Non-Celiac Gluten Sensitivity: Is It A Thing?

Non-Celiac Gluten Sensitivity: Is It A Thing?Non-Celiac Gluten Sensitivity (or intolerance) is a sensitivity to gluten that cannot be explained by either celiac disease or a wheat allergy. Gluten sensitivity is what doctors call it when going off all products with gluten lessens symptoms. Those who believe they have gluten intolerance talk about feeling bloated and gassy and having other signs of tummy distress, for instance, diarrhea, stomach pain and cramps. While the web is alive with people talking about non-celiac gluten sensitivity, and it’s the fashion for people to go on gluten-free diets, many experts believe the condition doesn’t really exist.

Lots of people swear that going off gluten makes them feel better. It’s not that doctors don’t believe their claims, it’s that they think that the improvement in symptoms has nothing to do with eliminating gluten from the diet. The symptoms may have been caused by a different food substance (and not gluten). Or, the symptoms may be caused by a different condition or disease. Finally, some people with non-celiac gluten sensitivity who go on a gluten-free diet will experience a placebo effect. They believe that the diet is going to make them feel better, and this powerful idea actually does reduce their very real symptoms.

Marketers have figured out that non-celiac gluten sensitivity is a popular idea and have used the idea to make money. Magazines and websites offer gluten-free diets (some of which are not actually gluten-free), and food products that never contained gluten in the first place now proudly sport labels which say “gluten-free.” People who go on these diets and buy these foods will insist they feel better and they probably do for any of the reasons mentioned above: placebo effect, different food substance as culprit, other disease or condition.

A true, celiac disease gluten sensitivity is a real disease that hits fewer than 1% of the U.S. population. Celiac is an autoimmune disease in which eating gluten makes the body attack its own tissues. Celiac can thus be said to be an allergy to the proteins in gluten. Gluten is found in such grains as wheat, barley, and rye.

Celiac disease can be diagnosed with physical findings: blood tests plus a biopsy of tissue from the small intestine. Celiac is incurable and there is no treatment except for going off all gluten, forever. The very vast majority (99%) of those who claim to have a gluten sensitivity, however, test negative for celiac.

How can this discrepancy be explained? How can it be that so many people claiming they have a non-celiac gluten sensitivity, really do not? Can 99% of these people be faking illness?

Non-Celiac Gluten Sensitivity: The Placebo Effect

The answer goes back to the placebo effect. The placebo effect is stronger in the case of subjective symptoms or symptoms that are reported by the patient, but that cannot be confirmed by a doctor’s examination or through medical tests. Experts think that the placebo effect is at work in anywhere from 20%-40% of patients who go off gluten believing they have non-celiac gluten sensitivity.

Unfortunately, the placebo effect does not last indefinitely. Most people who believe they have non-celiac gluten sensitivity, go off gluten, and then feel better, eventually find their symptoms come back. Others may feel somewhat better on the gluten-free diet, but their tummy symptoms don’t really go away. That could be due to the fact that their symptoms are due not to gluten, but to some other factor.

It could be, for instance, that the person who believes he has non-celiac gluten sensitivity has irritable bowel syndrome or irritable bowel disease. There are all sorts of conditions and diseases that upset the tummy and cause symptoms such as are seen with celiac. It could also be that foods that have gluten in them, also contain some other food substance or substances that are making these non-celiac sufferers suffer. Tummy issues, in general, have the same symptoms as food intolerances or allergies. That’s why it’s a good idea for someone with symptoms of bloating, gas, diarrhea, and abdominal pain to see a gastroenterologist (a stomach doctor).

Could non-celiac gluten sensitivity be (in reality) allergies? Why, yes it could. Which is why, after excluding diseases and conditions that affect the intestines, the next step should be to consult an allergist for testing. The downside of this idea is that allergy testing for food allergies is not very precise. The best way to diagnose a food allergy is to eliminate foods from the diet and see how the patient responds. Do his symptoms disappear when he stops eating milk products? He probably has some sort of intolerance to dairy products.

Of course, with any elimination diet, you run into our old friend, the placebo effect.Sugars

In talking about food allergies that might cause the symptoms of “non-celiac gluten sensitivity,” we have to look at something else known to cause tummy symptoms. That something else would be FODMAPs (fermentable oligo-, di-, and mono-saccharides and polyols). FODMAPs are the food sugars and their related molecules that are found in the fruits and vegetables we eat.

