Celiac Disease and Gluten Allergies: Separating the Wheat-related Illness from the Fad

The Fashionable Demonology of Gluten…

A recent article in The New York Times on “gluten allergies” – as distinct from Celiac Disease – is an interesting reminder of the way health-fashionistas can propel a powerful food fad by driving a bandwagon fueled by scant data. Just a decade ago, few people had heard the word “celiac,” and only bakers talked about gluten. Today, many shun gluten in pursuit of vague, putative health improvements, inspired by celebrities and diet missionaries who set fashion trends of all types. People are forever looking to find, and rout, the single dietary culprit that stands between them and general well-being. (If only one could so easily pinpoint the chief obstacle to health, happiness and a submissive GI tract!)

…And the Indisputable Gravity of Celiac Disease

Real or not, widespread claims of gluten allergy can look, to the unsympathetic eye, a little like Munchausen Syndrome. I would have viewed those claims as just a curious cultural trend, were it not for my professional interest in the “real deal” – Celiac Disease, informally known as celiac sprue. Celiac Disease (CeD) is an auto-immune response to gluten: at once insidious and debilitatingly symptomatic, persistent and shape-shifting, life-altering and potentially lethal. It often eludes diagnosis for years due to the astonishing variety of symptoms, from hallmark GI side effects (not always present) to diffuse neurological symptoms; from malnutrition, anemia, and osteoporosis to infertility and miscarriage. Longer-term effects include T-cell lymphoma, the sort of cancer that can spring from chronic immunologic insult. Epidemiological estimates place incidence at roughly 1%, but the condition remains significantly underdiagnosed, even though documented incidence has been rising steadily with the availability of tTG antibody testing, approved in the US a decade ago.

Emerging from the Shadows…

CeD is certainly not a new disease but the medical community has been largely disengaged because the only management is “a gluten-free diet” (GDF), which means there is little to be accomplished through systematic follow-up. Diseases amenable only to lifestyle modification put patients squarely at the controls. And because CeD patients are often highly symptomatic, they also tend to be highly motivated. Many are remarkably knowledgeable and self-directed, often more expert than their physicians. Pioneering celiac crusaders and disease advocacy groups [NFCA, CDF, and CSA] have helped make the world safer for these patients – medically and psychologically – by creating public awareness, increasing access to information, spurring diagnosis, and legitimizing what was for so long a very lonely, neglected affliction. There are some excellent CeD centers around the country but, by and large, physicians in the community are just catching up.

…and Now Catching the Eye of Pharma

Fortunately, the pharmaceutical industry has also begun to pay serious attention. A Baltimore-based company called Alba Therapeutics is partnering with Teva to develop larazotide acetate, an oral peptide that regulates tight junctions and modulates cellular permeability, reducing gluten leakage into the gut.

Alba is currently enrolling patients in its Phase IIb trial at 74 sites around the country. Larazotide acetate is not an immune-modulator; successful trials would position it as an adjunct to diet, significantly enhancing symptom control and, by implication, reducing long-term risk. These patients need an additional backstop because gluten lurks everywhere and, as we know so well from diabetes and other lifestyle-mediated diseases, self-control is a famously imperfect health strategy. Even most of the disciplined patients continue to be symptomatic.

Let’s Not Blur the Picture

This brings us back to the starting point – the probability that many people now on gluten-free diets have nothing at all wrong with them that gluten abstinence can cure, although some are CeD family members who adopt gluten-free diets in an act of solidarity. (The disease is genetic, so people with close family members who’ve received a diagnosis should be screened, even if they are not symptomatic.) Gluten sensitivity remains speculative, despite a tidbit of clinical data and some anecdotal testimony by health professionals. The question is: Does all the attention paid to this pop-culture “wannabe” ultimately help or hinder the process by which CeD, a documented and serious disease, achieves mainstream medical awareness?

One can argue the case both ways. The concept of gluten allergies has put gluten on the dietary map, as well as on most food labels. A flourishing specialized food industry, which has gotten added impetus from the GFD dietary fad, provides CeD patients convenient access to a much larger and tastier array of products. If the fad wanes, the food industry may lose some interest.

On the other hand, we don’t want our received wisdom on gluten and health to come from starlet interviews in Marie Claire. All this misdirection risks blurring the boundaries between “allergies” and true CeD in ways that discourage formal diagnosis and invite casual self-care. CeD patients will always need to be at the helm of their disease -- well-educated and well-motivated to combine serious diet with pharmacology. If ever there was a case for DTC outreach, this is certainly it.