Is Gluten Sensitivity a Real Condition?

When gastroenterologist Benjamin Lebwohl, MD, joined the Celiac Disease Center at Columbia University in 2010, he was prepared to encounter a few victims of gluten misinformation in the clinic. Awareness of celiac disease was rising, and gluten, the protein component of wheat, rye, and barley, was becoming, mistakenly, public enemy No. 1.  

But Lebwohl was surprised by the large number of people who came to the center on a gluten-free diet despite not having celiac disease. Some were victims of misinformation. Others were not.

“Most Americans on a gluten-free diet do not have celiac disease,” says Lebwohl. “Though within that group there are some whose symptoms appear to be truly caused by gluten. It’s a phenomenon called non-celiac gluten sensitivity and it’s been puzzling to physicians.”

Lebwohl, the center’s director of clinical research, has been working to study the puzzle, with the goal of developing tests and treatments,and get people the help they need.

We asked him about non-celiac gluten sensitivity and when, if ever, to avoid dietary gluten.

What is non-celiac gluten sensitivity?

There are more unknowns than knowns when it comes to non-celiac gluten sensitivity.

Celiac disease and gluten sensitivity can have similar symptoms—indigestion, intestinal bloating, and irregular bowel habits—typically within 24 hours of consumption of gluten.

We do know that in gluten sensitivity, gluten does not cause the intestinal damage we see in people with untreated celiac disease. And as far as we know, gluten sensitivity is not associated with other major health issues, such as cancer or fractures, like celiac disease is.

We think—based on recent Columbia research—that the immune system in people with gluten sensitivity is reacting to gluten in a way that’s different and more restrained than in celiac disease.

What should I do if I think I have gluten sensitivity?

It may be tempting to go on a gluten-free diet and leave it at that if your symptoms disappear, but it’s important to be tested for celiac disease and other potential causes of your symptoms.

If someone finds that gluten reduction or avoidance makes them feel better, they often ask, "Why bother testing for celiac disease if I’m going to be gluten free in the long term either way?"

It’s important because if you have celiac disease, doctors will know to monitor you for complications caused by celiac disease, including your bone deterioration; they’ll monitor the state of your intestines, to see that your diet is working; and they’ll suggest family screening so other relatives with undetected celiac disease can be diagnosed. 

If celiac disease is definitively ruled out, and your symptoms get better when avoiding gluten, we advise allowing symptoms to be the guide. People with celiac must avoid all gluten, but for people with gluten sensitivity, moderate intake may make sense. When we are confident the person does not have celiac disease, we are more liberal in what we advise because the focus really should be on the symptoms.

In any case, physicians and health care providers should be humble when encountering patients who avoid gluten for symptom relief. We don't have the answers yet. We should pay attention, consider their symptoms, and try to get to the bottom of what’s causing them to help them feel good.

How do you know gluten is causing sensitivity?

That is the crux of the matter. We do not know. There is no test. It’s a process of eliminating other possible culprits, like other foods.  

If a health care provider is offering easy answers or solutions, be wary. Gluten sensitivity tests, supplements, and diagnostics are all unproven.

Among the people who come to us and identify gluten as the culprit of their symptoms, only a few have gluten sensitivity. That’s similar to the results of several double-blind, placebo-controlled trials, which found that most people with apparent gluten-related symptoms do not feel worse when exposed to gluten as compared to placebo. But some do.

For the others, we need to rule out other explanations.

If it’s not gluten, what’s causing symptoms?

We've found an alternative diagnosis for one-third of self-diagnosed gluten sensitive patients, including food intolerances and other intestinal disorders.

About 15% to 20% of people have irritable bowel syndrome, a very common condition. The low FODMAP diet that many people with IBS follow has a fair amount of overlap with the gluten-free diet. Some people who avoid gluten might feel better because they have IBS and are inadvertently adhering to the appropriate treatment.

The best way to determine what is causing problems is to do an elimination diet: a short-term diet that is followed by a reintroduction phase where you try to identify components of FODMAPs (fermentable oligosaccharides, disaccharides, monosaccharides and polyols) that are serving as triggers.

Is a gluten-free diet a healthy diet?

A gluten-free diet is essential for people who have celiac disease. If you do not have celiac disease, or gluten sensitivity diagnosed by a physician, there is no proven health benefit to minimizing gluten intake or avoiding gluten.

Studies show that the gluten-free diet does not have health benefits for the majority of people and may be detrimental to health.

We’ve studied this at Columbia, following people and their diets and overall health for decades, and found that people who consumed a lot of gluten were not more or less likely to have heart disease. In that same study we also found that a gluten-free diet without careful management can result in a decline in consumption of whole grains, a less healthy diet that increases risk of heart attack. Further, eliminating gluten then going back to it can cause symptoms and create confusion in celiac testing.

A gluten-free diet is not an easy diet. It’s important to know whether it's necessary.