Myths about Celiac Disease

MYTH: Celiac disease is rare in Canada.
FACT: Unfortunately, the diagnosis rate for celiac disease is increasing every year. In the most recent study, celiac disease was found to affect 1 in 100 people.

MYTH: Celiac disease is a disease of childhood.
FACT: Young adults, middle-aged adults, and senior citizens have all been surprised by a diagnosis of celiac disease.

MYTH: Celiac disease can be outgrown.
FACT: Celiac disease is a lifelong condition. Although it is possible for celiacs who are in remission after dietary treatment to take gluten without immediate obvious harm, we know that intestinal mucosal damage recurs and, with time, severe clinical symptoms can develop.

MYTH: Celiac disease is easily diagnosed.
FACT: It is more likely to be missed. The disease is a great mimicker, and people may suffer constipation, abdominal pain, vomiting, or anemia rather than the classic textbook symptoms of diarrhea, weight loss (or failure to grow), and steatorrhea (fatty stools).

MYTH: Celiac disease can be diagnosed by a simple blood test.
FACT: Currently, the only way to reliably test for celiac disease is to do an intestinal biopsy while the patient is still taking gluten. At best, blood tests are only screening tests. At worst, they can be misleading.

MYTH: An intestinal biopsy is a serious surgical procedure requiring general anesthesia.
FACT: Relax. Performed by a skilled physician, a biopsy is a safe procedure with minimal discomfort, tolerated without general anesthetic even by infants.

MYTH: A trial gluten free diet is a good way for your doctor to find out if you need a biopsy.
FACT: Watch out! A gluten free diet trial before intestinal biopsy can seriously jeopardize or prolong the time it will take for you to get a definitive diagnosis. This is because the diagnostic intestinal mucosal lesions may improve as a result of the diet, and may remain non-diagnostic for prolonged periods, even after reintroducing gluten.

MYTH: A person with celiac disease can tolerate a small amount of dietary gluten once in a while.
FACT: It’s best to stay away from gluten completely. You might be able to get away with gluten occasionally in that you will appear well, but serious damage to the intestinal villi can occur even with small amounts of gluten.

MYTH: The only dietary advice needed by a celiac is to avoid wheat and wheat products.
FACT: Effective treatment of celiac disease requires strict exclusion of gluten from the diet for life. Many foods unexpectedly contain gluten, and it’s not just in wheat but in rye, barley, oats, and triticale, and any parts thereof. Expert dietary instruction is essential so that you can avoid all sources of gluten and yet maintain a balanced and nutritious diet.

MYTH: Celiac disease and dermatitis herpetiformis are unrelated.
FACT: People with dermatitis herpetiformis can present with obvious signs and symptoms of celiac disease, or be asymptomatic but have a positive intestinal biopsy. Treatment with a gluten free diet helps control the dermatitis herpetiformis rash.

MYTH: If diagnosed and on a gluten free diet, the celiac is cured and will not need further medical or dietary supervision.
FACT: Some medical problems, such as iron deficiency anemia, may remain and need treatment. It is not yet clear whether late complications such as malignancy may occur, even after dietary treatment. Continued dietary advice and support are also essential to help you cope with changing formulations of prepared foods.