Celiac disease and PFD : A guide to navigating both diagnoses
Published by Feeding Matters on May 23, 2024
When a child with pediatric feeding disorder (PFD) is also diagnosed with celiac disease, adjusting to a gluten-free diet can be even more challenging than usual. Keeping a child with PFD fed and nourished can be a full-time job. Seeing their restrictive diet shrink even more can be overwhelming.
Erin Feldman, RD, a dietitian for over 25 years at Cedars-Sinai, has supported countless families in their journey to transition to a gluten-free diet. “I’ve never had a patient come back and say they decided not to be gluten-free. All of our patients are compliant. We help them figure it out,” she says.
Understanding celiac disease
Celiac disease is an autoimmune disorder where ingesting gluten leads to damage in the lining of the small intestine. Gluten is found in wheat, barley and rye. Even traces of gluten prevent nutrient absorption for those with celiac disease. The disease is chronic, and the only treatment is a strict, lifelong gluten-free diet. This includes avoiding cross-contamination, such as double dipping a knife used for bread in a peanut butter jar.
The hardest part of maintaining a gluten-free diet can be avoiding cross-contamination and the many processed food products that contain traces of wheat.
Creating a gluten-free home
Transitioning to a gluten-free home involves more than just changing the food your child eats. Cross-contamination is a significant risk, so many families choose to make the whole house gluten-free when a child has celiac disease.
For some families, going gluten-free is cost-prohibitive or too disruptive for other family members. In this case, families need two of many products and even some appliances — like a gluten-free toaster.
Feldman recommends having separate storage for gluten-free items to prevent mix-ups.
Identify foods your child will eat
It can be a big challenge if your child with PFD and celiac disease eats a limited number of foods, and many of them contain gluten. Feldman recommends identifying foods your child will eat and then finding gluten-free substitutes that are as familiar as possible. “They’re not going to be able to adapt and eat completely different foods. We work with our families to make sure we give them ideas of things that are as close to what they’re used to as possible,” she says.
The good news is that the gluten-free diet fad in the U.S. means new gluten-free products are on the market every day.
Feldman recommends a few tips to help your child adapt:
- Serve the new products with your child’s favorite dips, like ranch dressing or ketchup.
- Involve your child in the food selection and preparation process.
- Make finding substitute products a taste-testing game where you rate the options.
Checking food labels for gluten
In the U.S., nutrition labels list food allergens like soy and wheat, but they don’t list gluten. That makes learning to read labels to identify gluten-free products crucial. Many processed foods contain hidden gluten. “People are surprised there’s gluten in soy sauce or anti-caking agents in shredded cheese,” says Feldman.
Following are some not-so-obvious ingredients to watch out for:
- Salad dressings and marinades can contain soy sauce or malt vinegar
- Cream-based soups often contain flour as a thickener
- Processed meats often contain wheat as a filler and binding mechanism
- Seasoning mixes and spice blends can contain wheat flour as a filler or anti-caking agent
- Modified food starch
- Malt extract, malt flavoring and malt vinegar
- Licorice and similar candies contain wheat
Many hidden gluten byproducts in processed foods don’t exist in a home kitchen. The more you cook from whole ingredients, the easier it is to avoid gluten.
Eating out safely
Eating gluten-free doesn’t mean you have to give up on dining out, but it does require careful planning. There are even gluten-free restaurants in many metropolitan areas.
Some restaurants can accommodate gluten-free requests. Feldman recommends calling ahead during non-peak hours to discuss your needs with a manager or chef. “Ask about their menu and food preparation practices such as using the same oil for french fries and chicken nuggets. You’ll get a good sense when you start asking questions if it’s safe or not,” she says.
Once you’re in a restaurant or hotel, Feldman encourages parents to feel empowered to always ask rather than assume there’s nothing gluten-free. “If there’s nothing on the menu, ask if there’s something they can create from these ingredients,” she says.
Feldman also recommends starting by eating out for breakfast, since foods like eggs, fruit and yogurt are usually gluten-free.
Monitoring nutrient intake
Gluten-free diets can sometimes lack certain nutrients since they aren’t fortified with vitamins and minerals like bread products. Once your child adjusts to a gluten-free diet, you’ll want to be sure they are getting the micronutrients they need. Speak to your provider about adding a supplement if necessary.
Some important nutrients to monitor on a gluten-free diet include the following:
- Vitamin D
- Calcium
- Vitamin B12
- Folate
- Iron
If your child will eat it, consider incorporating naturally gluten-free nutrient-rich foods like leafy greens, nuts and fortified dairy or plant-based milk.
As any parent of a child with PFD knows, transitioning to a new diet is a significant adjustment. With the right approach and resources, families can manage it successfully. “This is a learning curve. You’re not going to be perfect right away. Give yourself grace and patience. With time and support, it becomes more manageable,” says Feldman.
The content in this blog is not intended to substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.