Celiac disease in children

Last Modified: 5/17/2021

celiac disease in children

Many children have sensitivities to different types of food, but how do you know if it’s simply allergies or something more severe like Celiac disease. For more on the topic, we turn to Edgardo Rivera-Rivera, MD, PPG – Pediatric Gastroenterology. He helps answer our question on the illness and how parents and caregivers can help their child cope with the chronic condition.

What is Celiac disease?

Celiac disease is an autoimmune disorder triggered by a food or, in this case, a protein called gluten. Gluten is present in foods containing wheat, barley and rye. When someone with Celiac disease consumes gluten, they have an abnormal response. Their immune system and body see gluten as something foreign, triggering an abnormal immune response that causes inflammation of the intestine.

Who is at risk for Celiac disease?

If we look at populations, typically speaking, people of primarily European descent or ancestry are at risk for Celiac disease. In the United States, 30% of the population has the genetic makeup to develop Celiac disease. However, just because the genes (DQ2 and DQ8) are present doesn’t mean you automatically have the condition. For example, in the U.S., it is estimated that only 1% of the population actually has Celiac disease.

Why do children develop Celiac disease?

Exposure to gluten is the only way Celiac disease will develop if you have the genetic makeup. So, even if someone has the genes to develop Celiac disease, but they never eat or get exposed to gluten, they won’t develop it. Gluten is the trigger. With that said, the condition is also hereditary. If someone has a first-degree family member (parent, sibling or offspring) with the illness, the probability of developing Celiac disease is about 10-15%.

For this reason, we recommend parents and children with first-degree relatives get a yearly blood test screening. You or your child may have had a negative test last year, but that doesn't mean you’ll have a negative test every year. You can develop Celiac disease at any point in life. Additionally, having an autoimmune disease like thyroiditis or type one diabetes, among other conditions, can also put a child at an increased risk for developing Celiac disease.

What are the warning signs or symptoms of Celiac disease?

Symptoms can vary depending on the patient, but the disease can affect children differently depending on their age.

  • Infants and toddlers: It's rare to see or diagnose Celiac disease in an infant or toddler, but when we do, those children can present with symptoms including, but not limited to, irritability, abdominal pain, vomiting, bloating, diarrhea, constipation, malnutrition and poor growth.
  • School-age children: As children get older, the incidence rate starts to increase. Celiac disease is much more common in the pediatric population once the child is around school age, roughly seven years of age and older. While vomiting is less common at this age, they may experience symptoms that include but are not limited to stomach aches, abdominal pain, diarrhea, constipation and have difficulty losing or gaining weight.
  • Teens: Older children also experience a wide variety of symptoms. They can include but are not limited to abdominal pain, constipation, diarrhea, stunted growth, weight loss, chronic fatigue, recurrent headaches or migraines, itchy skin or rash and even brain fog. Additionally, adolescents with Celiac disease may also deal with mood disorders like anxiety, depression and panic attacks. School performance may be affected as well. Does this mean every child struggling in school has Celiac disease? No, but if some other signs or symptoms could point toward the gastrointestinal tract, we should check those patients.
Is there a difference between Celiac disease and gluten sensitivity?

Yes, with Celiac disease, if you ingest gluten, your body and immune system will see the protein as foreign and trigger an abnormal immune response, causing a significant amount of inflammation. Gluten sensitivity, on the other hand, has more to do with food allergies. For example, when you eat something the body doesn’t like, you go through a similar response, but it doesn’t cause the severe inflammation that accompanies Celiac disease.

In general, Celiac disease has a more severe inflammatory response than a gluten sensitivity or allergy. The characteristics at the tissue and cellular level are different, and the absorption of the small intestine gets severely compromised. This is because the villi, small finger-like projections in our intestines that help absorb nutrients, get cut off. This blunting action doesn’t usually occur with allergies.

How is Celiac disease diagnosed?

If parents or caregivers are concerned, they should have their child screened with a blood test. However, keep in mind the testing is not the way to diagnose Celiac disease. Once a patient tests positive for celiac or the blood test comes back abnormal, they should be referred to a pediatric gastroenterologist for an endoscopy with biopsy to confirm Celiac disease. The blood test is an excellent screening tool, but the endoscopy is the confirmatory test.

What is the treatment for Celiac disease?

Unfortunately, there is no cure. Celiac disease is a life-long chronic condition. With that said, there are ways to manage the condition. Following a gluten-free diet and avoiding all foods that contain gluten is the best course of treatment. For many people, this lifestyle change will eventually halt symptoms and help heal intestinal damage.

How can parents/caregivers help their child cope and live with Celiac Disease?

First, I want parents to realize that they don’t have to do this alone. It’s not an easy process. It is challenging, but education is key in understanding the disease. Also, parents or caregivers must identify a good provider or healthcare team. That support will be crucial. At Parkview, it’s not just me treating the patient, but rather a multidisciplinary team. Once a child is diagnosed with Celiac disease, we pair up with a dietician and have them in the room to explain and go over the dietary recommendations for the patient. They have experience and training on how to manage the different challenges of a gluten-free diet.

Additionally, we have experienced nurses who can help when parents call our office with questions and patient education. We also have connections with psychologists and counseling services that we often refer patients to because they make all the difference during the transition and process. Finally, please remember that there is a very steep learning curve with this type of lifestyle change. It will take time and patience, but we will do everything we can to educate and empower patients and families while providing them with quality resources and information.

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