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Hilary Jericho, MD
Jericho is a pediatric gastroenterologist at the University of Chicago Medical Center who specializes in the treatment of celiac disease.
Benjamin Lebwohl, MD, MS
Lebwohl is a gastroenterologist and Louis and Gloria Flanzer Scholar, Columbia University Medical Center, and director of clinical research at the Celiac Disease Center at Columbia University, both in New York City.
Julie Stefanski, MEd, RDN, CSSD, LDN, CDE, FAND
Stefanski is a registered dietitian for Stefanski Nutrition Services in York, Pennsylvania, and a spokesperson for the Academy of Nutrition and Dietetics.
Guy A. Weiss, MD
Weiss practices general gastroenterology, with particular focus on gluten-associated disorders. He is director of the UCLA Celiac Disease Program and an assistant professor of medicine in the division of digestive diseases at David Geffen School of Medicine at UCLA. He is also the editor of “Diagnosis and Management of Gluten-Associated Disorders: A Clinical Casebook,” published by Springer.
Gluten intolerance symptoms checklist
These are symptoms of possible gluten intolerance:
NEXT:Could something else be causing your symptoms?
Could something else be causing your symptoms?
Technically speaking, you could have a problem specifically with wheat – such as a wheat allergy – but not specifically with gluten, which is found in other foods that don’t contain wheat, such as barley and rye. There’s even debate among clinicians and researchers about whether or not the umbrella term non-celiac gluten sensitivity (used to broadly describe what’s believed to be a sensitivity to gluten when a person doesn’t have celiac disease) should be reframed – and renamed – to wheat intolerance syndrome or other alternatives.
If you are allergic to wheat, symptoms such as hives, itchy or red eyes, swelling in the mouth, abdominal issues or difficulty breathing tend to appear more rapidly and should be treated with antihistamines, epinephrine and/or a visit to the doctor.
But however it’s couched, there’s general agreement that patients need to take time to talk with their health professionals to really hone in on what’s causing their symptoms, instead of just taking matters into their own hands and making drastic dietary changes.
Is gluten really the culprit?
Celiac disease is a condition in which consuming gluten, the protein found in wheat, barley and rye, can lead to damage in the small intestine. For those with celiac disease, symptoms can vary. These can include intestinal issues such as abdominal pain, bloating, diarrhea, unintentional weight loss, iron deficiency, nausea and vomiting, says Dr. Benjamin Lebwohl, an associate professor of medicine and epidemiology at the Columbia University Irving Medical Center in New York City
That’s in addition to other problems ranging from joint pain to cognitive symptoms – often described as brain fog – numbness and tingling in the extremities, fatigue, mood changes and various rashes.
People with non-celiac gluten sensitivity, or NCGS, may experience similar symptoms when consuming gluten. Typically, however, those symptoms don’t include weight loss or nutritional deficiencies because these are associated with malabsorption from intestinal damage seen only with actual celiac disease.
Because of this wide range of symptoms, experts say people frequently blame gluten for what they’re experiencing when it may not be that at all.
Could something else be causing your symptoms?
Technically speaking, you could have a problem specifically with wheat – such as a wheat allergy – but not specifically with gluten, which is found in other foods that don’t contain wheat, such as barley and rye. There’s even debate among clinicians and researchers about whether or not the umbrella term non-celiac gluten sensitivity (used to broadly describe what’s believed to be a sensitivity to gluten when a person doesn’t have celiac disease) should be reframed – and renamed – to wheat intolerance syndrome or other alternatives.
If you are allergic to wheat, symptoms such as hives, itchy or red eyes, swelling in the mouth, abdominal issues or difficulty breathing tend to appear more rapidly and should be treated with antihistamines, epinephrine and/or a visit to the doctor.
But however it’s couched, there’s general agreement that patients need to take time to talk with their health professionals to really hone in on what’s causing their symptoms, instead of just taking matters into their own hands and making drastic dietary changes.
Celiac disease vs. NCGS
Certain tests can help differentiate celiac disease from look-alike conditions.
