Celiac disease does not always produce common stomach or digestive symptoms. In fact, it can hide behind symptoms that seem to be completely unrelated to the digestive system and can be surprisingly subtle.
Celiac disease is a disorder in your immune system that occurs when gluten (a protein in wheat, barley, and rye) causes your body to attack and damage the lining of the small intestine.
In this Q&A, Juliana Kennedy, MD, Director of Mount Sinai’s Pediatric Celiac Disease Program, explains how knowing the signs of celiac disease can help families and pediatricians find it early and prevent complications, even among people, including adult family members, who may show no symptoms at all. Dr. Kennedy is also Assistant Professor of Pediatrics (Gastroenterology) at the Icahn School of Medicine at Mount Sinai.
How can I spot celiac disease in my kids and teenagers?
Symptoms often vary by age. While some children show classic signs, others may have no digestive symptoms. Some may have non-digestive symptoms such as skin or dental problems. Some may have no symptoms at all.
The classic gastrointestinal symptoms of celiac disease include:
- Chronic diarrhea
- Belly pain
- Belly bloating
- Nausea or vomiting
- Weight loss or weight faltering, which is a term that pediatricians use to describe a child whose weight gain is significantly lower than expected
- Constipation
The atypical symptoms of celiac disease can vary widely and include:
- Growth: Short stature or delayed puberty
- Dental: Pitting or discoloration of permanent tooth enamel
- Neurological: “Brain fog,” headaches, or irritability
- Skin: An intensely itchy, blistering rash called dermatitis herpetiformis
- Certain gastrointestinal symptoms such as gastroesophageal reflux disease (GERD) or liver inflammation (hepatitis)
Why is screening family members for celiac disease important?
Celiac disease occurs in people with certain genetics. Close family members often share similar genes, so the rate of celiac disease among first-degree relatives—typically your parents, siblings and children—is about 7 percent to 20 percent. This compares to 1 percent for the general population. This is why we focus heavily on the “first-degree” circle. We recommend screening first degree relatives when their family member is diagnosed. They are at a much higher risk than the general population, even if they aren’t currently showing symptoms. By diagnosing them early, we can prevent future complications.
How is celiac disease diagnosed?
If you suspect celiac disease, an important step is to not remove gluten from your child’s diet until testing is complete. Doing so can cause false negative results. If your child is already on a gluten-free diet, you should discuss this with your doctor before testing.
Juliana Kennedy, MD
There are two steps to diagnosing the condition:
- First, a blood screening checks for specific antibodies.
- Next, an endoscopy and biopsy confirm the diagnosis by looking at the lining of the small intestine.
What happens if celiac disease is undiagnosed or not treated?
Early intervention is key. If left untreated, celiac disease can lead to long-term complications including permanent short stature, weakened bones (also known as osteoporosis), and infertility.
What are the treatment options?
The current treatment is a strict, lifelong gluten-free diet. This means more than just avoiding bread. Families need to watch for hidden gluten in sauces, seasonings, and cross-contamination in kitchens. While this may seem difficult, we have the tools and resources to support any family as they navigate life on a gluten-free diet. Treatment is critical because, when celiac disease is caught early, the small intestine can heal completely. This allows children to reach their full growth potential and avoid long-term complications.