Does My Child Have Celiac Disease?


Over the last several years, you may have noticed that a lot more people, especially kids, are gluten-sensitive or gluten-intolerant, or have been diagnosed with celiac disease. Here at Westchester Health Pediatrics, we get a lot of questions from parents about this. They may have noticed that their child has frequent headaches, skin rashes, stomach aches, is not gaining weight and/or is frequently tired, and they want to know if he/she may have celiac disease. At WHP, we feel it’s very important for our parents to be as informed as possible, and we offer this blog as an informative resource.

First, what is celiac disease?

Mason Gomberg, MD

Celiac disease is an immune disorder caused by an intolerance to gluten. Gluten is the general name for the proteins found in wheat, rye, barley and the grains derived from them.

In kids with celiac disease, gluten damages the villi, the finger-like projections in the small intestine that are responsible for absorbing nutrients from food. When the villi are damaged, the body can’t absorb nutrients that it needs to grow. When this happens, a child can become malnourished.

In western countries, the rate of celiac disease is 1 in 100, most commonly in Caucasians.

Symptoms to look for in your child

Celiac disease can lead to a wide variety of symptoms in different people.

  • In infants, this might mean that they aren’t gaining weight and height as expected (“failure to thrive”), often accompanied by diarrhea and/or stomach pain.
  • Older kids can have diarrhea, abdominal pain, bloating, weight loss, fatigue, acne or skin rashes (especially around the elbows, buttocks, and knees). Over time, kids with celiac disease might develop anemia and mouth sores, and become withdrawn or irritable. On the other hand, some people with celiac disease have no symptoms at all.
  • It’s also important to know that the symptoms of celiac disease can happen at any time in your child’s development. Some kids have symptoms the first time they are exposed to gluten, while others develop symptoms after safely eating gluten for years.

Fortunately, celiac disease symptoms improve quickly when gluten is eliminated from the diet (often in a few weeks to months).

What causes celiac disease?

We don’t know for sure what triggers the immune system to react to gluten and then develop into celiac disease. In some people, the disease has been linked to other health conditions, including Turner syndrome, autoimmune thyroid disorder, Addison’s disease, rheumatoid arthritis, microscopic colitis, Down syndrome, diabetes, Williams syndrome, thyroid disorders and selective immunoglobulin IgA deficiency. In addition, a rash called dermatitis herpetiformis is associated with intestinal gluten.

Unfortunately, there is no cure (other than avoiding gluten), although researchers are working on developing enzyme pills to help with the digestion of the toxic part of gluten that causes intestinal damage.

Celiac disease tends to run in families, so if there is a family history of celiac disease, children may have a higher risk of developing it. If one child is diagnosed with celiac disease, his or her siblings, parents and grandparents should be tested too, as they may have the disease but no symptoms.

Celiac disease that goes undiagnosed or untreated can lead to weight loss, loss of calcium and bone density, reproductive issues, lactose intolerance, dental enamel disease, seizures and increased risk for small bowel cancer and lymphoma.

How can I know if my child has celiac disease?

Diagnosing celiac disease usually begins with a blood test that measures the level of antibodies to gluten and other proteins in the lining of the intestine. If high levels of these antibodies are found, your pediatrician will likely order a biopsy of the small intestine and send it to a laboratory for testing. This small intestine tissue sample is obtained during a procedure called endoscopy, in which a long, thin tube (endoscope) is inserted through the mouth and stomach into the small intestine. Note: In younger children or those with IgA deficiency, it is harder to use these serologic tests.

There is also a genetic test that can screen individuals at risk for celiac disease (genes with HLA DQ2 or DQ8 genes).

What foods to eliminate or avoid

If your child is diagnosed with celiac disease, your pediatrician will advise you regarding which foods he/she can eat and which to avoid. Because these dietary changes can also affect the rest of your family and your daily routine, we suggest that you meet with a nutritionist for further guidance.

In general, your child should stay away from foods that contain the following gluten-related ingredients. NOTE: Because there is currently no law requiring food manufacturers to list gluten on food labels, avoiding gluten can be really hard to do in some cases.

