Coeliac 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 coeliac disease and ulcerative colitis, may cause confusion as to what coeliac disease is and how to recognise it. Below are some coeliac disease myths and facts explained.
MYTH: Coeliac is an allergy.
FACT: Coeliac 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 coeliac 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, coeliac causes the body to attack itself every time a person with the disease eats gluten.
MYTH: Coeliac disease is the same thing as having a gluten sensitivity.
FACT: Coeliac disease is different from having a gluten sensitivity because intestinal damage (which happens in people with coeliac disease) does not occur in people who are only sensitive to gluten. People with gluten sensitivity will also test negative for coeliac disease antibodies. It’s easy to confuse the two conditions because the symptoms for coeliac disease and gluten sensitivity may be similar, and avoiding gluten in food may also make people with gluten sensitivity feel better too.
MYTH: Coeliac is a disease that affects only children.
Fact: Although coeliac 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, diarrhoea and an itchy skin rash called dermatitis herpetiformis. Children may also experience delayed growth, short stature, delayed puberty, failure to thrive, neurologic issues, or behavioural issues. In adults, additional symptoms may include infertility, iron-deficiency anaemia, 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 coeliac 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 coeliac disease, you do not have coeliac disease.
FACT: Symptoms of coeliac 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 coeliac disease. In fact, coeliac disease experts recommend family member testing as a proactive approach to diagnosis. Most doctors who treat coeliac 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 coeliac 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 coeliac disease gene.
MYTH: There is no way to diagnose coeliac disease.
FACT: The most common way to diagnose coeliac disease is with blood tests that screen for coeliac disease antibodies. The test most often used is called the tTG-IgA. Note, however, that some people with negative blood tests can still have coeliac. If test results suggest coeliac 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: Coeliac is not a serious disease.
FACT: Coeliac 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, coeliac disease can trigger other conditions such as thyroid disease, osteoporosis, infertility, autoimmune diseases, cancer and lymphoma.
MYTH: Coeliac is pretty rare; not too many people have the disease.
FACT: Coeliac disease is estimated to affect at least 1 in 100 people worldwide, and it is estimated that only 10-20% of Australian and New Zealanders with coeliac 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: Coeliac goes away in time or resolves on its own.
FACT: There is no cure for coeliac 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).
Food Standards Australia New Zealand, the bi-national Government agency, has mandated that up to 20 ppm of gluten can be safely tolerated by people with coeliac disease. 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, eating carefully is important for those with coeliac disease.
MYTH: People with coeliac 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 coeliac 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 coeliac 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.
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