Diagnosis or Neurosis? Eating Gluten-Free in a Skeptical World

by Jen Thompson, MPP

---

Lately I’ve felt defensive when ordering food at restaurants.  “Can you let me know if this has any gluten in it? I have celiac disease,” I’ll say while silently whispering to myself: please believe me. Over the past few years, those of us with celiac disease – a genetic disorder in which the gluten protein found in wheat, rye, and barley triggers a damaging autoimmune response – have found ourselves in an awkward spot.  There’s now greater awareness than ever before of what gluten is, which foods contain it, and why people diagnosed with celiac disease need to scrupulously avoid it.  Yet eating gluten-free has also become a fad, with many people avoiding wheat without receiving a formal diagnosis. Some people self-diagnose themselves with “gluten sensitivity”, or a wheat allergy, or simply insist that they feel better when they avoid gluten.  Unfortunately, this has led to skepticism over gluten-free diets in general.

In February of 2014, for example, the New York Times devoted its “Room for Debate” page to the question “Is Avoiding Gluten a Risky Fad or a Healthy Diet?”  The responses ranged from the positive “If It Helps People, Let Them Be” to the snarky “This Fad Too Shall Pass.”  A third commentator struck a middle way, concluding that “Before Going Gluten-Free, Make Sure It’s Necessary.”  He pointed out that – unlike for celiac disease and wheat allergy – there’s no clinical test for gluten sensitivity, meaning that patients diagnose themselves based on “feelings of bloating, bowel changes or mental fogginess after eating gluten.”  This, he concluded, “is certainly a set-up for pseudo-science.”

The clinical research on gluten sensitivity has been less than illuminating. In a small, double-blind randomized study of 34 patients self-diagnosed with gluten sensitivity, Gibson et al found that 68% of participants who received a diet containing gluten reported worsened symptoms, compared to 40% of participants who received a gluten-free placebo.  Gibson and colleagues then performed a follow-up study, also double-blind and randomized, in which patients were first fed a diet low in fermentable, poorly absorbed, short-chain carbohydrates (otherwise abbreviated as FODMAPS. Read more on FODMAPS here.) The patients then received diets containing high, low, or no gluten.  In that study, all patients reported improved symptoms on the low-FODMAP diet, but only 8% reported worse symptoms after consuming gluten. The follow-up study prompted one science writer at PBS to proclaim “Unless You Have Celiac Disease, Gluten Sensitivity is Probably Just in Your Head.” But then again, maybe not: when commenting on a third study, in which a third of “gluten sensitive” patients reported worsened symptoms after consuming gluten, Dr. Gibson concluded “the controversy rages on.”  Other recent studies have found evidence both for and against the existence of gluten sensitivity.

So what is the average eater to do? It’s worth noting that for most people, a gluten-free diet may offer few benefits. Processed gluten-free foods are almost always more expensive than their glutinous counterparts, and may actually contain fewer nutrients and more calories, sugar and fat.  Personally, as someone entering her second decade with celiac disease; if you still want to try the gluten-free route, be serious.   Don’t ask for a gluten-free entrée in a restaurant, then complain when the waiter doesn’t offer you bread.  That sort of cavalier approach isn’t likely to do much for your health or your waistline, and it only makes things harder for those of us who can’t eat it at all.