This month, we are focusing on learning more about FPIES, the non-IgE mediated form of food allergy you might not know a lot about. We hear from I-FPIES, an international FPIES association that is dedicated to improving the quality of life for those with FPIES, and we hear from a mom who has two children, one with food allergies and one with FPIES and her experiences.
FPIES: The Food Allergy You’ve (Probably) Never Heard Of
Contributed by I-FPIES
Imagine feeding your baby rice cereal for the very first time. Fast forward two hours later to episodes of vomiting so severe that they leave your child pale, lethargic, and showing signs of shock. Your pediatrician suggests stomach flu, yet the scenario repeats itself with oats, this time landing your child in the emergency room. This is how the journey begins for many children suffering from Food Protein Induced Enterocolitis Syndrome (FPIES).
What Is FPIES?
FPIES is a severe non-IgE reaction in the gastrointestinal system. Unlike most food allergies that produce immediate reactions such as swelling and hives, FPIES reactions are characterized by delayed, profuse vomiting, lethargy, diarrhea, and even shock. The most common triggers in North America are milk, soy, and rice, but any food can cause an FPIES reaction.
Currently, FPIES is a poorly understood condition, and many frontline providers such as pediatricians and Emergency Department professionals are unable to recognize and diagnose the syndrome. Unlike common food allergies, standard skin and blood testing are routinely negative in FPIES patients. There is currently no cure or standardized treatment. While FPIES resolves in most patients by three years of age, there are individuals that have FPIES into adulthood.
Who Is I-FPIES?
The International FPIES Association (I-FPIES) is a non-profit patient organization dedicated to improving the diagnosis, treatment, and quality of life for those with FPIES through advocacy, education, support, and research.
The organization was launched in 2011 by President and Founder Fallon Schultz. Like many other FPIES families, Schultz had been through a long, confusing struggle to get a diagnosis for her son Landon. Worried and not knowing where to turn, she was shocked to learn that there were no formal channels of support or information available to FPIES families at that time.
Determined to fund FPIES research and raise the level of education and awareness, Schultz and a team of other parents founded the international foundation to unite the medical community and FPIES families. The organization began as the International Association for Food Protein Enterocolitis (IAFFPE) and was rebranded in 2014 as the International FPIES Association.
Making the Invisible Visible
In many ways, the condition is finally emerging from the shadows. In five short years, the volunteer-run I-FPIES has taken the lead on numerous initiatives that are bringing real, impactful change to the FPIES community.
FPIES took a big step forward in October 2016 when the diagnosis code for FPIES became official. Securing and enacting the ICD-10 code was an ambitious initiative for I-FPIES. ICD-10 is the 10th revision of the International Statistical Classification of Diseases and Related Health Problems (ICD), a medical classification list by the World Health Organization. Having a diagnosis code will help the medical community understand just how common FPIES is and lead to vital research funding for this condition.
I-FPIES is also helping to fund groundbreaking research that is beginning to address the many unanswered questions surrounding the condition. Before 2010, scant medical literature could be found on FPIES. Since 2010, 98 articles have been published on the subject, with members of I-FPIES Medical Advisory Board leading that expansion in research. The organization is currently supporting a promising multi-centre study that looks at the genetics of FPIES.
In addition, one of the organization’s primary initiatives is a global effort to educate medical professionals about FPIES and ultimately reduce the amount of time that patients go without diagnosis. I-FPIES partners with national and international health organizations and networks to increase FPIES education and awareness around the world. Schultz and I-FPIES medical advisors have travelled to major food allergy conferences across the globe to educate other medical providers about FPIES. The organization is also establishing international chapters in Canada, the United Kingdom, Germany, Australia, Brazil and beyond.
And 2017 promises to be a breakthrough year for FPIES as the first official consensus guidelines for FPIES will be released. The guidelines are the result of three years of global collaboration led by I-FPIES and including the input of over 40 leading FPIES experts. Once published, they will offer much-needed guidance in the diagnosis and management of FPIES.
Along the way, Schultz has been appreciative of the support and generosity the organization has received from the food allergy community. More and more, non-IgE allergies like FPIES are being included in the broader dialogue on food allergy. The “unknown” food allergy is quickly becoming known with the continued expansion of educational resources, research studies, and global outreach and awareness.
We’re really pleased to be working with Food Allergy Canada to increase awareness about FPIES and support Canadian families. To learn more about FPIES, visit fpies.org.
Personal Story: How an FPIES mom cooks and eats
Contributed by Julia B., a mom with two children, one with FPIES
Everyone asks, ‘so what do YOU eat, then?’ when they want to know how I balance the complicated dietary needs of my two children with my own pantry and palette pleasers.
The truth is, I eat like many other busy mamas who won’t let food go to waste. I eat whatever my kids leave on their plates…
Their plates, which are often set a table place apart (at least), are a daily challenge to fill and catching a ‘food break’ for me, is like waiting for the stars to align.
My kids have conflicting food allergies. My daughter must avoid gluten, cow dairy and soy. My son is allergic to rice, many other grains and some vegetable and meat proteins. He has a condition called Food Protein Induced Enterocolitis Syndrome (FPIES), a food allergy that presents itself after ingested food makes its way into the gut.
The body rejects the food proteins and the result is a non-IgE mediated allergic response. This means epinephrine will not help and symptoms do not appear instantly. In fact, it can take anywhere from one to 12 hours for lethargy, incessant vomiting or diarrhea to begin. These symptoms can lead to shock so it is very important for someone with FPIES to receive IV fluid treatment as soon as possible. The condition often subsides with age and it has been reported that acute FPIES responses can turn into food intolerance. The key is to eliminate all irritant/trigger foods in order for this condition of an immature gut to not give way to other complications. A person can have FPIES to any food and each case is unique. You can build a list of ‘safe foods’ and the only way to test a food, is to feed that food to your child.
Before I had my two beautiful children, I loved to cook. I loved going to every new and exciting restaurant and I went to dinner parties all the time. I imagined how much fun it would be to introduce my children to this lifestyle of food sharing and culture. I was really excited to feed my kids!
Then the FPIES bomb hit. It unearthed FOOD FEAR of the first degree. I now have infant life-saving experience…on more than one occasion.
What came next was fierce advocacy for my kids. Butting heads with some doctors, meeting other doctors that had heard of FPIES but had no patient experience and educating an array of specialists who wanted to know more. I became a resource and the voice of my children’s bellies.
‘But what about MY belly’ I would moan at the weekend farmers market where easy breezy families let their kids frolic in their underpants eating pulled pork brioche, cupcakes and burritos that slop all over the climber in the playground. While my husband was on ‘accidental ingestion watch’ I ran to the waffle, wild blueberry and fresh whipped cream tent and ordered one in a panic. I hid behind a tree and ate it. It went down so fast, I’m not sure I even tasted it. I needed to get back to watching my kids and painstakingly source something they could eat – just popsicles. It was a short visit.
Now, after these last two years, I am a food balancing expert. During toddler naps, I treat myself to pastry. In the kitchen, I split meals into three or four versions on the stove. I carefully manage every piece of cutlery and each drip of water that boiled one thing or another to avoid cross-contamination and make sure my kids have a balanced diet.
I am so proud of my kids, myself and my mission to not deny anyone in my family the foods they CAN eat.
Life is both fragile and robust. It finds a way, and so have I found a way to feed my family. All of us.