Celiac disease is a disorder of the digestive system and immune system that prevents the body from absorbing essential nutrients.
Beth Israel Deaconess Medical Center Celiac Disease Center medical director and professor Dr. “Our understanding and awareness of celiac disease has advanced over the past few decades, but there are still aspects that are poorly understood,” says Ciaran Kelly, MD, at Harvard Medical School.
Perhaps unsurprisingly, misconceptions are widespread among the general public. For example? Many people think that everyone with celiac disease suffers from abdominal pain, bloating, or diarrhea. In fact, many adults diagnosed with this hereditary gluten intolerance do not have these symptoms.
In addition, gluten—the sticky protein found in grains such as wheat, barley, and rye—can cause gastrointestinal discomfort and other symptoms in people without celiac disease.
Myth #1: Celiac disease is usually diagnosed at a young age
Usually not. Although celiac disease can appear any time after a baby’s first exposure to gluten, it is usually diagnosed later. According to the American National Celiac Disease Association, the average age of diagnosis is between 46 and 56. About 25% of people are diagnosed after the age of 60.
Celiac disease is slightly more common in women and in people with other autoimmune diseases, including type 1 diabetes, Hashimoto’s thyroiditis (a common cause of low thyroid levels), and dermatitis herpetiformis (a rare condition characterized by an itchy, blistering rash).
“We don’t know why some people are really predisposed to celiac disease,” says Dr. Kelly. The prevailing theory is that physical or emotional stress, such as stress from a viral infection, surgery, or a stressful life event, can at some point “turn the switch” and trigger the disease.
“More and more people are being diagnosed in middle age and older, often after they are diagnosed with conditions such as nutritional deficiency anemia or osteoporosis,” says Dr. Kelly.
Myth #2: Celiac disease only affects the intestine
When people have celiac disease, eating gluten triggers an immune system attack that can destroy the lining of the small intestine. A healthy small intestine is lined with ring-shaped projections called villi that absorb nutrients. In celiac disease, the immune system attacks the villi so that they cannot absorb nutrients properly.
Although gastrointestinal problems may occur, these problems are not always present. In fact, celiac disease can present with many different symptoms that affect the nervous, endocrine, and skeletal systems. Some examples are brain fog, menstrual changes, or muscle and joint pain.
Myth #3: Celiac disease and gluten intolerance
If you feel sick after eating gluten, you probably have celiac disease, right? In fact, this may not be true. Some people have a non-cellular sensitivity to gluten (also called gluten intolerance), which can cause unpleasant digestive symptoms after eating gluten. But gluten intolerance is different from celiac disease.
Celiac disease is diagnosed with blood tests that look for specific antibodies. If antibodies are present, a definitive diagnosis requires an intestinal biopsy to look for signs of damage that characterize the condition.
Non-celiac gluten sensitivity does not trigger antibodies or cause intestinal damage. However, some people with this problem report experiencing brain fog, difficulty concentrating, muscle aches, and fatigue after eating foods that contain gluten.
“Noncellular gluten sensitivity appears to be a real phenomenon, but it is not well defined,” says Dr. Kelly. It’s not clear whether people who develop it have an intolerance to gluten or something else in gluten-containing foods.
Myth #4: A gluten-free diet always relieves the signs and symptoms of celiac disease
The only treatment for celiac disease — eating a diet that excludes all foods that contain gluten — doesn’t always help.
“About 20% of people with celiac disease have ongoing symptoms despite their best efforts to follow a gluten-free diet,” says Dr. Kelly. Others have intermediate signs and symptoms, especially when accidentally exposed to gluten. Accidental exposure often occurs when someone eats ready meals or restaurant meals that claim to be gluten-free but are not. Cross-contamination with gluten-containing foods is another possible route.
Science is currently looking for potential solutions for people with celiac disease whose symptoms persist despite dietary restrictions. Three promising approaches are:
- Enzymes that break down gluten that people can take with gluten-containing foods. “It’s a similar idea to the lactase pills that people with lactose intolerance take to help them digest dairy products,” Dr Kelly said.
- It weakens the immune response to gluten by inhibiting an enzyme called tissue transglutaminase, which makes gluten stronger as an antigen.
- Reprogramming the immune response so that the body does not react to gluten.