Misconceptions About the Gluten-Free Diet

This quote from a professor at the Albert Einstein College of Medicine sums up the reason myths persist in the face of evidence.

“Let’s face it,” he said. “Myths and misinformation so are so much more seductive than the truth.”

It seems the whole continent is interested in whether you can lose weight on the gluten-free diet. Others are arguing that gluten is bad for everyone, that there is more gluten in modern wheat and that “regular” wheat has been replaced by a genetically modified version.

As these topics started to draw mainstream media attention, the gluten-free diet also started to draw sarcasm at best and sneering at worst. Here’s a look at some of the myths about the gluten-free diet.

Weight loss

Our readers probably know better than most that the gluten-free diet is not a weight loss plan. It was never conceived as one. A gluten-free diet is designed to prevent those who have celiac disease and gluten sensitivity from suffering the harmful effects that gluten from wheat, barley and rye causes in their bodies.

Undiagnosed celiac disease can cause weight loss and the gluten-free diet, by restoring the body’s ability to absorb nutrients from food, can cause weight gain. Celiac disease patients who had always been slim prior to diagnosis but did not suffer dramatic weight loss, find that they, too, gain weight when they go gluten free. Sometimes it’s hard to slow that weight gain down, and so it’s not always welcome.

Meanwhile we contend with celebrities, friends, family and even strangers who are convinced that gluten free is the latest South Beach or Atkins diet, the quickest, surest way to drop pounds.  When we asked our website visitors about the myths that bother them the most, the one about weight loss was at the top of the list. About 50 percent said it was the most troubling of three choices. 

Can you lose weight on a gluten-free diet? Certainly. If you eat gluten-free foods that are high in nutrients and low in fat and calories in small enough quantities and you exercise enough to burn off more calories than you put in, then you can lose weight on the gluten-free diet.

But the absence of gluten alone should not be given credit for the weight loss. If you don’t have celiac disease or gluten sensitivity, you can also lose weight if you follow this kind of eating plan with no regard for gluten whatsoever. Maybe some people get a boost in motivation or reinforcement of their commitment to stay away from high-calorie foods like bread, cookies, cakes, pizza, pasta and more if they put themselves on a gluten-free diet.

But if they substitute gluten-free versions of these foods, we all know weight loss is not in their future, and vitamin and mineral deficiencies will be if they are not careful about what they eat.

A gluten-free diet that relies on fresh, natural foods such as  fruits and vegetables, lean protein and gluten-free whole grains and limits  processed foods is healthy and should be the goal of everyone who is gluten free. But if you do not have celiac or gluten sensitivity, you can achieve these same goals without having to be gluten free.

Is gluten evil for all?

The idea that gluten is bad for everyone is another popular myth. This idea has gotten a lot of traction from the books Wheat Belly and Grain Brain: The Surprising Truth about Wheat, Carbs, and Sugar—Your Brain’s Silent Killers. But experts who have been researching celiac disease and gluten sensitivity for years dispute this notion.

In his book Gluten Freedom, Alessio Fasano, M.D., head of the Center for Celiac Research and Treatment at MassGeneral Hospital for Children in Boston, wrote that celiac disease research led him to take a close look at the way gluten protein is handled in our digestive system. He found that gluten is the only protein that can’t be completely dismantled. As undigested protein sits in the small intestine, our bodies unleash an immune response similar to the one triggered by bacteria. Fasano says this happens in everyone, not just those who have celiac disease or other gluten disorders.

But he writes that it’s a mistake to interpret this fact as proof that gluten is toxic to everyone, and he laments that his discoveries have played a part in the popular myth that everyone has to be on a gluten-free diet.

He says the body wins daily battles with bacteria and does the same with gluten. “Only a minority of us will lose this battle. These are the genetically susceptible individuals who will develop gluten-related disorders,” Fasano says.

Stefano Guandalini, M.D., founder and medical director of the University of Chicago Celiac Disease Center, agrees, noting that the undigested protein pieces are simply eliminated by most people and are not the cause for concern.

For most people, gluten is neither bad nor good. Those who choose the diet because they find it makes them feel better or because a family member has celiac disease or gluten sensitivity and they want their home to be a gluten-free zone, can do so without harm as long they make healthy food choices. Done right the gluten-free diet won’t hurt you. But this choice should be made based on facts, not myths.

The need for testing

Another worry is that when people think gluten is bad for everyone, they go on the gluten-free diet without being tested for celiac disease. Celiac disease experts strongly advise everyone to be tested first. In particular testing should be a priority for anyone who has symptoms of celiac disease or has a family member who has celiac disease. And it’s a good idea even if you don’t have any symptoms because we now know that some people show no outward signs of celiac disease even if damage is being done internally. 

