Gluten Sensitivity and Celiac Disease in Kids: A Simple Guide

Listen to this article:

Awareness about gluten and gluten intolerance is increasing as we learn more about nutrition and health. Approximately 1% of people in the United States have celiac disease, but up to an additional 6% of the population may have a non-celiac gluten sensitivity.

Figuring out how your child’s body reacts to gluten and what to do if they have a gluten intolerance can prevent many headaches (literally and figuratively).

This guide will give you the basic information you need to know about different gluten intolerances, how they’re diagnosed, and how to support your child with a gluten-free diet.

What is Gluten?

Gluten is the major storage protein complex of wheat, and makes up approximately 85-90% of the protein content of a wheat kernel (commonly known as a wheat berry).

As a protein complex, gluten is made up of hundreds of proteins but it mainly contains gliadin and glutenin.

Gluten is naturally found in:

• Wheat
• Wheatberries
• KAMUT® Khorasan wheat
• Einkorn wheat
• Emmer
• Durum
• Semolina
• Spelt
• Farina
• Farro
• Graham
• Rye
• Barley
• Triticale
• Malt
• Brewer’s yeast
• Wheat starch

These grains are used in a variety of foods. Foods commonly made with these ingredients include (but are not limited to):

• Breads
• Pastries
• Noodles
• Pastas
• Baked goods
• Crackers
• Cereal
• Granola
• Biscuits
• Waffles and pancakes
• Panko breadcrumbs
• Croutons

Not all sources of gluten are obvious—gluten and wheat are common additives to foods, cosmetics and medications.

Gluten is often added to processed foods and medications for many reasons. It is a heat stable ingredient that can act as a binder (holding ingredients together), add to a food’s nutritional value, or add to the bulk of a food or medicine.

Foods and condiments that may have added gluten or wheat include:

• Sauces and gravies
• Pre-seasoned meats
•  Processed meats
• Soups
• Salad dressings and marinades
• Meat substitutes made with seitan
• Brown rice syrup

Cosmetics (including lip balm), oral care products, supplements, and various medications may also contain traces of gluten.

How the body reacts to gluten in gluten intolerance

Gluten intolerance in kids starts with the inability to fully digest gluten proteins in the digestive tract.

Gliadin and glutenin are rich in the amino acid proline, which is difficult for many protein enzymes produced by the stomach, pancreas and intestines to break down.

Gliadin can temporarily increase gut permeability, which isn’t an issue in most people. However, during celiac disease or non-celiac gluten sensitivity, gliadin fragments can pass through the gut barrier and cause inflammation.

Gluten intolerance increases the infiltration of intraepithelial lymphocytes, a type of white blood cell, that can infiltrate into the gut barrier.

These lymphocytes can trigger both innate immune response (a general immune response) and/or adaptive immune responses (targeted to specific foreign substances) in the gut.

Depending on what kind of gluten intolerance your child has (wheat allergy, celiac disease, or non-celiac gluten sensitivity), the response to gluten will be different.

Wheat allergies may cause typical symptoms of allergies including difficulty breathing, hives, irritation of the mouth or throat, headaches, and nasal congestion in addition to gastrointestinal symptoms.

The common symptoms of celiac disease and non-celiac gluten sensitivity are detailed later in this article, but include gastrointestinal and extraintestinal (outside of the gut) symptoms.

What does it mean when your child has celiac disease?

Celiac disease is an autoimmune condition that causes an immune response to the ingestion of gluten that attacks both gluten and the cells of the intestine.

A child can develop celiac disease shortly after the introduction of gluten into the diet within the first year of life, but celiac disease can manifest at any time during childhood.

As mentioned before, gliadin is difficult for our bodies to digest. In the development of celiac disease, gliadin is partially broken down, then transported to the gut mucosa.

Once these gluten fragments are there, an enzyme called tissue transglutaminase (tTG or TG-2) modifies them so that our immune cells think it is a toxin (or antigen).

The body creates antibodies to protect against the gluten fragments, but it also creates autoantibodies against the tissue transglutaminase in our gut mucosa.

Continuing to eat gluten after this immune response can result in long-term damages to the gut. In celiac disease, the adaptive immune response activates and spreads throughout the gut to increase inflammation, malabsorption, and other systemic issues.

Villi, which are the small, finger-like projections on the gut that increase the absorption of nutrients, shrink or flatten in response to this inflammation. This makes it more difficult for your body to absorb nutrients into the body.

At the same time, crypt cells, which provide stem cells to renew the epithelial layer of the intestines, generate rapidly in an attempt to make up for villi losses.

What is the difference between celiac disease and gluten sensitivity?

The main difference between celiac disease and gluten sensitivity is the involvement of the immune system.

Celiac disease is characterized by a specific autoimmune response that causes the body to attack gluten proteins as if they are toxins.

Non-celiac gluten sensitivity is classically defined as a reaction to gluten in which neither autoimmune or allergic mechanisms are involved.

However, a 2020 study suggests that non-celiac gluten sensitivity may be caused by a combination of an innate immune response that differs from celiac disease and weakened intestinal permeability.

