What is non-celiac gluten sensitivity?

Non-celiac gluten sensitivity (NCGS) is a condition the medical community is still learning about. It is often confused with celiac disease and wheat allergies, but it’s a distinct condition with different causes and effects.

Children who have NCGS may have symptoms similar to an allergic reaction or celiac disease after consuming gluten – but it isn’t caused by either IgE-mediated allergies or celiac disease. It’s important to work with your child’s healthcare team to ensure the correct diagnosis and appropriate treatment.

Causes of non-celiac gluten sensitivity

It’s believed gluten – or a component within gluten – is responsible for the symptoms of non-celiac gluten sensitivity. It’s possible that other parts of gluten-containing plants, called FODMAPs could also be involved. FODMAP stands for “Fermentable Oligo-, Di-, Mono-saccharides And Polyols” – in plain English, that’s a group of carbohydrates that our bodies have trouble digesting. Some people are more sensitive to their effects than others. Grains that are high in gluten also tend to have a lot of FODMAPs.

Although researchers are still learning about this disease, NCGS appears to be less severe than celiac disease, as it doesn’t cause the damage to the intestinal tract that celiac disease does. This video helps explain some of the differences between the gluten-related disorders.

Signs and symptoms of NCGS

Symptoms of non-celiac gluten sensitivity can be very similar to celiac disease, affecting the gastrointestinal tract, as well as other parts of the body. These may appear hours or days after gluten exposure. Symptoms may include:

• Bloating or gas
• Nausea
• Cramping
• Diarrhea and/or constipation
• Headaches
• Fatigue
• Difficulty concentrating
• Numbness of the arms, legs or fingers
• Joint or bone pain

People often confuse NCGS with a wheat allergy. While both conditions may have GI-related symptoms, wheat allergy typically has an earlier onset and includes other symptoms such as hive, facial swelling or even anaphylaxis, a life-threatening allergic response.

Testing & diagnosis for non-celiac gluten sensitivity

Currently, there is no definitive test for non-celiac gluten sensitivity. If your child is experiencing symptoms, doctors will first test for similar conditions, such as celiac disease and wheat allergy. Tests for wheat allergy and celiac disease are usually done through blood tests to check for markers that would indicate either condition. Some tests require the patient to continue eating foods that contain gluten. Your child’s doctor can provide more detailed guidance before running the tests.

Once similar conditions have been ruled out, and if your child’s symptoms improve once they start to follow a gluten-free diet, your child’s doctor may diagnose NCGS.

Going gluten-free is a popular diet trend, but it should not be done without a consultation with your child’s medical team. Because NCGS is similar to other conditions, it’s important not to rely only on observations of your child and their diet. Doctors at CHOP’s Division of Gastroenterology, Hepatology and Nutrition can provide the expertise and tests needed to ensure your child has the correct diagnosis and receives the right treatment for their specific condition.

Treatments for non-celiac gluten sensitivity

There is currently no cure for non-celiac gluten sensitivity. But with the right treatment, your child’s symptoms can be managed.

The most important treatment for NCGS is to remove gluten from the child’s diet – but only after recommended by your child’s physicians. Many people equate gluten with wheat, but gluten is also found in rye, barley, couscous and some other grains. Once your child is diagnosed with NCGS they need to avoid those grains and any products derived from them. Some foods, such as oats, don’t contain gluten but are often cross-contaminated with gluten-containing grains, such as wheat.

Some foods, such as bread and cereal, are obviously likely to contain these grains; others are much less obvious. Foods that often contain gluten include processed meats, soy sauce, broths/soup bases and more. It’s important to read the ingredients on processed or prepared foods to ensure you know what your child is consuming. Even if you have used a product before, always re-read the ingredients list, because products can change their formulations without clearly marking that on the package. 

It’s natural to worry that removing all gluten from your child’s diet will severely limit their options when eating. Your child’s doctor can give you detailed information on how to read food labels to avoid gluten-containing ingredients. Because people are more aware of food allergies and celiac disease, food labels are much clearer about which prepared foods contain gluten ingredients, and the FDA has guidelines regarding when foods can be labeled “gluten-free.” In addition, there are reputable third-party organizations that certify gluten-free foods.

CHOP dietitians from the Clinical Nutrition Department can help you with recipes and meal plans that allow your child to still enjoy their favorite foods and maintain a healthy, balanced diet.

Gluten can also be found in many non-food products such as prescription or over-the-counter medications, makeup, adhesives on stamps and envelopes, play items including paint and modeling dough, and even personal care products such as shampoo and mouthwash. Your child’s doctor can help you with resources for identifying and avoiding these hidden gluten carriers as well.

Follow-up

Ongoing treatment for non-celiac gluten sensitivity consists largely of ensuring your child adheres to a gluten-free diet. You may want to share information about avoiding gluten with extended family, close friends and your child’s school so they can help you support your child’s dietary requirements. 

Your child’s doctor may ask you to schedule regular follow-up visits to monitor your child’s health. As your child matures, doctors will help them learn age-appropriate ways to self-manage NCGS independently. These visits are also an opportunity to get updates on any new information the medical community has about NCGS.

There is no solid data that NCGS is hereditary, but anecdotally doctors have noticed that having one family member with celiac disease or NCGS increases the likelihood that other family members have one of them as well. Once your child is diagnosed, other family members who have similar symptoms may want to get tested to see if they have either NCGS or celiac disease.

Outlook for children with NCGS

The medical community is still learning about non-celiac gluten sensitivity, but recent research provides reason for hope. Unlike celiac disease, NCGS doesn’t cause long-term damage to the patient’s intestines, and some research indicates NCGS may not be a lifelong condition.

As scientists learn more about NCGS in the future, your CHOP doctor can keep you updated on anything that is discovered about causes, risk factors for other diseases as well as any developments regarding new treatments.