If your child has recently been diagnosed with FPIES, you may find yourself overwhelmed and confused. Most parents have never heard of FPIES before they are given the diagnosis. You are probably wondering what you should do now. Here is some information to get you started.
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What is FPIES?
Food Protein Induced Enterocolitis Syndrome (FPIES for short) is a rare form of food allergy. Unlike traditional food allergies, FPIES will not show up on a normal allergy panel. It affects the immune system in a different way. Traditional food allergies create what we call an IgE mediated response which is what those tests are looking for. FPIES is considered a non-IgE mediated reaction. (Looking for more information on introducing the top 9 allergens? Check out this handbook).
How common is it?
The incidence and prevalence is unknown, but in the US it is estimated to be about 0.28% (1). It is most common in infants and young children. It is less common in infants who are exclusively breastfed.
Is it hereditary?
The exact cause of FPIES is still unknown. Currently, we do not think there is a genetic factor, however there is a family history of allergy in 40-80% of cases (2).
What does a reaction look like?
FPIES affects the gastrointestinal system and causes diarrhea and vomiting. What makes it different from other food allergies is that there is a delayed response of 2-6 hours (3). This can make it tricky to figure out food triggers, since there is not an immediate response. If left untreated, the vomiting and diarrhea can lead to dehydration and shock, sometimes requiring hospitalization.
Additional symptoms include appearing pale, lethargy, abdominal distension, and appearing blue due to low levels of oxygen in the blood. In children who go undiagnosed and have multiple episodes of vomiting and/or diarrhea, you may also see weight loss or failure to grow at expected rates.
How do you diagnose FPIES?
There is no simple test for diagnosis. Generally diagnosis depends on reported history and symptoms (3). In some cases, doctors may do an oral food challenge in a controlled setting, but often this isn’t necessary. Because FPIES is rare and the symptoms are quite common, often the diagnosis is delayed. Many children are only diagnosed after ending up in the emergency room due to dehydration.
Is there any treatment for FPIES?
The only treatment is strict avoidance of food triggers. If a child ingests an allergen, they may require hydration at a hospital. The good news is that children usually outgrow this allergy, usually by age 3 or 4.
Young infants may need to be exclusively breastfed or offered a hypoallergenic formula, similar to ones offered to babies with milk protein allergy,
Common Food Triggers
Please note that any food can be a trigger. Some children will react to 1-2 foods, others may react to many. Every case is very individualized. Milk and soy are the most common FPIES triggers.
- Other Grains
FPIES Food Introduction
It can be very helpful to keep a food/symptom log as you are introducing new foods, especially since the reactions are delayed. You can continue to offer foods that you know your child tolerates while offering new foods. Continue to avoid any foods that your child hasn’t tolerated (even if they are on the list below). Introduce 1 food at a time every 5-7 days. Monitor for tolerance before adding a new food. Once you know that your child can tolerate that food, you can move onto the next.
Lower Risk Foods:
- Vegetables: broccoli, cauliflower, parsnip, pumpkin, turnip
- Fruits: avocado, blueberries, peach, plum, strawberries, watermelon
- Grains: quinoa cereal, miller (look for iron-fortified when available)
- Proteins: lamb, tree nut butter and seed butters (sunflower/pumpkin)
- Fats: avocado oil
Moderate Risk Foods:
- Vegetables: carrot, chard, green bean, spinach, squash, white potato
- Fruits: apple, orange, pear
- Grains: barley cereal, corn cereal, grits, wheat (look for iron-fortified when available)
- Protein: beef, peanuts and other legumes
- Fats: canola oil, coconut oil, olive oil
Higher Risk Foods:
- Vegetables: green pea, sweet potato
- Fruits: banana
- Grains: buckwheat, rice, oat (look for iron-fortified when available)
- Protein: poultry, fish
Just because something is on the higher risk food list doesn’t mean that your child will react to it (just as a food on the lower risk doesn’t necessarily mean it’s safe).
Krystyn Parks is a Registered Dietitian and Lactation Consultant who specializes in feeding children. She has a Master’s Degree in Nutritional Science from California State University Long Beach. She is an International Board Certified Lactation Consultant and has been registered with the Commission on Dietetic Registration since 2013.