Some symptoms of celiac disease and gluten sensitivity overlap, such as the gastrointestinal symptoms of abdominal pain, bloating, and bowel movement abnormalities (diarrhea, constipation). Fatigue may also be a common side effect between the two conditions.

However, celiac disease does cause extensive damage to the villi of the intestinal tract and can have the manifestation of other extra intestinal symptoms.

What causes the development of celiac disease in children?

The development of celiac disease in children can be attributed to two major categories: genetics and environment.

Children who carry the genes for HLA-DQ2 or HLA-DQ8 are significantly more likely to develop celiac disease compared to those who don’t.

Other genetic factors that influence the development of the protective layer of the intestines and immune system may also impact risk of celiac disease development.

Children with type-1 diabetes or other autoimmune conditions, IgA deficiency, a family history of celiac disease, or female gender at birth may also have a greater likelihood of developing celiac disease.

The main environmental factor in celiac disease is the introduction of wheat or gluten into the diet.

Introducing gluten into the diet too early can be a contributing factor to the development of celiac disease.

During early infancy, the immune system and gastrointestinal system are still immature and require development to tolerate solid foods.

Introduction of gluten-containing grains within the first 3 months of life has been associated with risk of autoantibodies against gluten and wheat. This risk decreases if you wait to introduce gluten-containing foods until at least 4 to 6 months of age.

The American Academy of Pediatricians current infant feeding guidelines recommend waiting until after 6 months to introduce solid foods to the diet.

If your child does have a confirmed HLA-DQ2 or HLA-DQ8 genotype, then it may be beneficial to delay the introduction of gluten into the diet until after your child has reached 5 years old.

Other potential triggers of celiac disease include viral infections, tissue damage, early termination of breastfeeding.

Can a child grow out of gluten intolerance?

The answer to this depends on what form of gluten intolerance you’re talking about.

Celiac disease is an autoimmune condition that you can manage, but will never outgrow. Once diagnosed with celiac disease, it is recommended to follow a life-long gluten free diet.

According to the National Institute of Allergy and Infectious Diseases, a majority of children with a wheat allergy will likely grow out of their allergy by adolescence. Though a sizable number of individuals will have persistent wheat allergies into adulthood.

Research suggests that non-celiac gluten sensitivity can be transient and outgrown. To see if your child has outgrown their gluten intolerance, your doctor will likely recommend for them to follow a gluten-free diet for 12 to 14 months.  Then have their gluten tolerance tested again.

How do you know if your child has a gluten intolerance?

The first step to determining if your child has a gluten intolerance is to see if they have any symptoms. Gluten intolerance in kids can manifest a variety of symptoms depending on their age.

Infants and toddlers primarily have gastrointestinal symptoms with gluten intolerances such as vomiting, abdominal distention, diarrhea with smelly stools, and bloating. Additional symptoms may include poor growth or failure to thrive and irritability.

Young, school-aged children may still have some gastrointestinal symptoms such as diarrhea, constipation, abdominal distention, and stomach pain. These children may also experience dental issues, weight loss, difficulty gaining weight, or short stature.

Adolescents and teenagers may exhibit more symptoms that are related to nutrient deficiencies and growth delays. Common symptoms include weight loss, stunted growth, delayed puberty, chronic fatigue, headaches, skin rashes, mood disorders, and mouth sores.

If your child is exhibiting some of these symptoms after eating certain wheat or gluten-containing foods, then it may be necessary to get a formal assessment of their gluten tolerance.

Wheat allergies are confirmed by skin prick tests for allergies and serum IgE antibodies to wheat allergens, followed by a gluten challenge.

Celiac disease is confirmed by presence of TG2-specific (transglutaminase 2) autoantibodies and endomysial antibodies (IgA EMA), as well as biopsy results showing villous atrophy within the small intestine.

Anti-gliadin antibody tests can also help confirm celiac disease in individuals with negative TG2-specific antibody tests.

How to determine if your child has non-celiac gluten sensitivity

Diagnosis of non-celiac gluten sensitivity (NCGS), also known as non-celiac wheat sensitivity, is somewhat more difficult compared to other gluten intolerance conditions.

Your child will have to go through a series of tests to rule out celiac disease and wheat allergy before a diagnosis of NGCS is confirmed.

Because the symptoms of irritable bowel syndrome and NCGS tend to overlap, a gluten challenge may be needed to confirm diagnosis, especially if you have not already eliminated gluten from their diet.

In a gluten challenge, your child will follow a gluten-free diet for approximately 6 to 8 weeks. After the gluten-free period, there is an intentional reintroduction of a certain amount of gluten.

If your child has a positive response (reduction of symptoms) during the gluten-free period with a return of symptoms after reintroduction of gluten, then your child will likely be diagnosed with NCGS.

Gluten challenges are discouraged in children under the age of 5 years or in their pubertal growth spurt. But it still may be recommended in children already following a gluten free diet in absence of a formal work-up of celiac disease.

