What is FPIES?
FPIES stands for Food Protein Induced Enterocolitis Syndrome. FPIES is a rare non-IgE mediated food allergy and the symptoms are different than other IgE food allergies. An FPIES diagnosis can be extremely overwhelming, confusing, frustrating and taxing. It is important to know you are NOT alone! You need a good team of professionals to help you through the next year or more of your little one’s life to ensure they are healthy and well supported. If you’re looking for more individualized support for your child click here to book an appointment with our paediatric dietitian.
FPIES symptoms are often misdiagnosed as acid reflux, gas, food poisoning or the stomach flu. Common symptoms can include: repetitive vomiting (severe/projectile), repetitive diarrhea, blood pressure changes, dehydration, lethargy, and extreme paleness which many parents call shock syndrome. Often infants and children struggle to meet weight and height goals while dropping percentiles until a non-reactive baseline diet is found.
One common risk factor for FPIES is a family history of allergies. 40-80% of children with FPIES have a family history of allergies, which may be food allergies, environmental allergies, hay fever, and/or eczema.
How is it diagnosed?
FPIES is diagnosed by a medically supervised oral challenge test. This test is the most definitive test diagnostically thus far for FPIES. An oral food challenge test happens when the suspected food is given to the child in a controlled environment. However, a clinically supervised oral food challenge is not often needed if the doctor has excluded alternative illnesses and the medical history is consistent with FPIES. This is different than IgE allergies which can be diagnosed through a skin prick test, IgE blood test and/or an oral challenge test. There have been recent studies to try to determine if an atopy patch testing (APT) is effective in diagnosing FPIES, as well as predicting if the problematic food is no longer a trigger. The outcome of APT may determine if the child is a potential candidate for an oral food challenge (OFC). APT involves placing the trigger food in a metal cap, which is left on the skin for 48 hours. The skin is then watched for symptoms in the following days after removal. Please be sure to consult your child's doctor to discuss if APT is indicated in your situation.
Common FPIES Allergens
Soy, cow milk, barley, oats, corn, rice, potatoes, squash, string bean, tomatoes, banana, tree nuts, fish and shellfish, beef, and chicken. Most FPIES kiddos only react to 1-2 allergens however there are some kiddos that have multiple FPIES triggers or 1-2 FPIES triggers plus some IgE food allergen triggers. It is important to work with a pediatric dietitian that has experience working with kiddos with FPIES as it can be challenging to tease out what is an FPIES trigger and what is an IgE trigger.
Reaction time from the onset of reaction is typically 2-4 hours after ingestion but symptoms can last for a couple days.
Pattern of reactions:
The classic pattern of an FPIES reaction is when a healthy infant or child develops symptoms shortly after ingesting a food. This typically happens around 4-6 months of age when solids are first given. It is important to mention that sometimes there is no reaction the first time a food is trialed but a reaction occurs on the second, third and fourth time. There is typically a delay of 2-3 hours before onset of symptoms however in some little ones it can be longer. Common symptoms are: severe and repetitive vomiting and/or diarrhea, blood and mucous in stool he child may appear very ill, sleepy (lethargic), and/or may become very pale or blue. If seen by a doctor, your child may show signs of low blood pressure, dehydration, and may have blood tests that mimic an infection (sepsis); which in some cases can lead to sepsis-like shock. Many infants who are eventually diagnosed with FPIES are initially suspected to have a severe infection or sepsis.
In formula or breast-fed infants you may notice increasing instances of vomiting, diarrhea, blood and/or mucous in stool, poor growth, and/or possibly progressing symptoms similar to an illness mimicking a severe total-body infection. These all are the most common signs of an FPIES reaction.
Treatment of FPIES can be extremely frustrating and challenging for parents as finding a non-reactive baseline diet can take time. There is not one diet that fits all FPIES kiddos which can be frustrating and overwhelming for parents. Many families will try the "Total Elimination diet" to see if that helps alleviate symptoms. For some if cow's milk or soy are FPIES triggers it helps with reduce symptoms but not fully if there are other triggers. The TED diet is definitely a good place to start when it comes to unknown food reactions. When it comes to FPIES is no way to find FPIES triggers without an oral challenge. It is important to know the majority of kiddos will outgrow their FPIES trigger foods by 3-5 years of age. However, it is crucial that you work closely with your family physician, paediatrician, paediatric allergist, and registered dietitian. To ensure that your child is able to meet their developmental milestones, follow their growth curve, and are not missing out of vitamins and minerals their bodies need to be healthy. Are you looking for support to work on finding your little one’s safe foods in a supportive environment? Look no further I can help you with this.
Formula vs Breastfeeding:
The long debate has always been formula versus breastfeeding in infants with food allergies. This comes down to parents’ preference and perseverance. I always tell my patient “fed is best.” Whatever way you are able to give your little one the nutrients they need that works best for your family is the best approach. I have had parents tell me that specialists have told them you cannot breastfeed a little one with FPIES. You most certainly can breastfeed an FPIES infant but it can be a lot of work as it is a lot of trial and error until you find a base diet that your little one is able to tolerate. Often mothers I work with start with safe foods, typically 1-2 foods for their base diet and these foods are eaten for breakfast, lunch, supper and snacks. This 1-2 food diet can be for weeks until we are able to pass another food. Finding this non-reactive base diet can be frustrating, time consuming, and a challenge. I find once I help my mommas I work with find that non-reactive base diet they breathe a big sigh of relief.
If milk is an FPIES trigger one of the very first questions I get asked is if almonds, hemp and/or oats are not allergens of FPIES triggers can I give my child one of these milk alternatives instead. For any little ones under age 2 milk alternatives are not recommended as they do not have enough fat and/or calories for brain development in little ones. If your child has an IgE allergy to milk or milk is an FPIES trigger you will want to continue breastfeeding, pump, and/or formula. Again, this is where working with a Registered Dietitian is so important so they are able to guide you through these steps. If you are looking for a registered dietitian please click here to book online.
The prevalence of FPIES from studies classify FPIES to be a rare food allergy syndrome. However, cases are increasing and researchers are trying to determine if it is actually becoming more common or if specialists are getting better at identifying it sooner. Most paediatric allergists I have spoken to have mentioned they believe FPIES is quite rare and that most of their patients actually have Food protein-induced allergic proctocolitis (FPIAP).
If you are reading this blog and think your child may have FPIES ask your family physician for a referral to a paediatric allergist or paediatrician that has experience with FPIES. Your next step after being formally diagnosed will be to find a paediatric dietitian that works with FPIES kiddos. If you live in Canada, with the exception of PEI, and are looking for a Registered Dietitian, I am able to see you virtually so please book an appointment. Please continue to follow me as my next blog will be on FPIAP, followed by a blog on milk alternatives!