Once you are on the gluten-free diet, it’s very difficult to tell if you have celiac disease because tests won’t pick up antibodies unless you are eating gluten. A celiac disease diagnosis matters to you personally because it can motivate you  to stick to the gluten-free diet.

It matters to the celiac disease community at large because we are trying to decrease the number of undiagnosed cases. Right now about 85 percent of those who have celiac disease don’t know it. Some are undiagnosed because they don’t have symptoms. For others, their symptoms have led to diagnosis of the wrong disease.

If we can start nudging up the percentage of diagnosed celiac disease cases, we won’t have to worry that when the gluten-free fad fades , celiac disease and gluten sensitivity will be forgotten again.

More gluten in wheat?

You might also have heard that the reason celiac disease and gluten sensitivity are increasing is that there is more gluten in modern wheat. I’m not sure where that story got started, but I do know where it ends.

Donald Kasarda, Ph.D., a respected cereal chemist who retired from the U.S. Department of Agriculture (USDA), decided to research whether today’s wheat really does contain more gluten than wheat from the early 1900s. He compared data and found that average gluten content is the same range, roughly 10 to 15 percent.

At the International Celiac Disease Symposium in 2013, Kasarda also reported facts about wheat-based foods consumed by Americans. His data refuted claims that one of the reasons we have more problems with wheat is its growing presence in food. Kasarda found that the amount of wheat eaten per person per year peaked at 220 pounds in 1900 and stood at 134 pounds in 2008.

And although GMOs, genetically modified ingredients, do affect some of the ingredients used in gluten-free foods like corn, genetically modified wheat has not made its way into the food supply so that’s not to blame for an increase in celiac disease or gluten sensitivity either.

How myths impact your life

But what real impact do these myths have on your gluten-free life? Why should you care about them as much as you might about myths such as the one that there is gluten in coffee?  

When the general public believes incorrect information about gluten and the gluten-free diet, it causes confusion and lack of serious regard for the very real needs of someone who has celiac disease or gluten sensitivity.

I read a quote that sums up the dangers well: “Fad and fantasy trivialize and endanger the medically necessary side of the gluten-free diet.”

Take this scenario: A diner who has gone gluten free to lose weight goes to a restaurant and tells his server he can’t have croutons on his salad. Then, pleased with his restraint during dinner, he gives into the temptation have a few bites of gluten-filled cake for dessert. This creates the impression that the gluten-free diet is nonsensical and that those who follow it don’t need to be taken seriously.

Then when you go to the same restaurant seeking a truly gluten-free meal and ask about cross-contamination, there’s a real risk your concerns won’t be addressed.

A lot of people have worked for a very long time and in minute detail to make the restaurant industry understand the gluten-free needs of those who have celiac disease. And that work, which is far from complete, can be quickly undone by a string of diners who think of the gluten-free diet as something you can veer on and off of depending on whim and will power.

Those on the gluten-free diet are often depicted as whiny, self-absorbed, self-important and generally annoying. It’s a popular mainstream image, but when it comes to those with celiac disease, it is about as accurate as a Photoshopped celebrity picture.

Plain and simple, the gluten-free diet is medicine, for now the only one available to those who really suffer the consequences of consuming wheat, barley or rye. Many follow the diet with a low profile and have subtle ways of making sure the food they eat is safe. When they eat out, they are gracious customers who are known to leave generous tips in return for caring service.     

Is gluten sensitivity real?

Most stories about the gluten-free diet do acknowledge the seriousness of celiac disease, but gluten sensitivity gets pushed around by media bullies. Doubt dogs gluten sensitivity because there is no definitive way to diagnose the condition and many people decide for themselves that they are gluten sensitive.

Not long ago even medical experts thought gluten sensitivity was a myth. Doctors who tested symptomatic people for celiac disease and got negative results from blood tests and biopsies either didn’t believe anything was really wrong with the patient or diagnosed them with another condition or series of other conditions.

Researchers finally took another look at gluten sensitivity in response to outcry from patients who struggled with symptoms until they went on a gluten-free diet even without a celiac disease diagnosis. As a result the condition was officially recognized as a legitimate gluten-free disorder. The number of those who are thought to have gluten sensitivity exceeds even estimates of those who have undiagnosed celiac disease. Exciting work is going on to identify a way to definitely diagnose gluten sensitivity. It’s not here yet, but there’s a good chance it will be one day.

This article was originally published in the March/April 2015 issue of Gluten-Free Living.

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