ABC News featured a story on a boy named Tyler with FPIES – that is, food protein induced enterocolitis syndrome. The boy had been sickly and weak for years; doctors were mystified. Eventually that one needle-in-the-haystack specialist was found who finally had an answer: A diagnosis of FPIES. The boy had struggled against years of unchecked, untreated, undiagnosed inflammation from foods that were not triggering classic allergy reactions, but were triggering chronic, painful, and debilitating immune reactions of another sort. The problem? Nobody ever bothered to look for these other reactions.
The story hit all the usual notes that make for TV you want to watch: Trauma, drama, suffering, heroic efforts, then finally, resolution. But truth be told, FPIES shouldn’t progress to a point where it impedes a child for so long or so deeply. Some lab tests and clinical signs can lead you early on in the right direction. How early? Think neonate – that is, a newborn, age 0-30 days old. You can detect if there’s trouble this early, even without the blood draws, scans, painful prodding and poking, or multiple odysseys to specialists to find out. The ABC news story spoke more to medical tunnel vision, than it did about a true medical mystery!
Many physicians, even gastroenterologists and allergists, overlook immune reactions to foods that are active in FPIES. Though this is changing, it can’t change fast enough: Many still believe that classic allergy reactions – hives, stinging and tingling, or swelling throat – are the only relevant immune reactions to foods, or that anything different can justify diet changes for a child. But as the ABC news piece showed, this is definitely not true.
Recently created FPIES diagnosis codes (see pp 23-25 here) can change that. Before these were added to diagnostic manuals that doctors and health insurers use to code and cover care, IgE reactions were widely considered to be the only valid reactions to foods. Some codes vaguely covered food intolerance symptoms, and a lactose intolerance code has been available for years (a different problem altogether). This left a lot of kids like Tyler undiagnosed and untreated. The new codes help doctors recognize that immune systems have more than one way of reacting to food, if they are reacting at all (which they shouldn’t). If your child has FPIES symptoms, there are paths to improvement that you can begin right away, and your health care provider can now code the care accordingly, so it can be recognized by your health insurer.
I began working with this in my pediatric nutrition practice before it was called FPIES. My own son, born in 1996, presented immediately with inexplicable symptoms – classic FPIES, but nobody knew that at the time: Projectile vomiting after feeding that left him limp, flaccid, and pale – and even unconscious for a few seconds on one occasion (talk about being a terrified new mom!). He had explosive, runny, liquid, mucousy stool, 8-12 times/day, even though he was breast fed; allergic shiners at his eyes; relentless crying and colic; eczema flares up and down his body; thick cradle cap. Though I’d completed my graduate and undergraduate degree trainings and my registration status as a dietitian years before, I had never heard of anything like it, even during my stint at WIC clinics where I saw plenty of babies. Friends and family with babies of their own hadn’t either. By the time he was 8 months old, we’d rotated through breastfeeding, breastfeeding on a carefully restricted diet, hypoallergenic formulas, and then finally settled on a homemade goat milk formula that I felt confident creating myself, as a trained dietitian. It worked like a charm for him, and has for many babies in my practice since. But, it doesn’t always turn out so easy. The good news is, there are more tricks to try.
Our pediatricians were non-plussed, and didn’t ponder food intolerance or allergy at all, even as my son started to slide down the growth chart before he was two months old. They offered semi-elemental formula, which gave only mild improvement and created other problems – like stark (as in, no stool x 12 days) constipation. When I asked for an allergy referral in his first year, I was told “babies can’t have allergies.” They didn’t wonder why breast milk would not be tolerated by a baby. One physician even told me I “over-nursed” him – which was especially silly, since my son had dropped from 45th to 10th percentile for weight between his birth and age six months.When the allergist found him to have several IgE reactions, he wearily told me my son would surely grow up with asthma and severe food allergies. I refused to believe it (and it didn’t come true)!
It was plain that this baby of mine had inflammation in spades, and that his gut was part of the puzzle – but why? This question is how my pediatric nutrition practice got started by 1999. How could a baby who is born at a healthy weight, with perfect Apgar scores, after a healthy term pregnancy, and a natural, drug free, vaginal delivery – become so inflamed? It was as if he was on fire all the time, just screaming, in seeming agony from the inside out. How could this be thought of as normal, or so inscrutable to smart physicians everywhere?
Of course, it isn’t, and there is a lot you can do. Your baby needs and deserves to be comfortable, and so do you! No need to wait for years for answers, or search for specialists far and wide. If you see FPIES symptoms in your baby, no matter how young, you can step in.
1) Change the protein source. We all know that breast milk is a perfectly-matched-for-us blend of human casein, whey, lactoferrin, and other protein molecules that modulates the immune system, nourishes the intestinal wall in unique ways, encourages growth of an optimal gut biome, and aids uptake of nutrients. If FPIES symptoms are active this early and your baby is breastfed, consider removing usual trigger proteins from your own diet, like cow’s milk/dairy, soy, nuts, gluten, eggs, or corn. Experiment with rotating foods, find what is problematic. Be sure to replace any foods withdrawn with nutrient dense alternatives. As a nursing mom, your nutrition needs are high. Eat plenty of protein, minerals, and healthy fats/oils. Eat organic; GMO foods have been linked to increased allergy, and this is the last thing an FPIES baby needs.
