Before having kids, the phrase “food allergies” brought to mind images of peanuts, swelling, and Epi-Pens. But after discovering that our son had Food Protein-Induced Enterocolitis Syndrome (FPIES), food allergies meant something quite different. In our case, “food allergies” meant oats, vomiting, and potentially a hospital visit.
This article will explain our experience with FPIES and hopefully provide some tips and resources to parents with children who have FPIES. When I first googled FPIES, I was horrified with the stories I read. If you are looking for a less horrifying but still educational article about FPIES, I would read this Q&A, which I will be quoting throughout the rest of this article.
What is FPIES?
FPIES is an intestinal allergy to foods, where the stomach rejects proteins in the food it is allergic to and expels them. The tricky thing about FPIES is that the symptoms don’t set in until 1.5 to 2 hours after the food is digested. This means it is hard to figure out what food triggered the allergy since the reaction occurs hours later.
What foods are common triggers?
“The most common FPIES triggers are traditional first foods, such as dairy and soy. Other common triggers are rice, oat, barley, green beans, peas, sweet potatoes, squash, chicken and turkey.” This was true with our experience- we had our first clue to our son’s allergies when he was five months old. Our pediatrician recommended introducing infant cereal, and we chose to introduce oat cereal first. Our baby happened to be sick with a cold at the time, and so when he vomited several hours later, we assumed it was from the congestion. Two weeks later, when we tried the oats again, he had the same reaction. This time, we caught on to the pattern and didn’t introduce oats again.
What are the symptoms?
“Symptoms typically only involve the gastrointestinal system, and other body organs are not involved. FPIES reactions almost always begin with delayed onset vomiting (usually two hours after ingestion, sometimes as late as eight hours after). Symptoms can range from mild (an increase in reflux and several days of runny stools) to life threatening (shock).” This makes FPIES tricky because the vomiting could be confused with food poisoning or the flu. With our son, he would vomit until everything had been expelled from his stomach (sometimes lasting up to an hour) and then he would have diarrhea. The good news was that after a few hours, he was able to eat and drink again so he wouldn’t get too dehydrated.
How is FPIES diagnosed?
“FPIES is difficult to diagnose, unless the reaction has happened more than once, as it is diagnosed by symptom presentation.” This means that the skin prick test that they do for other allergies doesn’t work for FPIES, as the allergy is digestive based. In our case, the doctor still performed a skin test to see if our son had any other types of food allergies. What helped the doctor diagnose our son was the fact that after his reactions to infant cereal, we later introduced Cheerios (which contain oats) and it produced the same affect.
How is FPIES treated?
Since FPIES is an intestinal allergy, that means that Epi-Pens won’t help. Generally treatment is to avoid the triggering food at all costs. In the event that your child does react, the worst case scenario is that you have to take your child to Urgent Care or the ER for IV fluids. In our case, once we knew the trigger food, we were able to successfully keep him from eating oats until he outgrew his allergy.
How do I know if my child has outgrown FPIES?
“Together with your child’s doctor, you should determine if/when it is likely that your child may have outgrown any triggers.” After diagnosing our son at 11 months, our doctor advised that we come back when he had turned 3 and they would do an office food test. This meant that we would come back and feed him oats at the doctor’s office and wait to see if he had a reaction. We never had a chance to do this option as someone accidentally fed our son oats without our knowledge when he was 19 months old and he did not have a reaction. While I wouldn’t recommend doing a home test for outgrowing allergies, it produced the same result.
How do I help my child avoid trigger foods?
1. Check all food labels! Especially with grains, milk, and soy, you would be amazed with how many foods contain these ingredients. We discovered that about 75% of cereals contained oats. Not to mention breads, crackers, and cookies.
2. Tell all caregivers. We created a short letter that we gave to all babysitters, relatives, and caregivers so they would be aware of our son’s allergy. If you would like to print it off, you can download it here. Along with the letter we provided safe snacks for our son to eat while we were gone.
3. Segregate foods. We continued to eat foods with oats even though our son could not. While we tried to keep cereals with oats out of reach, I wish we had been more vigilant about segregating foods. My recommendation is to create specific spot in a cupboard or pantry shelf for all foods that can trigger your child’s allergies. Label it “Not for [Child’s Name]” so there is no confusion. Even friends and family that knew about our child’s allergy would forget to check labels or just plain forget about the allergy all together. While this was frustrating, I had to remind myself that these caregivers had never seen my son’s allergic symptoms. I’m sure if anyone had seen him vomit repeatedly until he was dry heaving, they would remember from then on about his allergy.
4. Be vigilant. I have now become one of those parents who will not give food to other children without checking with their parents first. After living with a child with allergies, I can’t tell you how stressful it is for a parent to find out someone gave their child food without their knowing. A common toddler snack like Cheerios led to devastating consequences for my son, even when parents assumed that it would “be fine.”
While food allergies are stressful, they can be accommodated and even outgrown! Our son now loves eating foods with oats, and we love not having to worry about his allergy.