Nearly every restaurant and grocery store shelf brims with gluten-free options, as giving up gluten is no longer an emerging trend. But the growing popularity of gluten-free diets has led to confusion about what it means to have celiac disease, be gluten intolerant or gluten sensitive, or have a wheat allergy.
“There is a lot of literature that defines gluten-related disorders. The term basically encompasses conditions related to problems with ingesting gluten-containing foods,” says Rupa Mukherjee, MD, a gastroenterologist at Beth Israel Deaconess Medical Center, a Harvard Medical School Teaching Hospital in Boston.
Gluten — which is a binding protein — is commonly thought of in wheat-containing foods like bread, cereals, and baked goods, but it’s also in many other products, including soy sauce. (1)
What Is a Wheat Allergy? Understanding Its Causes, Symptoms, and Treatment
Wheat allergy is commonly conflated with having celiac disease or a gluten intolerance — and sometimes a “gluten allergy” (there’s no such thing!), but it’s completely different. (2) A wheat allergy is an adverse immunologic reaction to wheat protein, says Dr. Mukherjee. Meaning: Your immune system overreacts to wheat the way it might to seasonal allergy or another food allergy. Risk factors include a family history of allergies, asthma, or eczema. (2)
A wheat allergy will cause telltale symptoms of an allergic reaction like hives, sneezing, headaches, and in the worst case, life-threatening anaphylaxis. That said, nausea, diarrhea, and stomach discomfort are also common, and that can make distinguishing between wheat allergy and a gluten intolerance difficult. (2) An allergist can help uncover the right diagnosis. To treat it, you’ll avoid foods that contain wheat as well as foods that may be contaminated by wheat. (3)
What Is Celiac Disease? Exploring Possible Causes, Spotting the Signs, Getting a Diagnosis, and Finding Relief
One in 133 Americans (about 1 percent of the population) has celiac disease, an autoimmune condition. (4) That’s about 3 million people. When someone has celiac, they react to a group of proteins found in wheat, rye, barley, and spelt called gluten, explains Gerald Bertiger, MD, a gastroenterologist with Hillmont G.I. in Flourtown, Pennsylvania, who is also on the board of directors for the advocacy organization Beyond Celiac.
“The problem is that for reasons that are not completely understood, ingesting gluten makes the body see the intestine as foreign and attacks it with an inflammatory reaction,” he explains. (The body will produce certain antibodies in response.)
Dr. Bertiger adds that for most people with the condition, being entirely gluten-free would clear celiac disease symptoms completely, but there is still a small group of patients who are gluten-free but still have that inflammatory reaction and side effects. “Gluten isn’t 100 percent part of the story, but it’s a big part of the story,” he says.
How to Treat Celiac Disease With a Gluten-Free Diet and Supplements
Unfortunately, up to 83 percent of people with celiac disease are undiagnosed or misdiagnosed. (5) That’s largely because signs and symptoms can vary widely. “These fall into two categories, called GI and extra-GI,” says Mukherjee.
GI symptoms include chronic diarrhea or constipation, abdominal pain, bloating, and weight gain or loss. “Extra-GI” symptoms refer to those that are seemingly unrelated to your GI tract, like joint pain, difficulty concentrating, brain fog, fatigue, muscle cramps, unexplained anemia, and fertility issues in women, she notes. (6) One additional GI symptom is a rash called dermatitis herpetiformis; it looks like herpes and often appears on your butt and thighs (talk to your doctor to determine whether the rash is herpes or a sign of celiac).
It can be tough getting a diagnosis. “If a physician doesn’t suspect celiac, it can be years before a patient is diagnosed,” she says. (5)
These symptoms, along with a personal history of autoimmune disorders or a family history of celiac or autoimmune disorders, should tip off your physician that celiac may be a possibility, and you should be tested, she says. Testing is done through a tissue transglutaminase IgA antibody and IgA antibody test. (8) Stay on a regular diet while having the test done, because cutting gluten before testing can give you a false result.
If you’re diagnosed with celiac, the only treatment available right now is a strict gluten-free diet, which will allow your small intestine to heal, relieving symptoms and preventing nutritional deficiencies that can arise from problems absorbing food when you have the disease.
You’ll avoid the obvious things — like traditional bread, pasta, cookies, and crackers and other processed foods — as well as products that may also contain sneaky sources of gluten, such as nutritional supplements, communion wafers, and even certain cosmetics. (9)
Treatment means more than just feeling less bloated or clearer-headed. It’s a matter of long-term health. These common nutritional deficiencies associated with celiac (like iron, calcium, and vitamin D) put people with the disease at a greater risk for anemia, osteoporosis, infertility, and liver, gallbladder or pancreatic problems. (10) And because celiac is an inflammatory disease, people who go untreated also have an increased risk for certain kinds of cancer.
