Celiac disease shares many common intestinal symptoms with disorders such as inflammatory bowel disease (Crohn’s disease and ulcerative colitis). This overlap of symptoms, possibly due to a combination of genetics and environmental factors with celiac disease and ulcerative colitis, may cause confusion as to what celiac disease is and how to recognize it. Below are some celiac disease myths and facts explained.
MYTH: Celiac is an allergy.
FACT: Celiac disease is an autoimmune disorder (body’s immune system attacks healthy body tissue by mistake), not an allergy. It is often mistaken for an allergic illness because (like an allergy) it requires a foreign substance to trigger it. People with celiac disease who eat gluten may actually experience damage to their small intestine. When this damage occurs, the body may be unable to absorb nutrients from consumed food. Simply speaking, celiac causes the body to attack itself every time a person with the disease eats gluten.
MYTH: Celiac disease is the same thing as having a gluten sensitivity.
FACT: Celiac disease is different from having a gluten sensitivity because intestinal damage (which happens in people with celiac disease) does not occur in people who are only sensitive to gluten. People with gluten sensitivity will also test negative for celiac disease antibodies. It’s easy to confuse the two conditions because the symptoms for celiac disease and gluten sensitivity may be similar, and avoiding gluten in food may also make people with gluten sensitivity feel better too.
MYTH: Celiac is a disease that affects only children.
Fact: Although celiac disease is often thought of as a disease affecting children, it can develop at any age. Shared symptoms among children and adults include abdominal pain, diarrhea and an itchy skin rash called dermatitis herpetiformis. Children may also experience delayed growth, short stature, delayed puberty, failure to thrive, neurologic issues, or behavioral issues. In adults, additional symptoms may include infertility, iron-deficiency anemia, anxiety or depression, fatigue and bloating. If you or your child suffer from any of these symptoms, it’s important to see a doctor who treats celiac disease to find out if you have this condition.
MYTH: If you do not have the same symptoms as your family member or someone with celiac disease, you do not have celiac disease.
FACT: Symptoms of celiac disease may vary from one person to another, even among family members who suffer from it. It is not uncommon for one family member to have symptoms, while another to have no symptoms at all. First and second-degree relatives have an increased risk of developing celiac disease. In fact, celiac disease experts recommend family member testing as a proactive approach to diagnosis. Most physicians who treat celiac disease suggest that relatives get a blood test at the same time their family member is diagnosed and then every 2 to 3 years or anytime when new symptoms emerge.
Because celiac disease can develop at any age, it’s possible for a relative to have an initial negative test result, but then test positive years later. A genetic test can help to determine whether a person carries the celiac disease gene.
MYTH: There is no way to diagnose celiac disease.
FACT: The most common way to diagnose celiac disease is with blood tests that screen for celiac disease antibodies. The test most often used is called the tTG-IgA. Note, however, that some people with negative blood tests can still have celiac. If test results suggest celiac disease, your physician may recommend a biopsy of your small intestine to confirm the diagnosis. Additionally, as stated above, some people may also choose to be tested for the gene that is thought to cause the disease.
MYTH: Celiac is not a serious disease.
FACT: Celiac can be extremely debilitating due to symptoms as stomach pain, bone pain, fatigue, headaches, skin rash, and digestive issues. Gluten, a protein component of wheat, can actually interfere with the absorption of nutrients from food by damaging the part of the intestine called villi—this can lead to malnourishment. If left undiagnosed or untreated, celiac disease can trigger other conditions such as thyroid disease, osteoporosis, infertility, autoimmune diseases, cancer and lymphoma.
MYTH: Celiac is pretty rare; not too many people have the disease.
FACT: Celiac disease is estimated to affect at least 1 in 100 people worldwide, and it is estimated that only 10-15% of Americans with celiac disease have been diagnosed. Due to the challenging nature of the disease, patients may have symptoms for an average of 11 years before being diagnosed.
MYTH: Celiac goes away in time or resolves on its own.
FACT: There is no cure for celiac disease, and treatment involves following a strict gluten-free diet.
MYTH: It is possible to remove all gluten from food.
FACT: It is actually impossible to remove all gluten from food. The current method for gluten detection is by measuring gluten. Tests can measure the amount of gluten down to 3 to 5 parts per million (ppm), (a term to describe very small amounts of substances).
Most importantly, researchers agree that most people with celiac disease can safely tolerate up to 20 ppm of gluten. Even so, many food manufacturers are testing at even lower levels so their foods can be accessible to more sensitive individuals. The tiniest crumbs of bread can have over 20 ppm of gluten, so eating carefully is important for those with celiac disease.
MYTH: People with celiac disease can trust “gluten-free” restaurants and menu items.
FACT: Perhaps one day we will be able to sit down to a truly gluten-free meal, no questions asked. But until then, keep in mind that though food may be prepared with gluten-free ingredients, it is not necessarily safe for all people with celiac disease to eat. In fact, the gluten-free food is at times prepared in the same areas, pots and ovens where regular food or pizzas are cooked, and therefore may contain gluten. Be sure to ask the restaurant about the measures they take to ensure that their menu items are gluten-free.
MYTH: A gluten-free diet can be healthy for everyone, whether you have celiac disease or not.
FACT: A gluten-free diet could lead to vitamin and mineral deficiencies if not properly monitored by a physician or a nutritionist.
Dr. Fabio Cataldi was a Senior Director of Gastroenterology Pharmacotherapeutics Clinical Programs and Worldwide R&D at Pfizer Inc.