4 Surprising Facts About Celiac Disease

Celiac disease is a tricky condition. It can take many years to get a diagnosis because it is often missed or mistaken for other conditions. The symptoms are quite vague and some people have no symptoms at all! The Celiac Disease Foundation estimates that 2.5 million Americans are undiagnosed and therefore at-risk for long-term health complications.

When someone with celiac disease eats gluten, it causes damage to the small intestine and nutrients aren’t absorbed properly. About 1 in 133 Americans have this genetic, autoimmune disorder. Symptoms can range widely. The most common in kids are: stomachaches, bloating, constipation or diarrhea, weight loss or poor growth, irritability and fatigue.

There is no cure for the disease and the treatment is to remove all gluten from the diet, including cross-contamination. In an effort to spread awareness about the condition, I’d like to share some potentially surprising facts about celiac disease:

4 Surprising Facts About Celiac Disease

1. There’s no typical path to diagnosis

Many diseases have a typical series of events that lead to a diagnosis. This isn’t the case with celiac disease. It can happen at any age and the symptoms vary widely. It is often a rule-out disease. If your child has been small all along and then drops off the growth curve, this might be a warning sign. The most common route for testing is via gastrointestinal symptoms. However, a large portion of patients are tested when other symptoms don’t have a good explanation. Or when a sibling is diagnosed with it. Many patients have associated conditions, like type 1 diabetes. A blood diagnostic test called tTG-IgA is often the first way we test for celiac disease.

2. It can be triggered even after negative test results

Even if your child has had a negative tTG-IgA test in the past, it doesn’t mean that he can’t develop the disease later in life. It is possible for the disease to be dormant, but triggered after life events such as viral infection, stress, pregnancy, or surgery. The North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN) suggests that all first-degree relatives get tested for tTG-IgA. Also, genetic testing can be done at any time, even if your child is already eating a gluten-free diet.

3. It’s more common in people with certain conditions

Your child is at a higher risk of developing celiac disease if she has Turner syndrome, or another autoimmune disorder like type 1 diabetes, thyroid disease or juvenile idiopathic arthritis. We don’t know exactly why the disease is more common in children with these conditions, but it seems linked to genetic differences in our immune systems. And perhaps differences in our gut bacteria at key times in life, including infancy.

4. It manifests differently in different kids

Celiac disease is not a one size fits all condition. Each child will have different symptoms and will react differently to various amounts of gluten. Just because your child has a higher tTG-IgA level doesn’t mean that her disease is more severe. We’ve seen kids with high tTG-IgA with no symptoms at all. It is important to note that even if your child isn’t having symptoms, to stick to the gluten free diet. Long-term complications from eating gluten can lead to poor growth, nutrient deficiencies, bone issues, fertility problems, and potentially bowel cancer.

There’s a lot we don’t know about celiac disease and we hope to learn more as we continue to study it. What we do know, however, is how much better patients do and feel on a completely gluten free diet. This can feel like an overwhelming task, so I do recommend you work with a dietitian to help eliminate it from your child’s diet. He or she can help you find factual materials and weed through the overload of information out there.