Tips for optimizing nutrition in children living with FPIES or EoE

Linda Kirste, RD

Linda Kirste is a Registered Dietitian. She works at HealthLinkBC where she operates the Allergy Nutrition Service ― a tele-practice-based service that provides nutrition education, as well as counselling and follow-up care for residents of British Columbia with food allergies.

This month, Linda offers some tips for families managing FPIES and EoE, conditions that lead to digestive reactions to foods. Thanks go out to Vancouver allergist Dr. Joanne Yeung, who kindly reviewed this article.

Linda begins by describing FPIES, and the nutritional management of this condition below, and then turns to EoE.

What is FPIES?

Food Protein-Induced Enterocolitis Syndrome, or FPIES, is a gastrointestinal allergic condition. FPIES causes bouts of vomiting after a trigger food is eaten.

FPIES does not typically include skin or respiratory signs of an allergic reaction (such as hives, skin itching and redness, or breathing problems). The most common foods to trigger FPIES reactions are milk, soy, rice, and oats. Some children have other trigger foods. It isn’t uncommon for a child with FPIES to have more than one trigger food. Unlike anaphylaxis and other immediate-type allergic reactions, FPIES does not involve IgE antibody production by the immune system. As a result, FPIES is sometimes described as a non-IgE mediated food allergic condition.

An FPIES reaction usually starts between one and four hours after the trigger food is eaten and may last as long as 24 hours. In a few children, symptoms include a drop in blood pressure. (Faintness, weakness or passing out are signs of a drop in blood pressure.) This requires immediate medical attention.

While it isn’t thought to be a common condition, it isn’t clear how many babies and young children in Canada have FPIES. One estimate suggests 3 out of every 1,000 (0.3%) babies have FPIES. The condition usually develops between two and seven months of age, and is often outgrown by school age. FPIES should be diagnosed by a medical doctor and is based on a carefully collected and interpreted medical history. While there are no specific tests for diagnosing FPIES, a doctor may recommend some tests to look for other possible causes for a baby’s symptoms.

Trigger foods should not be offered to the child with FPIES until medical assurance has been given that the food allergy has been outgrown. When a child is likely to have outgrown their FPIES, they may be offered an oral food challenge to prove they can now eat their former trigger food.

An oral food challenge is an allergist observed ingestion of a food in a specialized medical setting. During the oral food challenge the child is monitored for FPIES symptoms. If the child does not react during the oral food challenge, the food can be added back into their diet, and enjoyed together with other family members.

Tips for families managing FPIES

What should I do if I think my baby had an allergic reaction to a food?
If you think your baby had an allergic reaction to a food, stop serving that food and talk to your baby’s doctor or nurse practitioner. If you think your baby showed signs of a possible FPIES reaction, share this with your baby’s doctor. The symptoms of FPIES are sometimes confused with the signs and symptoms of a viral infection. If you and your baby’s doctor are unsure of your baby’s diagnosis, a referral to a pediatrician or pediatric allergist may be helpful.

How should I manage my baby’s diet after the FPIES diagnosis?
Watching your baby have a reaction to a food can lead to feelings of apprehension about feeding and introducing new foods. If you recognize these feelings in yourself, reach out for help from your baby’s health care team. They can help you develop a plan for feeding your baby. Having a plan for moving forward can boost your confidence.

Such a plan may include:

A set of specific steps to take, if your child has another FPIES reaction.
A suggested order for introducing new foods to your baby’s diet. The order should place emphasis on first introducing the foods that, in general, are less likely to trigger an FPIES reaction.
A customized list of iron-rich foods to introduce to your baby starting from 6 months of age, as babies at this age need additional sources of iron.
Follow-up visits to review how the plan is working, and to make adjustments as needed.
If your child’s FPIES is triggered by milk, your child’s care team can offer a customized nutrition plan ahead of your child’s first birthday – a time of changing nutrient needs. This plan should focus on helping your child meet their increased needs for nutrients such as calcium and vitamin D.
A scheduled oral food challenge, when your child is ready, to confirm they have outgrown their FPIES.

