For years, the truth surrounding celiac disease has been grainy. Founder and medical director of the Celiac Disease Center at the University of Chicago, Stefano Guandalini, MD, clears up the top 10 myths about the disease.
Celiac disease is an autoimmune disorder. For people who suffer from this disease, ingesting gluten – a protein found in wheat, rye and barley – can severely affect the digestive process of the small intestine. Although about 3 million Americans have celiac disease, there are a lot of misconceptions about the condition — and not just among the public. People with celiac disease and even people within the medical community can sometimes be misinformed about the prevalence, symptoms and management of the disorder.
Stefano Guandalini, MD, Founder and Medical Director of the Celiac Disease Center at the University of Chicago, is one of the leading experts who is trying to set the record straight about celiac disease. Dr. Guandalini, who is also a professor and chief of Pediatric Gastroenterology at the University of Chicago, identified what he sees as the most common myths about – and the truth behind – celiac disease.
There is only one treatment option for celiac disease: A strict gluten-free diet.
Myth: Celiac disease is rare
Celiac disease affects one in every 100 people in the United States. It’s the most common inherited autoimmune disorder, and is far more common than diseases you probably hear more about, like type I diabetes or cystic fibrosis.
Because celiac disease can be mistaken for so many other conditions, it can take a while to diagnosis. For example, a child with celiac disease will visit up to eight pediatricians before the correct diagnosis is made. The vast majority of people living with celiac actually haven’t been diagnosed – about 85 percent of people with celiac disease don’t know they have it!
Myth: For the most part, only children develop celiac disease
Celiac disease can strike at any point in a person’s life and affects Americans of all ages. Dr. Guandalini explains that while the onset mechanism of celiac disease is still in part unclear, he and his team at the Celiac Disease Center “believe a stress to the immune system in the presence of gluten triggers the disease active in predisposed individuals.” Some people can eat gluten for decades with no problem and then develop celiac disease. Others are diagnosed as children.
An autoimmune disease is when the immune system attacks the body’s own tissues as if it is a foreign substance.
Myth: Celiac disease is just another way of saying wheat allergy or gluten sensitivity
Celiac disease is an autoimmune disease – much like diabetes or rheumatoid arthritis. When someone has an allergy or sensitivity, the immune system interprets a foreign substance as a threat and attacks it. This response is typically strong enough that it produces symptoms, which we would consider an allergic reaction. An autoimmune disease, however, is when the immune system attacks the body’s own tissues as if it is a foreign substance. When a person has celiac disease and eats gluten, his or her immune system responds by attacking the small intestine. This prevents the body from absorbing important nutrients.
Myth: It’s possible to outgrow celiac disease
While people can outgrow food allergies, celiac disease is an autoimmune disorder and a lifelong condition – people do not outgrow it.
Myth: The symptoms of celiac disease are always gastrointestinal
Symptoms vary from person to person and even between children and adults. While digestive symptoms are common in children, adults often have symptoms that are not gastrointestinal, like iron deficiency, fatigue, joint pain or a skin rash called dermatitis herpetiformis. Dr. Guandalini says that in addition “research shows that two out of three people with active celiac disease have minimal or no symptoms at all,” though they may still be at risk for all of the serious complications of celiac disease.
“Two out of three people with active celiac disease have minimal or no symptoms at all.”
Myth: If I’m diagnosed with celiac disease, I can still eat gluten if I don’t have any symptoms
There is only one treatment option for celiac disease: A strict gluten-free diet. Even a small amount of gluten can trigger the disease and cause internal damage, says Dr. Guandalini. “It is important to note that this is an autoimmune disease; ingestion of gluten triggers a host of reactions that are detrimental in the long-term, even if symptoms are not seen immediately.”
Myth: Gluten is in everything, so a gluten-free diet is incredibly limiting
Gluten is a dietary protein found only in wheat, barley and rye. Though most processed foods have gluten, there are many foods that are naturally gluten-free. As long as they’re not processed, fruits, vegetables, dairy products, fish and seafood, meat and meat alternatives are all naturally gluten-free.
“40 percent of the general population carries the gene or genes necessary to develop celiac disease…but only five percent of that group – or about one percent of the general population – ever develops it.”
Myth: The best way you can tell if you have celiac disease is a screening
Screening is only the first step. Screening consists of genetic tests, which show whether or not someone has the required genes, and antibody tests, which show if you have elevated antibodies.
According to Dr. Guandalini, “40 percent of the general population carries the gene or genes necessary to develop celiac disease at some point in their lives, but only five percent of that group – or about one percent of the general population – ever develops [it].”
Furthermore, while a high level of antibodies may indicate celiac disease, it is not decisive. A biopsy is the only way to diagnose celiac disease with complete certainty.
Myth: Since there’s no cure for celiac disease, it’s not important to diagnose it right away
Undiagnosed and untreated celiac disease can lead to the development of other autoimmune disorders, as well as osteoporosis, infertility, neurological conditions and, in rare cases, cancer.
Myth: If I think I have celiac disease, I can find out by not eating gluten
In order to be diagnosed with celiac disease, you have to have a reaction to gluten, which you can’t have if you’re not eating any gluten. Dr. Guandalini explains, “Once you remove gluten, the diagnosis becomes virtually impossible.”
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