Given the explosion of gluten-free foods in grocery stores, you might think we were in the midst of an epidemic of gluten intolerance. After all, retail sales of gluten-free foods in the U.S. increased by 34 percent annually between 2010 and 2015, and there isn’t an endpoint in sight, according to a recent report from Packaged Facts, a market research publisher. But misconceptions about what it means to be gluten-intolerant are rampant, and some people are diagnosing themselves with celiac disease, which isn’t as it should be, experts say.
In honor of Celiac Awareness Month, it’s time to get to the bottom of who’s at risk and why. Here are five myths about celiac disease with the truths behind them.
By contrast, gluten sensitivity (aka gluten intolerance) is not an autoimmune disorder, nor does it have a genetic component. “With gluten sensitivity, a person may be able to tolerate small amounts of gluten without experiencing symptoms and [the problem] may not be for life,” Fasano explains. “Celiac disease is for life – you cannot grow out of this – so you need to stay 100 percent gluten-free. With celiac disease, the immune system will respond the same way to a crumb and a loaf of bread.”
It’s true that GI symptoms – such as abdominal pain, bloating and diarrhea – figure prominently but “with celiac disease, any organ can be targeted,” Fasano says. “What happens in the gut doesn’t stay in the gut – celiac is a systemic disease. Once gluten comes through, the immune cells can be programmed to leave the gastrointestinal tract and can start to fight against the body.”
This can lead to other symptoms such as fatigue, anemia, headaches, joint pain, weight loss and skin rashes, as well as irregular periods, infertility and pregnancy complications (such asmiscarriage or preterm delivery). Plus, autoimmune diseases often travel together, so celiac disease is often accompanied by Type 1 diabetes or an autoimmune thyroid disorder. In fact, a 2016 study from the University of Padua in Italy found that children with celiac disease were 2½ times more likely to develop Type 1 diabetes and 4½ times more likely to develop autoimmune thyroid disease, compared to their celiac-free peers.
Left untreated, celiac disease increases a person’s risk of developing thyroid disorders, severe infections, certain kinds of cardiovascular disease, neurological problems such as numbness and tingling in the hands and feet, or osteoporosis. A 2015 study from Brazil involving 101 patients with celiac disease found that 69 percent of them had low bone mineral density – either osteopenia or osteoporosis – at the time of their celiac diagnosis.
“The most feared complication of celiac disease is cancer – there’s an increased risk of non-Hodgkin’s lymphoma, which is a cancer of white blood cells, and lymphomas and adenocarcinomas in the small intestine,” notes Dr. Daniel Leffler, an associate professor of medicine and research director for the Celiac Center at Beth Israel Deaconess Medical Centerin Boston. That’s why it’s essential to get a proper diagnosis.
In people who don’t have symptoms but have a first-degree relative with celiac disease, genetic testing can be done to look for HLA DQ2 or HLA DQ8, the genes for celiac disease, through a blood test or a cheek swab. “If you don’t have the gene, you don’t ever have to worry about getting celiac disease,” Leffler says. If the results of all of these tests are negative and you suspect you’re sensitive to gluten, it’s worth trying a gluten-free diet to see if your symptoms improve; if they do, it likely means you’re gluten-sensitive.
Complicating matters, a third condition, an allergy to gluten (or wheat) is triggered by an immune response that’s usually mediated by allergic antibodies, or IgE, to one or more proteins in a particular food. So if you develop itching or swelling in the mouth, hives or a rash on your skin, nasal congestion, headache or itchy, watery eyes or other allergy-like symptoms within minutes or hours after consuming wheat or other gluten-containing foods, allergy testing with skin-prick tests or blood tests may be recommended.
There’s no such thing as a cure for it. But people with celiac disease should eliminate gluten from their diet for the rest of their lives to prevent symptoms and long-term complications. If you have celiac disease, it’s essential to read food labels very carefully because gluten is often in surprising items (like salad dressings).
“Certain things are naturally gluten-free so you don’t need to pay double or triple the price for gluten-free eggs, milk, fruits or vegetables,” Mullin says. “Sometimes there are laughable exploitations in the gluten-free market.”
As for gluten-free cosmetics, keep in mind that gluten must be ingested to trigger a reaction with celiac disease. So while it’s worth looking for gluten-free lipstick or toothpaste, you don’t have to worry about whether it’s in other forms of makeup, moisturizers or hair-care products.