How Many People Have Gluten Sensitivity?

Gluten sensitive refusal of bread

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It's generally accepted that one in 133 people have celiac disease, a genetic condition resulting in intestinal damage whenever they ingest gluten, a protein found in wheat, barley, and rye.

However, researchers only recently have identified non-celiac gluten sensitivity as a separate, distinct condition, and some in the medical field are waiting for confirmation of those still-new research findings before accepting gluten sensitivity as a possible diagnosis.

It's also possible that it isn't the gluten after all — instead, it may be something else in wheat and other gluten-containing grains that are causing some or all reactions for people who are "gluten"-sensitive.

Given all that, plus the fact that there's no accepted test for gluten sensitivity, it's impossible to say for sure how many people may actually be gluten-sensitive. Researchers have estimated it may be as low as 0.6% of the population (or six in every 1,000 people) or as high as 6% of the population (six in every 100 people), but there hasn't yet been any definitive research on the numbers.

However, three prominent researchers in the field — Dr. Alessio Fasano, Dr. Kenneth Fine, and Dr. Rodney Ford — recently spoke with me and speculated on what the percentages might be. Just note before you read on that the percentages they mention are based on their own (largely unpublished) research, and don't represent established medical opinion.

Dr. Fasano: Gluten Sensitivity May Affect 6% to 7% Overall

Dr. Fasano, director of the University of Maryland Center for Celiac Research, published the first study looking at the molecular basis for gluten sensitivity and how it differs from celiac disease. He also participated in the research concluding that celiac disease incidence is one in every 133 people.

According to Dr. Fasano, gluten sensitivity potentially affects far more people than celiac disease. He estimates about 6% to 7% of the U.S. population may be gluten-sensitive, meaning some 20 million people in the United States alone could have the condition.

Symptoms of gluten sensitivity in this population can include digestive problems, headaches, rashes, and eczema-like skin symptoms, brain fog and fatigue, Dr. Fasano says. Almost one-third of those he's diagnosed as gluten-sensitive report brain fog and headaches as symptoms, he says.

Percentage Could Be Far Higher — Up To 50%

Dr. Ford, a pediatrician in Christchurch, New Zealand and author of The Gluten Syndrome, says he believes the percentage of people who are gluten-sensitive actually could be much higher — potentially between 30% and 50%.

"There are so many people who are sick," he says. "At least 10% are gluten-sensitive, and it's probably more like 30%. I was sticking my neck out years ago when I said at least 10% of the population is gluten-sensitive. My medical colleagues were saying gluten sensitivity didn't exist. We'll probably find it's more than 50% when we finally settle on a number."

Dr. Fine, a gastroenterologist who founded and directs the gluten sensitivity testing service Enterolab, agrees that gluten sensitivity probably affects half the population.

Dr. Fine suspects that 10% to 15% of all Americans have blood antibodies (either AGA-IgA or AGA-IgG antibodies) to gluten, which would indicate their immune systems are reacting to the protein.

Another large percentage of Americans have autoimmune disorders, irritable bowel syndrome, chronic headaches and/or microscopic colitis, which place them at high risk for gluten sensitivity. About 60% to 65% of people with those conditions test positive for gluten sensitivity through Enterolab, Dr. Fine says.

Meanwhile, about 20% to 25% of people with no symptoms are diagnosed with gluten sensitivity based on Enterolab testing results, Dr. Fine says.

"When we did the math, we came up with the number of about one in two are gluten-sensitive," he says.

Meanwhile, Dr. Fine says he believes that the "one in 133" estimate for people who have celiac disease may be too high — "I think it's more like one in 200. I'm fully aware of the one in 133 study but that was an invited and somewhat biased selection." Other studies have placed the incidence of celiac disease at around one in 200 people to one in 250 people, and Dr. Fine says he thinks those are more accurate.

What Do These Gluten Sensitivity Numbers Mean?

At the moment, these potential percentages of people who may have gluten sensitivity represent pure speculation on the part of these physicians and researchers — the studies simply haven't been done to prove whether they're accurate or far-fetched.

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By Jane Anderson
Jane Anderson is a medical journalist and an expert in celiac disease, gluten sensitivity, and the gluten-free diet.