Our author, Dr. Alessio Fasano, has been featured in an article from BBC News all about his background, experience, and point of view on celiac disease. Click HERE to check out the full article!
"What's wrong if indeed someone feels better going gluten-free, not because gluten harms them, but because they feel they are doing something that's going to benefit them?" -Dr Alessio Fasano, Director for the Center of Celiac Research
In February 2011, some of the world's leading researchers on coeliac disease met in a hotel near Heathrow Airport in London to discuss patients like Debra, who had many of the outward signs of coeliac disease but few of the inward ones. A report of this meeting, published in the journal BMC Medicine, proposed that doctors broaden their scope from just looking at coeliac disease, to a "spectrum of gluten-related" disorders, with coeliac and wheat allergy (which affects a tiny minority of people) at one end of the spectrum, and "non-coeliac gluten sensitivity" at the other.
The existence of gluten sensitivity remains disputed, but one of the men in the room in 2011, Dr Alessio Fasano, director for the Center of Celiac Research in the US, is a believer. His open-minded attitude is a result of his remarkable experience treating coeliac disease in North America.
In 1993, he took up the post of director of paediatric gastroenterology at the University of the Maryland School of Medicine. He was a young doctor from Naples in Italy, where he had seen perhaps 20 or 30 children a week with coeliac disease.
It was a different story in the US. "The days, the weeks, the months passed by - and I did not see a single case of coeliac. Not a single case," he recalls. In 1996, Fasano published a paper in a paediatrics journal entitled Where have all the American coeliacs gone? The research, based on analysis of 2,000 blood samples that Fasano bought from the Red Cross, contended that there were just as many coeliacs in the US as there were in Europe, but because the disease was so narrowly defined in America, they were being misdiagnosed.
The reception from his peers was sceptical. So Fasano and his team launched a much larger epidemiological study of 13,000 people. This helped shift the estimated prevalence from one in 10,000 to one in 133. His clinic now treats more than 1,000 patients a year.
Unlike wheat allergy and coeliac disease, gluten sensitivity does not have a known set of biomarkers - doctors can't tell if a patient is suffering from it by examination (although there is a blood test, it doesn't give accurate results for many patients). So it can only be diagnosed by first ruling out other diseases and then trying out a gluten-free diet.
Although gluten has no nutritional value in itself, making a radical change to one's diet without the supervision of a dietitian is a bad idea, Fasano insists. "Going gluten-free deprives you of many key elements of the diet, like vitamins and fibres that need to be supplemented in order to maintain balanced nutrition," he says.
Part of the controversy surrounding gluten sensitivity stems from the fact that it is difficult to disentangle any benefits someone may experience by adopting a gluten-free diet from the placebo effect - the power of a patient's expectation that a treatment will lead to a cure.
A study published in February is the latest in a number of experiments with a "double blind" design, to sidestep the placebo effect. The Italian researchers tested 61 non-coeliac patients who believed they had gluten sensitivity, dividing them into groups that either received a daily dose of gluten or a rice starch placebo for a week, before swapping to the other treatment. Neither the patients nor the researchers knew until after the experiment who had been given the placebo first, and who the gluten first.
Many of the patients suffered symptoms including intestinal problems, foggy mind and depression while they were taking gluten, suggesting it really was the source of their problems.
The lack of physical biomarkers for gluten sensitivity also means that it is hard to know how many people are affected. Fasano's best guess, which he has arrived at by looking at patient records, is 6% - a much higher number than coeliac disease's 1%.
But with 29% of American adults trying to avoid gluten, that still leaves 22% - 53 million - who are not on the spectrum of gluten-related disorders, but who say they want to cut gluten from their diet. In 2013, 200 million gluten-free orders were made in restaurants, according to NPD.
"We've been scratching our heads to understand this social phenomenon," Fasano says. "We started this crusade, so to speak, to really make the North American community aware that coeliac disease existed. We didn't realise that this pendulum was going to go out of control and go all the way to the other side."
When I ask if adopting a gluten-free diet can help someone lose weight, Fasano laughs. "If you go on a gluten-free diet, taking substitutes like gluten-free beer, pasta, cookies and so on, if anything you gain weight. If you take a regular cookie, it's 70 calories. The same cookie, gluten-free, can go as high as 210 calories.
"You have to substitute gluten with something that makes that cookie palatable, so you have to load it with fat and sugars. Just consider that. A gram of protein is four calories, a gram of fat is nine."
But, he adds, it may be possible to lose weight on a gluten-free diet by choosing natural products like fresh fish, meat, vegetables and fruit.
|Launches of gluten-free snack bars|
|...as a % of all new snack bars|
Two best-selling books, Wheat Belly by William Davis, and Grain Brain by David Perlmutter, have been particularly influential in steering healthy Americans away from the "dangers" of wheat and gluten. Both books make frequent reference to Fasano's research, but he says they are full of exaggeration and generalisation ("Gluten and carbs are destroying your brain," reads the back of Perlmutter's book). Frustrated by the sensationalist coverage, Fasano published his own book last year, Gluten Freedom, written with Susie Flaherty.
He says that eating gluten poses no risk to people who fall outside the spectrum of gluten-related disorders - and most experts agree with him.