Is gluten really the culprit? For those with celiac disease — in which consuming gluten, the protein found in wheat, barley and rye, can lead to damage in the small intestine — or a so-called…
Is gluten really the culprit?
For those with celiac disease — in which consuming gluten, the protein found in wheat, barley and rye, can lead to damage in the small intestine — or a so-called non-celiac gluten sensitivity, the symptoms can be diverse. These can include intestinal issues such as abdominal pain, bloating, diarrhea, unintentional weight loss, nausea and vomiting, says Dr. Benjamin Lebwohl, an assistant professor of medicine and epidemiology at the Columbia University Irving Medical Center. 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. But because of the wide range of symptoms, experts say people frequently blame gluten for what they’re experiencing when it’s not that at all.
Could something else be causing your symptoms?
Technically speaking, you could have a problem with wheat — such as a wheat allergy or intolerance — but not specifically with gluten. There’s even debate among clinicians and researchers about whether the umbrella term non-celiac gluten sensitivity (used to broadly describe what’s believed to be a gluten sensitivity when a person doesn’t have celiac disease) should be reframed — and renamed — to wheat intolerance syndrome. But however it’s couched, there’s general agreement that patients need to take time with their health professionals to really home in on what’s causing their symptoms, instead of just taking matters into their own hands and making drastic dietary changes.
Cases of mistaken identity
Going gluten-free without the guidance of a registered dietitian nutritionist can have unintended health consequences. Research Lebwohl led published last year in the BMJ notes avoiding dietary gluten may result in reduced consumption of whole grains, which could increase cardiovascular risk. What’s more, previous research Lebwohl was involved in 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 thought they had a gluten sensitivity but didn’t is another food intolerance. That could include lactose intolerance — in which a person has difficulty digesting the sugar found in dairy — and fructose intolerance, which Julie Stefanski, a registered dietitian nutritionist in York, Pennsylvania, and a spokesperson for the Academy of Nutrition and Dietetics, points out produces similar symptoms. “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 food and drink products. Experts suggest consulting with a dietitian to sort it out instead of trying to do the food sleuthing yourself.
Other things you eat or drink — that aren’t gluten
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 synthetic fiber found in some fiber and protein bars and additives used to replace sugar — like sorbitol, maltitol and lactitol — similarly 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.
Too much bacteria growing in your small intestine
We have trillions of bacteria that call us home, and many take up residence in our intestines, helping maintain a healthy balance in the gut. In some cases, however, the bacteria in the middle or proximal part of the small intestine overgrow in quantity, causing what’s called small intestinal bacterial overgrowth, Lebwohl explains. “When that happens, it can interfere with the digestion of certain foods,” and ultimately that can lead to symptoms like gas and bloat, he says. “It can be diagnosed via a breath test that measures bacterial products in the breath, and it can be treated with antibiotics.”
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, which 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.
Irritable bowel syndrome
As with a non-celiac gluten sensitivity, there’s no test that can definitively diagnose irritable bowel syndrome, a disorder of the large intestine that causes symptoms such as abdominal pain, bloating and gas. But for those with symptoms, it’s worth exploring with a health provider if IBS could be an issue. (This may involve providing a health history, undergoing a physical exam and having some testing done, as necessary.) Some with IBS may benefit from a gluten-free diet. But an overlapping yet different approach, a low FODMAP diet (which stands for fermentable oligosaccharides, disaccharides, monosaccharides and polyols — complex carbs that are difficult to digest), is frequently advised to improve symptoms. “It has better evidence behind it than the gluten-free diet for treatment of irritable bowel syndrome,” Lebwohl says.
Other serious health concerns
The list of what might be misattributed to a gluten sensitivity is long, and some underlying problems that cause overlapping symptoms can be serious. “Certainly some patients who are depressed will have it manifest not just in mood but with physical symptoms,” Lebwohl points out. The mood disorder can affect appetite, cause headaches and lead to gastrointestinal symptoms like abdominal pain. Lebwohl recalls one patient who had started a gluten-free diet (but, as it turns out, didn’t have a gluten sensitivity) was found to be going into kidney failure, he says. Lebwohl declined to provide more particulars about that case, since they could identify the patient. But symptoms of kidney failure may include confusion, nausea and fatigue, which overlap with those caused by a gluten sensitivity.
Taking a closer look
Experts say those who suspect they may have celiac disease or non-celiac gluten sensitivity should see health providers who assess for these issues. “Wheat intolerance syndrome or non-celiac gluten sensitivity — whatever you want to call it — is what we call a diagnosis of exclusion,” says Dr. Hilary Jericho, a pediatric gastroenterologist at the University of Chicago Medical Center who specializes in the treatment of celiac disease. It’s not like you can test for it as you would a specific food allergy, for example. “It’s really a process of excluding most other things, and then you come back to that diagnosis,” she says. Still, with careful exploration, experts say, it’s frequently possible to uncover what’s at issue — gluten or not. “Oftentimes you can figure it out,” Jericho says.