5 Myths About Celiac Disease
By Stacey Colino | Contributor
May 18, 2016, at 10:03 a.m.
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.
Myth No. 1: Gluten sensitivity is the same thing as celiac disease.
Not so. Yes, they both involve reactions to gluten, a protein found in wheat, rye, barley and other foods and beverages that contain these grains. And it's true that they often cause similar gastrointestinal, or GI, symptoms. But celiac disease (aka celiac sprue), which affects about 1 percent of the U.S. population, is an autoimmune disease, in which the consumption of gluten damages the villi (small hair-like structures) in the small intestine and interferes with the absorption of nutrients from food. "People are born with a gene for celiac disease, then eating gluten triggers it," explains Dr. Alessio Fasano, director of the Center for Celiac Research and Treatment at Massachusetts General Hospital in Boston. "Some people can tolerate gluten for a while but then suddenly can't. You can develop celiac disease at any age. The microbiome, the ecosystem in the gut, may determine when these genes are turned on or off."
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."
Myth No. 2: Celiac disease affects only the gastrointestinal tract.
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 as miscarriage 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.
Myth No. 3: Despite its unpleasant symptoms, celiac disease isn't serious.
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 Center in Boston. That's why it's essential to get a proper diagnosis.
Myth No. 4: Everyone should be tested for celiac disease.
This is a controversial issue. "Without a clear picture [of telltale symptoms of celiac disease], it's hard to figure out who to test," Leffler says. But the test for celiac disease is pretty straightforward: A blood test for tissue transglutaminase, or tTG, antibodies is highly accurate for diagnosing celiac disease; if the result is positive, the gold standard for confirming the diagnosis is a biopsy of the lining of the small intestine to look for specific patterns of damage.
"There can be cases that are challenging where antibodies aren't showing or the biopsy is negative but the genetic tendency is present," says Dr. Gerard Mullin, an associate professor of medicine at Johns Hopkins University and author of "The Gut Balance Revolution." "Celiac disease is a diagnosis you don't want to miss because it may show up years later as a refractory illness or cancer."
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.
Myth No. 5: A gluten-free diet cures celiac disease.
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.
Even if you're able to steer clear of gluten entirely, which is no small feat, the chronic inflammation that occurs with celiac disease may not disappear right away if the disease isn't diagnosed and treated early enough, Leffler says. "The earlier you treat, the better the prognosis is. Treatment improves the risks substantially but not everyone's intestines heal fully." That's why it's important to see your doctor regularly for follow-up visits if you're diagnosed with celiac disease.
Stacey Colino ContributorStacey Colino is a freelance Health + Wellness reporter at U.S. News. You can connect with her on LinkedIn or email her at firstname.lastname@example.org.