Children already following a gluten-free diet without celiac disease diagnosis can receive genetic testing for alleles that show a genetic predisposition for celiac disease.

Other tests can be used to exclude a celiac disease diagnosis and increase likelihood to be diagnosed with NCGS. Participation in a randomized placebo-controlled trial with gluten can further confirm NCGS.

A diagnosis of NCGS does not rule out the possibility of your child having irritable bowel syndrome due to overlap in FODMAP intolerances.

We currently have an imperfect system to determine NCGS compared to the laboratory markers and tests that can confirm celiac disease and wheat allergy, but it is a good start.

Researchers continue to look for specific biological markers that can consistently diagnose NCGS.

What does treatment for celiac disease look like?

Currently, the only available treatment for celiac disease is a gluten-free diet. A gluten free diet for kids significantly decreases symptoms and can decrease risk for long-term complications.

It may take between 12 to 24 months of a gluten-free diet for a child’s gut to repair itself and symptoms to improve.

If symptoms of celiac disease do not improve even after following a gluten free diet for 1 to 2 years, then a gluten contamination elimination diet may be implemented. This elimination diet consists of only fresh fruits, vegetables, meat, and limited condiments.

Your child’s gastroenterologist may also offer an immunosuppressant medication to help moderate the autoimmune response of celiac disease.

If your child has celiac disease, they should be monitored by a gastroenterologist and a registered dietitian to navigate a gluten-free diet.

Because children with celiac disease have damage to the intestinal tract that may decrease absorption of nutrients, regular monitoring of nutrient levels through lab testing should be done.

What foods can you give a child who is gluten intolerant?

Transitioning to a gluten free diet when your kid is newly diagnosed with a gluten intolerance can seem intimidating. But there is actually a lot of variety in a gluten free diet for kids.

To start, there are food groups when purchased in their fresh and natural forms, that are inherently gluten free:

• Meat and poultry
• Beans, legumes and nuts
• Fish and seafood
• Vegetables
• Fruits
• Dairy
• Else nutrition products

Looking at gluten-free grains for cooking and baking, you also have several options:

• Quinoa
• Millet
• Rice
• Teff
• Amaranth
• Flax
• Tapioca
• Sorghum
• Gluten-free oats
• Nut-based flours
• Corn (as cornmeal, grits, polenta, hominy)
• Buckwheat (despite the name, it doesn’t contain wheat)

Though all of these are gluten free, you do want to exercise caution with oats.

Oats can easily be subject to cross-contamination with gluten-containing grains. If your kid does enjoy eating oatmeal, be sure to purchase a brand that specifically says that it is gluten-free.

Packaged foods can be a bit trickier when trying to find gluten free food for kids, but there are some simple tricks that can make your search easier:

First, check to see if your food is labeled as gluten free. The FDA only allows manufacturers to label their foods as “gluten-free” if a serving of the food contains less than 20ppm of gluten.

Your second step is to check the allergen listing. Because wheat is one of the top eight allergens in the United States, the FDA requires a clear warning that a food contains wheat.

If wheat is not listed on the label, you should still check for other gluten-containing ingredients.

Rye and barley are examples of gluten-containing ingredients that aren’t major allergens. Packaged foods are required to list all ingredients used to make a product, so you should be able to find any gluten ingredients.

While you’re looking at the ingredients label, you should also check for any chances of cross-contamination. Manufacturers will note if a product may contain traces of wheat or were processed in facilities that also process wheat and other gluten-containing grains.

Some companies go the extra mile and get their foods tested by a third-party to guarantee that their foods are gluten free.

NSF International, the Gluten Intolerance Group, and Brand Reputation Compliance Global Standards (BRCGS) are examples of companies that have gluten-free certification programs for brands.

Online databases from these companies can help you find certified gluten-free foods. The Celiac Disease Foundation also offers a product finder database on their website.

If you’re on the go and want to find gluten free snack or gluten free lunch for kids, there are apps you can download to search databases to check if products are gluten free.

Conclusions

Gluten intolerance in kids can be difficult to navigate as a parent at first, but it doesn’t have to stay that way.

If your child has a potential risk for celiac disease or you’ve recognized signs and symptoms of gluten intolerance, a proper diagnosis can help you understand what’s going on inside.

Be sure to bring up your concerns about your child’s potential gluten intolerance with their pediatrician. The sooner they are seen, the better their outcomes and quality of life will be.

Depending on what form of gluten intolerance your child has, a gluten-free lifestyle may be temporary or a life-long journey.

No matter how long your kid requires a gluten-free diet, they will always have options for delicious foods and supplements to get the nutrition they need.

Else Nutrition offers plant powered toddler formulas and nutrition shakes for kids that fit perfectly into a gluten free diet. Else products are made with minimally processed whole foods including organic buckwheat, tapioca and almonds and contain 20 vitamins and minerals to support their healthy growth.

The content and advice provided in this article is for informational purposes only and is not a substitute for medical diagnosis, treatment, advice for specific medical conditions. Always consult a pediatrician to understand the individual needs of your child.