Celiac Disease

Diagnosis and Treatment of Gluten Sensitivity

An Overview of Gluten Sensitivity

Until recently, people who got negative results on the blood tests and intestinal biopsy used to diagnose celiac disease were told to eat whatever they wanted—gluten wasn't their problem.

However, many of those people tried the gluten-free diet anyway—a diet that eliminated every food that included the gluten grains wheat, barley, and rye—and reported they felt much better. Their symptoms (which included fatigue, digestive complaints, and neurological issues) cleared up when they ate gluten-free.

Many of these people felt they were sensitive or intolerant to the gluten protein, even though testing showed they didn't have celiac disease. In some cases, their doctors agreed with their assessments and agreed they shouldn't be eating gluten. In other cases, they simply continued to avoid gluten without a physician's blessing.

Now, many researchers (although not all) believe that such a condition involving a problem with those gluten grains (a problem that's not celiac disease) does exist.

They're calling it "gluten sensitivity," "non-celiac gluten sensitivity (NCGS)," "non-celiac wheat sensitivity," "gluten intolerance," or even "gluten allergy."

However, the condition's existence hasn't yet been proven definitively, and as of yet there's no explanation for why it occurs and how it might be related to celiac disease. There's not even a universally accepted name for it, although most of the experts in the field have coalesced around "non-celiac gluten sensitivity" or "non-celiac wheat sensitivity."

It's also not clear if it's the protein in wheat, barley, and rye that causes the symptoms of the condition.

In fact, researchers have identified other compounds in wheat, specifically, they say could be responsible. Some of these compounds, known as FODMAPS, are found in other foods, such as garlic and onions, as well as in wheat.

In addition, a study published in July 2016 indicates that the culprit in non-celiac gluten/wheat sensitivity may in fact be a leaky gut. The study, conducted by researchers at Columbia University Medical Center, found that those with wheat sensitivity had immune system markers indicating "systemic immune activation."

The results of the study suggest that this immune system activation occurs because microbes and food proteins are crossing the intestinal barrier into the blood stream, causing widespread inflammation.

Finally, despite a few recent studies showing gluten sensitivity may exist, many doctors don't yet agree that it's a real medical condition, and there's no accepted medical test for it. Research continues to seek the truth about wheat/gluten sensitivity, and as further results are awaited, your doctor may be more or less of a believer in the condition.

Symptoms of Gluten Sensitivity

The symptoms associated with gluten sensitivity sound remarkably like those associated with celiac disease: digestive problems, bloating, and fatigue.

Problems such as diarrhea, constipation, and abdominal pain occur frequently in those who have been diagnosed with gluten sensitivity. They're also common in those who report feeling ill from gluten-containing foods, but who don't have a diagnosis.

Joint pain, headaches, and brain fog are more frequently noted symptoms, and there's one small study that found gluten can cause depression in people who don't have celiac disease.

It's not clear whether these symptoms indicate actual damage to your body's systems, or whether they just show you've eaten something that doesn't agree with you. Some researchers say people who are gluten-sensitive actually can experience damage to other organs and systems, especially their neurological systems, but this hasn't been proven in scientific research.

Gluten Sensitivity vs. Celiac Disease

When you're diagnosed with celiac disease, it usually means you've met strict medical criteria—you have damage to your intestinal villi (known as villous atrophy) that was caused by an autoimmune reaction to gluten in your diet.

 Celiac disease affects approximately one in every 133 people in the U.S., making it a relatively common condition.

Most people who show symptoms of celiac disease don't have the condition, but some of these people do find relief from their symptoms on a gluten-free diet, and may, therefore, have gluten sensitivity.

Doctors need to rule out celiac disease before they can diagnose gluten sensitivity. This usually means you'll need to undergo celiac blood tests and then (possibly) an endoscopy, a procedure doctors use to look directly at your small intestine. If these tests don't show signs of celiac disease, then you and your doctor can consider alternative diagnoses, including gluten sensitivity.

Testing Options for Gluten Sensitivity Remain Unproven

Since many researchers do not agree that gluten sensitivity exists, there's no proven test to diagnose the condition. So what can you do to test for it if you think this might be your problem?

Once you and your doctor have ruled out celiac disease, you do have a few options for gluten sensitivity testing.

However, you should be well aware that none of those options have yet been validated by medical research.

