problems, not joint pain or headaches or depression, or any of the other myriad symptoms that can accompany gluten-related disorders.

However, it seems that the study was done to help people. Why are some people on a gluten-free diet still experiencing symptoms? If they’re not on the right diet, they need to find out what ails them. This could be great news for some people who suspect gluten doesn’t work for them but don’t know why. This could be a chance to help more people.

As the lead researcher on the study, Jessica Biesiekierski, stated, “We believe non-celiac gluten sensitivity probably does exist, but it’s not very common and we have a lot more to do until we fully understand [gluten].” As she and Peter Gibson, the co-lead researcher have stated, it seems that some people do not have gluten sensitivity but wheat sensitivity. Joseph Murray, the leading gastroenterologist specializing in celiac at the Mayo Clinic feels the same: “I’m starting to feel more uncomfortable calling it nonceliac gluten sensitivity. I think it might be better to call it nonceliac wheat sensitivity.”

In other words, this is an issue of semantics, in some part.

People who cannot tolerate wheat, rye, or barley because of the fructans still cannot eat wheat, rye, or barley.

It seems to me that these are the real implications of this study: people who have FODMAP problems still cannot eat wheat, rye, and barley, which are high in fructans. On top of that, they might also need to cut a dozen other foods out of their diet to find relief. As Biesierkierski wrote, “‘That means we really have to understand the differences between gluten sources and FODMAP sources,’ she says, ‘to help people figure out what’s upsetting their stomachs and how to avoid the triggers.’”

The story of this study should have been one of compassion, of complexity and nuance, about how hard it is to negotiate our own health in this world when we’re receiving so many mixed messages and the health care system is pretty woeful when it comes to anything related to food. It could have been an opportunity for news sources to teach, to reach people and communicate that they might not be taking care of themselves as well as they could.

Instead, there were headlines like this: “Unless You Have Celiac Disease, Gluten Sensitivty Is Probably In Your Head.” And that was from PBS Nova, folks.

The study was first published in Gastroenterology in May of 2013. Why did it suddenly go viral this May, which is Celiac Awareness Month? And it wasn’t just snarky internet sites that were using derogatory headlines. ABC News did a piece called The Doctor Who Started the Gluten-Free Fad Admits He Got It Wrong. Of course, in the piece, they identify the fructans these folks will have to avoid as wheat, rye, and barley. And yet, the coverage is glib and superficial, saying that those who are gluten-free are wrong.

This piece on NPR had a nuanced headline: “Sensitive to Gluten? A Carb in Wheat May Be the Real Culprit.” The New Yorker wrote a measured piece, called “Freeing the Gluten-Free.” In it, they quote Alessio Fasano, a leading celiac researcher from Massachusetts General, who was quoted as saying, “‘There is no question in my mind that it exists. Gluten is a very strange protein. We are not evolved to digest it.’ He regularly diagnoses patients with non-celiac gluten sensitivity, and he argues that the Gibson study was flawed because it only included people with IBS. People with NCGS often have other symptoms besides gut problems, he said, and limiting the study to IBS patients could have excluded patients whose main issue is gluten rather than FODMAPs. ‘They studied the wrong population,’ he said.

Even Gibson, the co-lead on the study, agrees. “Gibson says that he’s not trying to debunk non-celiac gluten sensitivity. He agrees with Fasano that it’s real, and that gluten may do much of its harm outside the gut. In April, he and his team published another study, with the same group of IBS patients, which found that eating gluten for three days had no effect on intestinal symptoms but did lead to increased symptoms of depression.”

This fascinating, intelligent Scientific American piece, written by someone who had been told to go on a gluten-free diet and improved, for the most part, is titled: “Gluten Sensitivity May be a Misnomer for Distinct Illnesses to Various Wheat Proteins.”

Why were the other articles, from other sources, not written with this much nuance? This isn’t a culture of nuance. This is a culture of 140 characters, quick fights, and making a deadline, fast. This is a culture of snottiness and righteousness. Writing a headline like “Gluten Sensitivity May be a Misnomer for Distinct Illnesses to Various Wheat Proteins” isn’t sexy. Writing “Gluten-Free is Bullshit” is snappy and snarky and gets the attention.

We live in a culture that goes for attention instead of attention to detail every time.