2) If your baby is formula fed, or if breastfeeding is a complete bust, know that your baby may feel better with a semi-elemental formula like Alimentum or Nutramigen. If that is a no go, FPIES symptoms may respond better to elemental formulas instead, like Neocate Infant or Elecare (if they don’t, there’s a troubleshoot path for that too). These are not organic options, but some manufacturers are trending toward non-GMO ingredient, such as Neocate.
3) Consider goat milk infant formula or make your own. This was the charm in my son’s case, and can be worth a try. If making your own, use molasses, not corn syrup, for carbohydrates; your baby may or may not be able to tolerate brown rice syrup in this role. Add multivitamin drops for infants once daily; add healthy brain fats like coconut oil or flax oil. Ultimately, you may need to use elemental free amino acids as protein source and build your own “modular” formula. This requires oversight and guidance from a licensed dietitian or knowledgeable MD. I have used this method in my practice for infants with success – it can work.
4) Rule out bowel infections. Research into the human gut biome is rapidly growing, and it’s clear that newborns with an addled gut biome have more trouble for allergies, FPIES, feeding, growing, immune function, and even learning and brain development. Good gut bugs keep pathogens out, trap toxins, communicate with the immune systems, protect the gut lining, and aid digestion. In babies, the intestine is immature and permeable, and the job of the gut biome is to help it mature. This is pivotal for aiding digestion and absorption of nutrients, is critical in setting up normal immune function, and mitigating allergies and asthma later on. Most any gastroenterologist will check for the more nasty bacteria species with a stool culture. But this often skips FPIES culprits like fungal (yeast) species, which can be especially disruptive to a newborn gut when present to a dominant degree. A functional medicine comprehensive digestive stool analysis will look at all sorts of microbes, from parasites (think microscopic ones like amoebas or protozoans that are impossible to culture) to the full line up of pathogenic bacteria. This test also profiles beneficial flora, so you can see if important helper bacteria are colonizing your baby’s gut or not. I use this test often to redirect the biome for babies. The test also measures stool for markers of inflammation and good digestion, without drawing blood, and this directs my choices for safe foods or supplements also.
5) Check gluten. A negative celiac test does not mean your child can safely eat gluten. It just means there is no celiac disease. At the very least, have your team do an IgG antibody test specifically for gluten and gliadin. These are usually left out of celiac test panels, so it is common for children to be told to continue eating gluten when they should not. Eating gluten when the immune system is reacting to it can deeply disrupt the gut’s ability to absorb other nutrients, and can trigger autoimmune reactions to brain and other tissues. There are detailed gluten sensitivity panels available that can check several immune responses beyond IgG and IgE, to thoroughly categorize how your child’s body responds to wheat.
6) For children past 18-24 months of age, run a full ELISA IgG food antibody panel. These tests have been available for years from specialty labs like Alletess, Genova Diagnostics, MetaMatrix, or Great Plains Labs. One tube of blood, or even blood spot finger prick samples, is used to assess over 90 foods for this type of reaction – a small sample goes a long way, and you don’t need to pull several tubes of blood out of your child. Some GI doctors are now using ELISA IgG tests also, but usually only do a few foods with more blood pulled. If multiple positives result on the panel, don’t panic – start with the most frequently eaten foods and engage alternate protein sources. I do this in my practice routinely, and add supports to help build a healthy intestinal wall as well.
Depending on findings from these labs, I help families create a plan that engages foods, formulas, supplements, probiotics and rotation diets safely. There are many options to safely redirect a child’s intestinal environment, so that it can function as intended and develop peacefully, allergy-free, or with fewer allergies. I like to work in tools to soothe the gut wall directly, like liposomal glutathione, pure organic aloe juice, slippery elm, and the right probiotic, in addition to a replenishing, non-inflammatory diet. This takes time – months or even a year or two, depending on the degree of gut injury at the outset – but I have seen it turn FPIES around, and lengthen the list of safe foods.
What about the mystery part – what causes FPIES? In my practice, the children who suffer most have been exposed to a variety of factors that disrupted or diverted the development of a normal, healthy gut biome in utero, at birth, or within the first few months of life. Antibiotics and vaccines are potent tools that can disrupt biome colonization and immune signaling early in life, at birth, or possibly even in utero. The full reach of effects from these practices is largely unstudied. C-section births also disrupt gut biome colonization for newborns, because they never get that “vaginal gulp” of flora from mom on the way out – which should ideally be in top form during pregnancy. Giving your baby a start in life that is as close to what nature intended as possible is one way to lay a good foundation for avoiding FPIES, allergy, and asthma later on. Nobody’s perfect, and babies can develop FPIES nevertheless, just like mine did. But with early and targeted helps, children can go on to enjoy most any food, or at least eat a minimally restricted diet. Just like mine did, and others in my practice have too.