For example, some physicians will use positive results on certain blood tests—tests that look directly for gluten antibodies in your blood—to help diagnose gluten sensitivity. A few others will diagnose you based on your response to the gluten-free diet—in other words, if you eliminate gluten and feel better, you're gluten-sensitive.

You also have the option of pursuing direct-to-consumer gluten sensitivity testing through EnteroLab—just be aware that the testing methodology used by this lab hasn't been proven or accepted by most physicians. 

Many Unanswered Questions on Gluten Sensitivity

It's possible that gluten sensitivity and celiac disease represent different aspects of the same condition, but it's more likely that they represent completely separate conditions. Since researchers don't yet agree on a definition for gluten sensitivity, we can't say for sure why it may occur and how it might relate to celiac disease.

In addition, it's likely that not everyone who avoids gluten needs to do so. If you drop gluten from your diet and feel better, you may be sensitive or intolerant to gluten. But there may be other explanations for your health turnaround.

For example, some people may feel better simply because they're eating a healthier diet—by cutting out gluten, you're also cutting out many forms of processed and junk foods. In fact, this is part of the reasoning behind popular "gluten-free cleanse" diets promoted by various celebrities, and may be the reason some people lose weight when they go gluten-free.

It's also possible that you feel better simply because you believe you're doing something positive for your health, i.e., feeling better on the gluten-free diet represents the placebo effect in action.

I don't say this lightly—in the past, too many doctors downplayed and dismissed potential symptoms from gluten, and the "it's all in your head" mantra still persists in parts of the medical community, despite advances in awareness. But it's true that some people who believe they can't tolerate gluten may be able to tolerate it just fine, as evidenced by the fact that some people who say they're gluten-sensitive can "cheat" on the diet without clear symptoms.

In fact, several studies have found that some people who believe they're gluten-sensitive don't react to pure gluten, or to gluten-containing grains, when they consume those substances in a blinded study. Others do react, though, which provides evidence that the condition does exist.

Gluten Sensitivity Treatment: The Gluten-Free Diet

As with celiac disease, the only current treatment for gluten sensitivity is the gluten-free diet.

There's quite a lot of debate over how strict that diet needs to be for someone who may "only" be gluten-sensitive. Some physicians will tell you to go ahead and cheat on occasion, while others will recommend a very strict gluten-free diet.

It's not clear whether following a gluten-free diet can provide you with health benefits beyond those you get from simply feeling better, or whether consuming gluten grains when you're sensitive entails health risks. As I said earlier, there's been little research indicating that you experience physical damage from gluten (no matter how unpleasant the symptoms you experience might be). But there's also been no research showing that you don't experience damage. This is an area that researchers are just beginning to explore.

As with everything involving gluten sensitivity, there are only a few studies that provide any insight, and some of the medical research to date has been contradictory. Eventually, scientists hope to provide more answers. In the meantime, if you're diagnosed with gluten sensitivity, you'll need to decide for yourself—in consultation with your doctor—how strictly to follow the gluten-free diet.

Sources:

Biesiekierski J et al. Gluten Causes Gastrointestinal Symptoms in Subjects Without Celiac Disease: A Double-Blind Randomized Placebo-Controlled Trial. American Journal of Gastroenterology. Published online Jan. 11, 2011. doi: 10.1038/ajg.2010.487.

Biesiekierski J et al. No effects of gluten in patients with self-reported non-celiac gluten sensitivity after dietary reduction of fermentable, poorly absorbed, short-chain carbohydrates. Gastroenterology. 2013 Aug;145(2):320-8.e1-3.

Elli L et al. Evidence for the Presence of Non-Celiac Gluten Sensitivity in Patients with Functional Gastrointestinal Symptoms: Results from a Multicenter Randomized Double-Blind Placebo-Controlled Gluten Challenge. Nutrients. 2016 Feb 8;8(2). pii: E84.

Fasano A et al. Divergence of gut permeability and mucosal immune gene expression in two gluten-associated conditions: celiac disease and gluten sensitivity. BMC Medicine 2011, 9:23. doi:10.1186/1741-7015-9-23.

Fasano A et al. Spectrum of gluten-related disorders: consensus on new nomenclature and classification. BMC Medicine. BMC Medicine 2012, 10:13 doi:10.1186/1741-7015-10-13. Published: 7 February 2012

Uhde M et al. Intestinal Cell Damage and Systemic Immune Activation in Individuals Reporting Sensitivity to Wheat in the Absence of Coeliac Disease. Gut. 2016. doi:10.1136/gutjnl-2016-311964.

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