Growing up gluten-free: The best treatment for kids with celiac disease
April 15, 2021
At about six months of age, when weaning begins, babies usually get their first taste of gluten – a protein found in all forms of wheat, rye, and barley.
Any time between that first encounter and adolescence, a child may begin to show signs of celiac disease, a genetic, lifelong, autoimmune disease that causes negative reactions to gluten. Kids with celiac may experience mild to moderate symptoms, such as:
- Constipation, diarrhea, and bloating
- Delayed puberty
- Dental enamel erosion
- Fatigue
- Stomach cramping
- Malabsorption of nutrients
- Nausea and vomiting
- Unintended weight loss
- Skin rash
- Poor growth
Left untreated, celiac disease can lead to complications such as small intestinal damage, malnutrition, osteoporosis, infertility, gastrointestinal cancer, heart disease, and neurological conditions like epilepsy and migraines.
Approximately 1 in 100 children have celiac disease, making it one of the most common conditions in children. It also runs in families with first-degree relatives – such as a parent, sibling, or child – having a 1 in 10 chance of developing celiac disease.
While there is no cure yet for celiac, switching to a gluten-free diet and lifestyle can improve symptoms and prevent major health repercussions. Children must learn to avoid certain foods, and families must navigate new routines and tradeoffs at home, school, and social events. Making these adjustments can seem overwhelming at first, but you're not alone.
The UT Southwestern Pediatric Group Celiac Disease Program – the only medical pediatric celiac program in North Texas – can help you navigate the emotional and physical challenges of managing celiac disease.
To get your child's health and nutrition on track, we need to narrow down whether your child has celiac disease, gluten intolerance, or a wheat allergy – all of which require different levels of lifestyle changes.
Celiac disease vs. gluten intolerance vs. wheat allergy
These three conditions share similar symptoms. However, each condition causes your child’s body to react to gluten in a distinct way:
- Celiac disease: The immune system attacks the small intestine when it detects the presence of gluten. Long-term exposure to gluten can damage the intestine and lead to malnutrition.
- Gluten intolerance: Consuming gluten causes short-term symptoms. While unpleasant, gluten intolerance generally doesn’t cause long-term harm.
- Wheat allergy: This allergic immune response is unlikely to damage the intestine. However, contact with wheat can cause anaphylaxis – sudden respiratory distress and inability to breathe.
Symptoms vary greatly in these three conditions, from mild to severe. While it's not fully understood why symptoms vary so much, research suggests that celiac disease is multi-factorial, including environmental and genetic components, triggered by eating gluten.
UT Southwestern's Childhood Celiac Disease Program manages a pediatric database that shows us trends in how celiac disease presents clinically across a range of demographics, including ethnicity. The database gives us precise insights to quickly diagnose and plan care for children based on their unique risks and needs.
Related reading: Kids’ food allergies can affect the GI tract: Symptoms parents should know
Celiac disease diagnosis
Your child’s pediatric gastroenterologist will begin narrowing down a diagnosis with a thorough review of your child's symptomology. Research suggests the amount of gluten a child eats early in life may lead to earlier symptom onset in kids who are genetically predisposed to developing celiac disease.
Then, we will run a few tests to determine the cause of your child’s discomfort:
- Blood test: To look for high levels of certain antibodies caused by a reaction to gluten. Depending on these results, we may recommend a biopsy.
- Intestinal biopsy: The doctor will place your child under sedation and insert a thin, flexible tube with a camera down their throat and into the upper gastrointestinal tract. The doctor will remove a small tissue sample from the intestine, which will be examined for gluten-related damage.
- Genetic testing: Certain gene variants are linked to celiac disease. However, just because your child has these variants doesn’t mean they have or will develop celiac.
Recent research suggests biopsies may be unnecessary for people who have a genetic predisposition, symptoms, and whose blood test identified celiac disease. We’ll discuss with you whether this step is necessary for your child.
Related reading: Picky eater or something more serious? Kids and EoE
Even the youngest children should be involved in learning about their condition and diet. Whenever I hear a child say, “No, thank you. I can’t have that because I’m gluten-free,” I feel encouraged by the progress and level of acceptance.
Treatment revolves around living gluten-free
Right now, celiac disease can only be treated by avoiding gluten. Children who start a gluten-free diet often feel much better in as little as two weeks.
Avoiding gluten is so beneficial that the U.S. Food and Drug Administration (FDA) published a final rule in August 2020 that, in order for a product to be labeled "gluten-free," it must adhere to strict compliance requirements.
Expert Pediatric Care and Advice for Parents
For the latest news, trends, and information, check out the UT Southwestern Pediatric Group on Twitter.
Unfortunately, gluten is everywhere – and not just in the food we eat. The protein is also used in many everyday products such as vitamins, lotion, shampoo, and the adhesives on stamps and envelopes. It can even be in your child’s playdough (gluten-free playdough is available).
Education is key, at home and in the community. It can be challenging and surprising to learn which foods and products contain gluten, but you won’t be on your own. Our team can help your child and family, friends, and school or daycare staff:
- Read labels to know whether a food or product is safe.
- Choose vitamins or supplements to help counteract nutritional deficits.
- Create a safe space to prepare gluten-free food.
- Develop a 504 plan, which is a blueprint to keep your child safe and healthy at school.
- Find food swaps at restaurants, birthday parties, or other events.
- Prepare tasty recipes that are safe and healthy, like these from Beyond Celiac.
At first, parents may feel uncomfortable saying "we're gluten-free." They don't want to rock the boat or come across as demanding. But remember: This involves your child's health, and it's necessary to speak up on their behalf – and to teach them to do the same.
Even the youngest children should be involved in learning about their condition and diet. Whenever I hear a child say, “No, thank you. I can’t have that because I’m gluten-free,” I feel encouraged by the progress and level of acceptance.
Before you know it, you and your child will be pros at knowing what is and isn't safe and navigating those conversations.
The Celiac Disease Foundation is a helpful resource. We can also connect you with Metroplex groups such as GenerationGF and Gluten Intolerance Group (GIG). In these groups, you can share stories, tips, and information with other parents. Kids and families can even attend fun, safe camps specifically for celiac disease education. Learn more.
The future of celiac disease management
In October 2020, I authored an article in Current Opinion in Pediatrics regarding current research and in celiac disease management. Diagnostic advancements include measuring serum IL-2, a substance in the blood that contributes to immune T-cell growth. A patient's serum IL-2 level generally spikes in correlation with severe symptoms after a patient eats gluten.
In the future, we hope to offer nondietary treatment options, such as latiglutenase. This oral medication is currently in a phase 2 clinical trial. While not yet authorized for wide use and distribution by the FDA, latiglutenase has been shown to safely and effectively reduce celiac symptoms and improve patients' quality of life.
Until then, living a gluten-free lifestyle is the best way to ensure your child feels well and grows and thrives as they should. Living gluten-free is a bit easier today, due to increased availability of gluten-free foods and products in stores. Kids with celiac no longer have to give up their favorite foods. There are many options to adapt meals and treats to be gluten-free. Many restaurants now also offer gluten-free menus or denote when a dish is gluten-free.
Few things are more upsetting as when your child doesn’t feel well. We can help figure out what’s causing your child’s discomfort, and if it’s celiac disease, we’ll be your partners in going gluten-free and managing their care.
To find out whether your child might have celiac disease, call 469-497-2500 or request an appointment online.