What is EoE?

Eosinophilic Esophagitis, or EoE, is a gastrointestinal allergic condition that causes chronic inflammation of the tissue that lines the esophagus. Shaped like a tube, the esophagus connects the mouth with the stomach. EoE can affect children and adults alike. EoE inflammation may be partly triggered by food allergens.

Signs and symptoms of EoE in children include difficulty eating, vomiting, abdominal pain, and growth problems. Older children may complain of food getting stuck on the way down after swallowing, chest pain and/or heartburn. EoE is more likely in children who have other allergic conditions such as atopic dermatitis (eczema), food allergies, asthma, and hay fever.

EoE signs and symptoms are difficult to link to any specific foods, as the inflammation is chronic and persists between meals. Diagnosing EoE and identifying whether food allergens are playing a role takes many steps and is helped along by having a number of health care specialists on a child’s care team. They may include a pediatric gastroenterologist, allergist, dietitian, and a nurse.

Many children with EoE do not have specific food triggers. In children with food triggers, there are a few foods that most commonly play a role. These foods, in order of likelihood, are milk, wheat, egg, soy/legumes, peanut/tree nuts, and fish/seafood. Each child with EoE may have their own set of trigger foods.

In EoE, skin prick and food-specific IgE antibody blood tests are not adequate for identifying a child’s food allergens. IgE antibodies produced by the immune system are only partly responsible for the inflammation. To help detect a child’s trigger foods, the child’s care team may recommend the temporary removal of either, the top two, four or six of the most common foods all at once, or in a step-wise fashion. After the child’s EoE symptoms have improved, each removed food is added back one-at-a-time to see which ones will trigger the inflammation to return.

The child’s health care team should be involved at each step to monitor and take note of the child’s response and to ensure they are still getting the nutrients they need. The end goal is to clarify the foods responsible for triggering the EoE symptoms. Any foods that do not trigger symptoms should be added back and remain part of the child’s diet.

Tips for families managing EoE

The dietary restrictions for EoE can feel disruptive and overwhelming at first. Meal planning, grocery shopping, meal time, and eating out are all affected. Developing the knowledge and skills for managing your child’s diet can take time. Try to give yourself, your child, and the whole family time to adjust and reach out to your child’s health care team when you have questions or concerns, or need more help.

Here are a few additional tips:

Your child’s care team is interested in how you and your family are coping. Share your challenges as well as your successes. These conversations can lead to additional ideas on how best to support your child and your family.
Consider joining a non-for-profit support group like the American Partnership for Eosinophilic Disorders (APFED). APFED hosts a website, apfed.org, which has a range of resources available to members, from a newsletter to an online community.
Ask your child’s dietitian if they can be available to you by phone, or whether it would be possible for you to have visits between EoE clinic visits. Your child’s dietitian can offer tips and pointers to help you navigate through challenges as they come up, such as planning for a family vacation.
Consider exploring new foods that the whole family can try, with the help of your child’s dietitian. This may help shift your child’s attention from limitations to possibilities. If a new food or recipe didn’t go over well, try another.
Plan to re-review your child’s dietary intake with their dietitian from time to time. Even if your child’s dietary restrictions do not change, their nutritional needs will. Many nutrient intake recommendations change at 1, 2, 4, 9, 14 and 19 years of age. Any possible changes in your child’s growth pattern should also prompt a review.
As your child grows older, they are likely to want to be more independent. Try to prepare for this. As your child matures, let them take on some of the responsibilities of managing their diet. For example, you can give your child opportunities to practice reading and interpreting ingredient lists. Let them help with meal preparation. Older children can help with menu planning for the family and will learn valuable skills along the way.

Thanks Linda for your insight!

To read Linda’s other articles with us, visit our blog section, or click here to read about:

Do you have a question you’d like to ask Linda in the months to come? If so, please send it along to us at info@foodallergycanada.ca.

Tags: Ask the expert, dietitian, EoE, FPIES, Linda Kirste