Most people have heard of fructose. Fructose is a good example of a FODMAP. Fructose is taken from plants and used as a sweetener for many commercial foods. But some people just can’t digest fructose very well. When they eat foods sweetened with fructose, the sugar goes through the small intestine straight into the colon at which point the colon breaks the fructose down, turning into gas and other products that cause—you guessed it—tummy trouble.

Plant-Based Sweeteners

Diet Sweetener
Diet sweeteners usually contain FODMAPs dcwcreations / Shutterstock.com

The way this process happens is similar to what happens in lactose intolerance. Lactose is a milk sugar that many people can’t digest or absorb. But FODMAP intolerance is an up and coming star because as people try to eat a more healthy diet, they increase the number of fruits and vegetables they eat, never realizing that in trying to improve their diet, they are making themselves literally sick to their stomachs.  Not to mention that people are avoiding sugar and opting for various sweeteners made from (wait for it) plants. These plant-based sweeteners are, of course, FODMAPS. As for any other food intolerance, cutting out FODMAPs from the diet, improves symptoms.

In addition to FODMAPs, there’s a tummy condition to consider that can cause the symptoms seen in non-celiac “gluten” sensitivity and this is bacterial overgrowth of the small intestine. In this condition, bacteria usually found only in the colon, find their way to the small intestine. These bacteria mix with the food in the small intestine before it can be digested. This reaction between bacteria and food and especially with sugars and carbohydrates, causes the same gas and other byproducts normally found only in the colon. That means that you’ve got gas in the small intestine and gas in the colon, too. In other words, excess gas.

Now, the gluten-free diet is naturally low in carbohydrates, so going on a gluten-free diet is going to improve the symptoms of someone who has bacterial overgrowth but not because of going off gluten, but because of eating fewer CARBOHYDRATES. And just imagine the person who not only has a FODMAP intolerance, but ALSO has bacterial overgrowth of the gut: of course he’s going to feel better on a gluten-free diet. Not to mention that FODMAP intolerance can be caused by bacterial overgrowth (for instance).

Carbohydrates that are high in sugar are called "high-glycemic foods."
Carbohydrates that are high in sugar are called “high-glycemic foods.”

Last but not least we come to what are known as functional intestinal disorders. These are disorders that don’t offer any positive test results or anything a doctor can see in an exam. Experts assume these  glitches in the workings of the intestines are due to some sort of dysfunction of the brain, muscles, nerves, and stomach secretions. Irritable bowel syndrome (IBS) is the prime example of a functional intestinal disorder. Doctors who see patients for non-celiac gluten sensitivity often find that their patients were diagnosed in the past as having IBS.

For years doctors debated whether non-celiac gluten sensitivity was a real thing. It’s not so easy to study the effects of diet changes and which substances cause which symptoms. But one small study did at last offer scientific proof that non-celiac gluten sensitivity is a myth. In that study were 37 study participants who said they had gluten sensitivity but were in good shape because of their gluten-free diets.

These patients were put on diets that were both gluten-free and low in FODMAPS. After some time, the group was divided into two groups. In addition to continuing the same diet, one group received pure gluten, and the other a gluten placebo. None of the patients developed symptoms. That’s because, in the end, none of these patients was gluten sensitive to begin with.

So what WAS going on here? Why did these patients experience symptoms and then feel better on the gluten-free diet?

Non-Celiac Gluten Sensitivity: Placebo Or FODMAPs?

Well, it could have been the placebo effect. Or it could have been FODMAPs that were causing the problem. A gluten-free diet  can be naturally low in FODMAPs, so going on a gluten-free diet meant consuming fewer FODMAPs. Going forward, clearly the direction of research into non-celiac gluten sensitivity should include studies on FODMAP intolerance.

In the end, in any patient suspected of having gluten intolerance, testing should be done for celiac. If there’s no celiac, the patient should be tested for allergies and gastric disorders. If everything looks okay in terms of physical findings, there’s nothing wrong with trying a gluten-free diet and if it helps, so that’s great. There’s no reason not to continue for as long as the diet helps. You could also try a diet that is low in FODMAPs and if that’s helpful, stick with it.

 

 

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About Varda Epstein

Varda Meyers Epstein serves as editor in chief of Kars4Kids Parenting. A native of Pittsburgh, Pennsylvania, Varda is the mother of 12 children and is also a grandmother of 12. Her work has been published in The Washington Post, The Huffington Post, The Learning Site, The eLearning Site, and Internet4Classrooms.