“Celiac disease is an autoimmune condition, affecting about 1% of the population, in which the immune system is triggered in response to gluten exposure, leading to gut inflammation,” explains Dr. Guy A. Weiss, director of the UCLA Celiac Disease Program and an assistant professor of medicine in the division of digestive diseases at David Geffen School of Medicine at UCLA. “Diagnosis is based on blood tests showing high celiac-associated antibodies and typical biopsy findings from the small bowel.”
With non-celiac gluten sensitivity, the diagnosis is less clear-cut. “NCGS is not a well-understood syndrome,” says Weiss, who is the editor of “Diagnosis and Management of Gluten-Associated Disorders: A Clinical Casebook.” NCGS, which affects an estimated 2% to 3% of people, “is diagnosed clinically after excluding celiac disease and wheat allergy, in those with symptoms that are associated only with gluten exposure,” he says. “People with NCGS do not have the above-mentioned abnormal laboratory or biopsy findings.”
Cases of mistaken identity
Going gluten-free without the guidance of a registered dietitian nutritionist can have unintended health consequences.
Research led by Lebwohl, published in May 2017 in the journal BMJ, notes avoiding dietary gluten may result in reduced consumption of whole grains, which could increase cardiovascular disease risk. What’s more, previous research Lebwohl was involved with found that many different alternative diagnoses were made for 25 of 84 patients studied who didn’t have celiac disease but had reported gluten was making them ill.
“The take-home from that study is that just because a patient is making a connection (between) gluten and symptoms does not automatically mean that that patient has non-celiac gluten sensitivity,” Lebwohl says.
Another food intolerance
One of the alternate diagnoses made for some patients who originally thought they had a gluten sensitivity is another food intolerance.
That could include lactose intolerance – in which a person has difficulty digesting the sugar found in dairy – and fructose intolerance. Fructose is a type of sugar found naturally in fruits, fruit juices, some vegetables and honey.
Julie Stefanski, a registered dietitian nutritionist in York, Pennsylvania, and a spokesperson for the Academy of Nutrition and Dietetics, points out that fructose intolerance produces similar symptoms to gluten intolerance. For example, “fructose intolerance can cause gas, bloating and diarrhea,” she says. But it’s caused by high amounts of fructose in things like juice or candy. That includes high-fructose corn syrup found in many processed foods and drinks.
Part of the confusion surrounding these intolerances is that people often co-ingest wheat with other foods, such as dairy or sugar. For instance, pizza, pasta with cheese or cream sauces and lattes with pastries or desserts are common pairings. Experts suggest consulting with a dietitian instead of trying to do the food sleuthing yourself.
Added fiber, artificial sugars and alcohol
There’s no shortage of things you might consume that could cause gastrointestinal symptoms for which gluten is commonly scapegoated. That includes everything from large amounts of inulin (chicory root), a type of fiber, to additives used to replace sugar – like sorbitol, maltitol and lactitol – found in protein bars and other things like ice cream products, which are also often poorly digested, Stefanski says.
She adds that fried or high-fat fare can lead to digestive issues sometimes blamed on gluten, as can failing to imbibe in moderation. “Alcohol itself can lead to diarrhea with overconsumption,” Stefanski says. “While some individuals do react worse to beer, which is made from barley and contains gluten, sometimes gluten isn’t to blame.” Wine – which typically doesn’t contain gluten – can cause these problems as well.
Gastroparesis
The National Institute of Diabetes and Digestive and Kidney Diseases notes diabetes is the most common known cause of gastroparesis, also known as delayed gastric emptying, in which food stays in the stomach longer than it should. This can result in some symptoms similar to those experienced by a person with gluten sensitivity.
But people who don’t have diabetes can also have gastroparesis. “Our stomachs contract and empty food at a specific rate,” and in people with delayed gastric emptying, that rate is slow, Lebwohl says. “When food just sits in the stomach and doesn’t leave, patients can feel bloated and nauseous and quite uncomfortable.” Medications and dietary changes – “principally a low-fat, low-fiber diet,” he notes – can increase the rate at which a person’s stomach empties and make a person feel better.