The bright side is that drugs are being developed to help relieve the gluten burden for people living with celiac disease. “There are at least five or six drugs with various pharmaceutical companies coming down the pipeline aimed at treating celiac disease. They’re all in different phases of trial,” says Bertiger.
While none offers a cure for celiac, he says, some may allow patients to eat some gluten, while others may be taken post-meal if you think you’ve eaten something contaminated. Approval of the drugs is further down the line, but it’s a step in the right direction. “Finally, the pharmaceutical industry is starting to look at celiac,” he says.
What Is Gluten Intolerance or Gluten Sensitivity? Understanding How They Differ From Other Gluten-Related Conditions
These two terms sound like they’re entirely different things, but actually they’re the same. “We call these non-celiac gluten sensitivity, or NCGS,” says Mukherjee. “These are patients who have neither celiac nor [a] wheat allergy,” she says.
Testing won’t show that you’re producing antibodies or have inflammation in your small intestine. Still, symptoms can be very similar to celiac — including bloating, gas, brain fog, abdominal pain, and changes in bowel movements, fluctuating from diarrhea to constipation, joint pain, muscle cramps, neuropathy — and they tend to improve when a patient stops eating gluten. Mukherjee adds that these symptoms are often very similar to what people with irritable bowel syndrome (IBS) experience.
That said, there’s no test to definitively diagnose someone with NCGS, says Mukherjee. If a patient receives a normal test result (no antibodies are present, a possible biopsy of the small intestine would be normal, and symptoms would go away without gluten and come back when eating it, a doctor may suspect NCGS. (11)
Still, it’s best to be upfront with your doctor to receive the most accurate diagnosis. “If you’re concerned about these symptoms, feel free to tell your physician, ‘I’m concerned about a gluten problem, can we do any testing you deem necessary?’” advises Mukherjee.
To control your symptoms, avoid gluten. But don’t go it alone. “Patients going gluten-free or on a modified low-gluten diet may run into nutrition problems, as many gluten-free foods are not fortified with necessary vitamins and minerals, like B vitamins and iron,” says Mukherjee. A registered dietitian can ensure you are getting the nutrients you need to function optimally. A dietitian can also help you reevaluate your sensitivity to gluten to see if you can introduce some amount of gluten-containing foods. Don’t have one? You can find one at EatRight.org, the Academy of Nutrition and Dietetics website.
If going gluten-free makes you feel better, speak with your healthcare provider or dietitian to determine whether you’re truly responding to the loss of gluten or if your response could be due to cutting down on high-FODMAP foods, which contain poorly digested sugars that can cause gut issues. There’s an overlap between FODMAP foods — including wheat — and gluten-containing foods.
Should Other People Eliminate Gluten From Their Diet, Too?
There’s a certain subset of the population who have eliminated gluten from their diets, not because of a specific symptom but because they label gluten as “bad for you.” The upside in this trend is that food brands and restaurants have listened and are now offering more gluten-free options. The downside is that the lay public may not take someone’s need to avoid gluten seriously, says Bertiger.
Restaurants may not be scrupulous with cross-contamination, for instance, because people who go gluten-free without celiac or NCGS won’t be bothered by a little gluten here or there — especially if they can’t see it. “Celiac patients can never eat gluten. When they do, it causes an inflammatory reaction that takes days or weeks to go away,” he says. For celiac patients, their health depends on going gluten-free, but there isn’t evidence that this is necessary for the general population.
It may even be harmful. One study looked at more than 100,000 men and women age 26 and older and found that eating gluten didn’t increase the risk of heart disease. But the researchers point out that gluten-free eaters may consciously avoid whole grains, which are associated with heart health. “The promotion of gluten-free diets among people without celiac disease should not be encouraged,” the authors write. (12)
Gut Healthy Foods Worth Trying — or Not
Another study noted “despite the health claims for gluten-free eating, there is no published experimental evidence to support such claims for the general population.” (13)
And even though people claim to follow a gluten-free diet for weight loss, there isn’t evidence that it does this for healthy folks who don’t have a problem with gluten, and it may even negatively affect gut bacteria, something that’s been linked to health and weight. Unless your doctor advises it, you don’t need to go gluten-free.
The Bottom Line on Gluten-Related Conditions and Going Gluten-Free
If you’re suffering from symptoms that you suspect may be gluten-related, continue your normal diet. Make an appointment with your doctor and outline your symptoms and discuss your family medical history. (It may be helpful to keep a running list of symptoms on your phone so you don’t forget any.) Ask if testing is appropriate. Then work with your doctor to devise a treatment plan that’s best for you.