Many people try a gluten-free diet in hopes of finding relief from bloating, abdominal pain, acid reflux or symptoms of irritable bowel syndrome. What most people don’t know is that sensitivities to gluten can manifest in numerous ways other than gastrointestinal (GI) discomforts. The GI tract is gluten’s point of contact in the body, but symptoms can manifest elsewhere because the disease is systemic.

Gluten sensitivity can also show up as inflammation in the skin, joints, brain or respiratory tract. Common extraintestinal symptoms of gluten sensitivity include anemia, behavior resembling attention deficit and hyperactivity disorder, body aches, brain fog, depression, dermatitis herpetiformis, eczema, fatigue, headaches, irritability and even numbness or tingling in the arms or hands.

Celiac Disease vs. Non-Celiac Gluten Sensitivity

Symptoms of non-celiac gluten sensitivity (NCGS), a rather new medical term, can be much the same as symptoms of celiac disease. One of the defining differences between the two is that people with gluten sensitivity do not test positive for celiac disease or wheat allergies. As researchers note in a 2010 article published in the International Archives of Allergy and Immunology, numerous studies have concluded that celiac disease and gluten sensitivity are different clinical entities, marked by unique immune responses.

Celiac disease is an adaptive immune response in which the body learns to recognize a particular substance as harmful and tags it so that at any subsequent time it encounters the offender, it knows to attack. When the immune system starts attacking its own normal tissue (which, in the case of celiac disease, is the intestinal tissue), it becomes an autoimmune condition.

When gluten is eaten by someone with celiac disease, the body’s immune reaction damages the mucosal lining of the intestinal tract. This creates inflammation, as well as flattening of the villi; small, hair-like projections that comprise the intestinal wall and play a critical role in the absorption of digested nutrients. This makes people with celiac disease prone to develop nutrient deficiencies that put them at risk for anemia, osteoporosis, infertility and weight loss.

In a study published in BMC Medicine, researchers determined that in NCGS, conversely, an innate (non-specific) immune response to foreign invaders occurs quickly and without tagging for later identification. NCGS is not a food allergy or autoimmune condition, although it does create an inflammatory response in reaction to gluten. People with NCGS do not have the intestinal damage to the villi that is present in celiac disease, and extraintestinal symptoms tend to outweigh gastrointestinal symptoms.

Prevalence

Now a rather commonly known genetic disorder, celiac disease has been diagnosed in more than 2 million, or about 1 in 133, people, notes Dr. Alessio Fasano, the director of the Center for Celiac Research and Treatment at Massachusetts General Hospital for Children. His findings, published in a 2003 article in the Archives of Internal Medicine further reveal that the incidence of celiac disease for people with a first-degree relative (parent, sibling or child) diagnosed with celiac disease can be as common as one in 22 people. Fasano also states that NCGS may affect far more people than celiac disease, with estimates of about 7 percent of the U.S. population, or roughly 20 million Americans).

The Trouble with Diagnosis

People often think that the symptoms they are experiencing must be attributed to an unrelated issue because celiac disease test results came back negative. However, just because someone does not have celiac disease does not mean that he or she does not have sensitivity to gluten.

Current tests may not be comprehensive enough to detect all gluten-related issues. For example, most lab tests only address one of the many types of antibodies, or immunoglobulins (Ig) produced in response to a perceived foreign invader, or antigen. Research published in The Journal of Immunology found that an immune response can be triggered by numerous peptides of gluten; however, blood tests typically check for antibodies to only one type. Other research discovered a high rate of false negatives with a tissue test because the intestinal damage caused by celiac disease was not advanced enough to elicit a positive diagnosis.

There currently are no blood tests or diagnostic biomarkers to diagnose NCGS. Most methods test for antibodies to gluten in the bloodstream, but antibodies will only be present in the blood when the gut has become so permeable that gluten is able to pass through, as occurs in advanced stages of celiac disease. With no single test that can conclusively diagnose a gluten-related disorder, currently, the best method to confirm NCGS, after test results for celiac disease or wheat allergy come back negative, is adherence to gluten-free diet that improves or alleviates symptoms, followed by a recurrence of symptoms when gluten is reintroduced.

“Going gluten-free,” then, may not necessarily be just a fad. This awareness is a great first step for people to begin thinking about the foods they eat and tuning in to how their choices affect their physical and mental health.

Jaclyn Downs is a board certified holistic health coach who works with individuals and groups and leads workshops on topics related to food and wellness. Connect at GetBalancedWellness.com.