  • wheat, barley rye, and related grains should be eliminated
  • bouillon and broths
  • breading (such as the coating on breaded chicken cutlets, etc.)
  • brown rice syrup (often made from barley)
  • cake flour (made from wheat)
  • caramel color (occasionally made from barley)
  • communion wafers
  • couscous
  • creamed or breaded vegetables
  • dextrin (a rare ingredient that may be made from wheat—maltodextrin is OK)
  • dry roasted nuts (processing agents may contain wheat flour or flavorings)
  • fried chicken
  • french fries (if coated in flour)
  • gravies and sauces (including some tomato and meat sauces)
  • imitation bacon, crab or other seafood
  • luncheon and processed meats
  • malt or malt flavoring (usually made from barley)
  • marinades
  • matzo
  • modified food starch (most food manufacturers now list the source of this ingredient, e.g., modified cornstarch, which is OK, or modified wheat starch, which is not)
  • nondairy creamer
  • pasta
  • salad dressings
  • seasonings (pure spices are OK but check seasoning mixes for gluten-containing additives)
  • some herbal teas and flavored coffees
  • soup mixes and canned soups
  • soy sauce and soy sauce solids (they may be fermented with wheat; don’t use them unless you verify with a dietitian that they’re OK)
  • spreads, soft cheeses, and dips
  • stuffings
  • thickeners
  • udon noodles
  • wheat-free products (many wheat-free cookies and breads instead contain barley or rye flour which contains gluten and other gluten-containing ingredients)
  • yogurts with wheat starch
  • certain 0ver-the-counter medications
  • vitamin, nutritional and herbal supplements
  • toothpaste
  • Play-Doh
  • lipstick products

3 important things to remember

  1. To avoid gluten—and prevent triggering your child’s celiac symptoms—it’s important to carefully read the labels of all foods before you buy them or let your child consume them. Help your child learn to do this, too. When in doubt, the safest thing to do is to assume the product contains gluten and avoid it.
  2. In the U.S., all foods must be clearly labeled if they contain any of the top 8 food allergens, including wheat. However, wheat-free doesn’t mean gluten-free. Some wheat-free products may still have gluten-containing grains like barley and rye in them. Lawmakers are working to make labels easier to understand by requiring companies to identify these “hidden ingredients.”
  3. It’s generally safe for kids with celiac disease to eat oats that come from an uncontaminated source—oats that have been processed in a mill that doesn’t process grains that contain gluten with the same equipment. The label on the package should clearly state if this is the case.

Helping your child cope with celiac disease

What experts know about celiac disease is developing so rapidly that many websites and articles are out of date. To make sure you always have the most current and accurate information, consider joining one of the national celiac organizations (listed below). There are even gluten-free summer camps and special support groups just for kids and teens.

  1. If your child has celiac disease, it’s important to educate the other adults in your child’s life—caregivers, teachers, school nurses, camp counselors, babysitters, friends’ parents—about his/her condition, and to explain the importance of keeping foods with gluten away from your child. With an older kid, teach him/her not to accept foods from others unless they are from someone they can trust to ensure the food is gluten-free.
  2. It may be hard for your child to adapt to a gluten-free diet and for you to make the necessary adjustments. But over time, you and your child will get to know which foods are safe and which are off-limits, making it easier to find meals, snacks and ingredients that won’t cause celiac symptoms.
  3. Fortunately, celiac disease symptoms improve quickly after gluten is eliminated from the diet and kids make the transition to gluten-free eating. At WHP, we feel that strong family support is especially important to help kids with celiac disease stay motivated to remain gluten-free.

Helpful resources to learn more about celiac disease

There are several websites and support groups which are available to help you navigate through the lifestyle changes required for children with celiac disease. Here are some suggestions:

If you think your child may have celiac disease, please come see us

If your child is showing signs of celiac disease, please make an appointment with Westchester Health Pediatrics to come in and see one of our pediatricians. We will meet with you and your child, review the symptoms, possibly order some tests, and together with you, decide on the best course of action which may include avoidance of gluten.

Whatever the diagnosis, our #1 goal is for your child to get answers and feel better as soon as possible. Whenever, wherever you need us, we’re here for you.

Make an appt

By Mason Gomberg, MD, pediatrician with Westchester Health Pediatrics, member of Northwell Health Physician Partners

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About the Author: ML Ball