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The Nutritionist’s Role in Recognizing and Treating Food Protein Induced Enterocolitis Syndrome (FPIES)

Food Protein-Induced Enterocolitis Syndrome (FPIES) is an uncommon, but very serious pediatric food allergy affecting the gastrointestinal (GI) tract. FPIES triggers an immune response in the GI system to one or more specific foods and is characterized by often-profuse vomiting and diarrhea. In the most severe cases, FPIES can present a medical emergency as vomiting and diarrhea lead to dehydration and shock.

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Nutritionists are an important component of a long-term, comprehensive FPIES management plan that includes food trials, elimination diets, and nutritional care plans.

Although cases of FPIES are quite rare, as awareness of the condition grows, pediatric nutritionists are making it their business to understand what FPIES is, how it is treated, and what resources are available for learning more about providing care to young patients suffering from FPIES.

A Nutritionist’s Guide to Recognizing and Treating FPIES

Nutritionists involved in treating pediatric patients with FPIES must have a firm understanding of the allergy, including its associated risk factors, symptoms, methods of diagnosis, and treatment options.

What foods are associated with FPIES?

It seems that breast milk is the best choice for avoiding FPIES in infancy. Regardless of the mother’s diet, FPIES reactions almost never occur in babies that are breast-fed exclusively.

FPIES can be triggered by any food, although the most common culprits are dairy and soy. Most symptoms begin early in life, usually after introducing milk- or soy-based formula. However, it is also often triggered during the introduction of first foods—rice, oats, barley, and similar grains.

Other foods commonly recognized as FPIES triggers include:

  • Peas
  • Green beans
  • Squash
  • Sweet potatoes
  • Fish
  • Chicken
  • Turkey

In most cases, FPIES reactions are triggered by just one or two specific foods.

Who’s at risk?

Babies and toddlers being introduced to new foods are at the highest risk of FPIES. Encouragingly, most children outgrow the allergy by the time they enter preschool at 3-4 years old.  

A number of studies have found that FPIES is slightly more common in boys than it is in girls.

According to the American College of Allergy, Asthma, and Immunology (ACAAI), some 40 to 80 percent of children with FPIES have a family history of seasonal allergies, food allergies, and/or eczema.

What are the symptoms?

Although FPIES is a food allergy, the body’s response to it is quite different from other food allergies, which tend to cause reactions within minutes or even seconds of coming into contact with the offending allergen.

With FPIES, symptoms do not present themselves so quickly and may not occur for two to three hours after the child ingests the trigger food. With such a delayed reaction, it isn’t always clear to parents and pediatricians what might have brought on the allergic reaction. This has made FPIES notoriously difficult to diagnose.

Some children experience rather mild symptoms, such as runny stools or an increase in reflux. Children that suffer from the more serious, and even life-threatening symptoms - perfuse vomiting and diarrhea – are at risk of dehydration, which in severe cases leads to lethargy and shock.

It is important that parents are aware of the warning signs of shock that may stem from severe dehydration:

  • Dizziness, weakness, or fainting
  • Cool, pale, clammy skin
  • Weak, fast pulse
  • Quick, shallow breathing
  • Confusion or anxiety

FPIES symptoms often mimic a severe body infection. Continual ingestion of the trigger food(s) can lead to poor growth and, in infants, failure to thrive (a term used to describe inadequate weight gain or growth). Severe cases may result in hospitalization.

Diarrhea can last for days after ingesting the trigger food(s). However, symptoms eventually subside when the offending food has been removed from the child’s diet.

How is FPIES diagnosed?

Diagnosing FPIES continues to be a challenge for a number of reasons:

  • It is often mistaken for a viral or bacterial infection (a stomach “bug”).
  • Unlike other food allergies, it is not identified through skin-prick or blood tests.
  • Unlike other food allergies, which tend to trigger allergic responses throughout the body, FPIES symptoms are confined to the GI tract.
  • Symptoms may not appear for several hours after the food trigger is consumed, making a link between the food and symptoms difficult to identify.

If FPIES is suspected, an allergist or gastroenterologist will likely review the child’s clinical history and symptoms and recommend eliminating specific foods. An oral food challenge may also be ordered to confirm FPIES. In an oral food challenge, the child is given the suspected food trigger in a controlled clinical environment where the reaction can be safely observed.   

How is FPIES treated?

During a severe FPIES reaction, the child may need to be hospitalized for IV hydration and monitoring. Steroids may also be given to calm the immune reaction.

Once an FPIES diagnosis is made, a physician will continue to provide the child with proper medical attention and monitoring and refer the child to a nutritionist, who will devise a personal dietary plan to ensure the child continues to receive proper nutrition while avoiding the food trigger(s).

Registered Dietician (RD) nutritionists can be key to helping families of children with FPIES with nutritional planning, whether or not an elimination diet is required. RDs also plan and oversee food trials and help families discover new ways to prepare foods using safe-ingredient lists.

And just as importantly, RD nutritionists are there to educate families about label reading, balancing the nutritional needs of children while adhering to a restrictive diet, and how to best manage nutrition as a way to help children thrive despite suffering from FPIES.

FPIES Education and Training for Nutritionists

NutritionED.org is pleased to promote and collaborate with the Food Protein-Induced Enterocolitis Syndrome (FPIES) Foundation, the most comprehensive repository of information on FPIES for families, clinicians, nutritionists, and the general public.
The FPIES Foundation is a non-profit organization committed to making the lives of children with FPIES and their families easier. The Foundation is also dedicated to providing education, support, and advocacy tools and resources that empower families and the medical community.
Understanding the unique opportunity for children suffering from FPIES to benefit from nutritionist intervention, the FPIES Foundation has compiled resources on a dedicated Nutritionist page on their website.
Just a few of the resources available to nutritionists through the Foundation include:

  • Growth charts
  • Food journals (downloadable templates, examples, and tutorials)
  • Nutrition data/calorie calculators
  • Cooking/recipes/food products
  • Action plans (emergency action plans, food allergy action plans)
  • Preparation information for in-office food oral food challenges

Free Webinar Opportunity!

Demonstrating its commitment to providing nutritionists with the most up-to-date, comprehensive information available on FPIES, the FPIES Foundation is offering a FREE webinar entitled, “Nutrition Care for FPIES” on October 25, 2016 at 9amPDT/11am CDT/12pm EDT. Registration is required.

Just some of the topics that will be covered in this informative webinar include:

  • What FPIES is and how it is diagnosed and treated
  • How to identify acute and chronic reactions and symptoms
  • Food trials and elimination diets
  • How to monitor and ensure adequate nutrition for optimal growth and development
  • Nutritional considerations for long-term care management

The FPIES Foundation webinar will provide nutritionists with valuable insights on providing nutritional care and planning.

In addition to receiving expert tips and tools for caring for patients and their families living with FPIES, RDs participating in this webinar will receive 1 FREE hour of CPE (1 CEU unit) through the Commission on Dietetic Registration!

RD nutritionists who cannot join in for one of the live sessions can register to receive a link to the recorded webinar.

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