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You’ve seen the “gluten-free” label on all kinds of products at the grocery store, and you may have wondered what that label is all about. But if you happen to have a child with celiac disease, or if you have the disease yourself, you know exactly what gluten-free means.

The label is designed to protect people with celiac disease from the inflammation that can affect their gastrointestinal tract when they ingest a typically harmless little protein called gluten, which is found in a wide variety of foods and non-food products.

 For people with celiac disease, explains Dr. Arielle Bergman—a pediatrician, gastroenterologist and Assistant Professor of Pediatrics at AV�о���— gluten is anything but harmless. Keep reading to find out more about the troubled relationship between gluten and the GI tract of a child with celiac disease, along with the complexities of that relationship. As well, she’ll address the harms and potential benefits of downsizing gluten from the diets of those who ��Dz�’t have celiac disease.

What is gluten?

Gluten is a protein that’s found naturally in wheat, barley and rye. The term “gluten” comes from the Latin word for “glue.” It acts a structural binder in certain foods, such as bread, pasta and baked goods. But it can also be found in less obvious sources, including sauces, seasonings, processed foods, medications, vitamins and personal care products. 

Gluten is also the trigger for a range of gastrointestinal and non-gastrointestinal symptoms that afflict children and adults with celiac disease.

What is celiac disease?

“Celiac disease is a chronic autoimmune condition that occurs in genetically susceptible individuals,” Dr. Bergman says. “When people with celiac disease consume gluten, their immune system inappropriately attacks the lining of the small intestine, leading to inflammation and damage to the fingerlike projections, called villi, that increase the intestine’s capacity to absorb nutrients from food.

“Damage to the villi can lead to a wide range of gastrointestinal symptoms, such as

abdominal pain, bloating and diarrhea. Patients may also experience constipation, nausea, vomiting and weight loss,” she continues.

Non-gastrointestinal symptoms may include fatigue, iron deficiency anemia and joint pain. Children in particular may experience poor weight gain, slowed growth and delayed puberty.

Be aware, however, that some people with celiac disease have few symptoms, or no symptoms at all.

What does a “gluten-free” label actually mean?

The Food and Drug Administration (FDA) doesn’t require gluten-free foods to be labeled as such. In fact, Dr. Bergman explains, it is voluntary for a manufacturer to label a food “gluten-free.” However, if that manufacturer decides to do so, the FDA requires that a gluten-free declaration meet certain criteria.

Specifically, the food or product must contain fewer than 20 parts per million (ppm) of gluten—the lowest detectable amount that’s considered safe.

However, not all naturally-occurring gluten-free foods will be labeled, such as fruits, vegetables and meat.

Can gluten-free foods be accidentally exposed to gluten?

Yes. It’s called “cross-contamination,” and it happens when a gluten-free food comes into contact with a gluten-containing food during manufacturing or food preparation. But for people with celiac disease, even a small amount of gluten, especially with repeated exposure, can lead to intestinal damage, even when symptoms are mild or non-existent.

Here are a couple of surprising examples of cross-contamination:

• French fries may be gluten-free, but if they’re cooked in the same oil as breaded chicken fingers, they can become cross-contaminated.
• Grape jelly is gluten-free, but if a knife spreads the jelly on gluten-containing bread, the jelly can become cross-contaminated.

“Families can avoid cross-contamination by cleaning food preparation surfaces, using separate or ‘squeezable’ condiment jars, asking detailed questions at restaurants regarding food preparation and handling, and working closely with a registered dietitian who has expertise in celiac disease,” Dr. Bergman advises.

Who should be screened for celiac disease?

Testing should be considered for anyone with symptoms suggestive of celiac disease, and for certain higher-risk groups, including:

• those with a first-degree relative with celiac disease
• those with type 1 diabetes, autoimmune thyroid disease, Down syndrome, Turner syndrome or Williams syndrome 

Your pediatrician can help determine when screening is appropriate.

How is celiac disease diagnosed in children?

Celiac disease is diagnosed via blood tests designed to evaluate the antibodies that become elevated in celiac disease, says Dr. Bergman. If these are present, the next step is to perform an upper endoscopy and small intestinal biopsies to see whether the characteristic intestinal damage seen in celiac disease is present. Under certain circumstances, some children can be diagnosed without a biopsy.

“Early diagnosis is important, because untreated celiac disease can affect growth, nutrition, bone health and overall well-being,” she says. “Once diagnosed, children can begin a strict gluten-free diet, which allows the intestine to heal, symptoms to improve, and long-term complications to be reduced or avoided altogether.”

What should families do if they suspect their child has celiac disease?

“Families should discuss their concerns with their pediatrician or primary care provider, and seek evaluation if their child has risk factors or is having symptoms. It’s important that children continue eating gluten until testing is completed. Starting a gluten-free diet before evaluation can interfere with our ability to make an accurate diagnosis, and may make test results difficult to interpret,” Dr. Bergman says.

Why do some people without celiac disease choose a gluten-free diet?

Some people report symptoms that improve when gluten-containing foods are removed from their diet, even though they ��Dz�’t have celiac disease or a wheat allergy. This condition is often referred to as non-celiac gluten sensitivity (NCGS).

“NCGS remains an area of active research,” she says. “While evidence suggests that some individuals experience genuine symptoms related to gluten-containing foods, the underlying mechanisms are not well understood, and symptoms may be triggered by other components of wheat or certain fermentable carbohydrates, rather than gluten itself.”

Unlike celiac disease, NCGS does not cause autoimmune intestinal injury, and it’s not associated with the same long-term complications. Because symptoms can overlap, it’s advisable to seek evaluation for celiac disease before eliminating gluten from your diet.

“Some people think “gluten-free” means healthy. That’s not necessarily the case,” Dr. Bergman says. “A gluten-free diet may end up featuring more ultra-processed foods, which may have higher calories, fat and sodium, and less fiber. That’s one more reason to work with a registered dietitian if you have celiac disease—or, for that matter, non-celiac gluten sensitivity.”

Key takeaway points

• Celiac disease is an autoimmune condition that affects genetically susceptible individuals.
• Gluten is a protein that’s found naturally in certain grains, as well as in other foods and non-food products.
• When people with celiac disease consume gluten, their immune system attacks the lining of the small intestine.
• The most common celiac symptoms are abdominal pain, bloating and diarrhea, along with damage to the small intestine.
• Children with the disease may experience poor weight gain, slowed growth and delayed puberty.
• Diagnosing celiac disease starts with a blood test, followed by an upper endoscopy and small intestinal biopsies to confirm the diagnosis.
• A condition called non-celiac gluten sensitivity (NCGS) is an area of active research.

Make an appointment with a pediatric gastroenterologist at AV�о��� by calling (646) 962-3869 or visiting the department’s website here.