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FPIES solutions have come a long way in recent years. We’ve moved from mystery and fear into options that can help babies and kids feel better with an FPIES diagnosis. FPIES solutions – that is, solutions for food protein induced enterocolitis syndrome – abound, and kids can add more safe foods that we once thought possible. Read on for 7 FPIES solutions that I’ve seen great results with in my pediatric nutrition practice over the years.

I began finding FPIES solutions in my pediatric nutrition practice before it was even called FPIES. By 2017, consensus was finally published on exactly what FPIES is, but guidelines for feeding and nutrition were on the thin side. What can you feed these kids, safely, and so they can grow, play, sleep, poop, and be happy? Many years before, I had had to find solutions for my own son – so, while it was nice that FPIES was finally recognized as a diagnosis that did indeed need attention, it had come about twenty years too late for us.

Born in 1996, my baby presented immediately after birth with inexplicable symptoms – classic FPIES, but nobody knew that at the time. He had 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; pallor and listlessness; relentless crying and colic; insomnia; eczema flares up and down his body; thick cradle cap. My own food intake mattered as I was breastfeeding, and I gradually eliminated so many foods that I felt weak myself.

This started when he was just three days old, and we were terrified. Maternity staff at the hospital where he had just been discharged told me to put him on top of our clothes dryer and turn it on, to stop him from screaming and vomiting. I am not making this up. We later had emergency room visits for these episodes, and were given zero guidance. No FPIES solutions there!

Though I’d completed my graduate and undergraduate degree trainings in nutrition, I had never heard of anything like my baby’s symptoms, 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 our son was 8 months old, we’d rotated through breastfeeding, breastfeeding on a carefully restricted diet, hypoallergenic formulas, elemental formula, and then finally settled on a homemade goat milk formula that I felt confident creating myself given my training (no commercial goat milk formulas existed at the time). 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. For FPIES solutions, formula changes are just one trick to try, and there are now several to choose from that I did not have the option to try back in the mid 1990s – see below for my top picks.

Pediatric gastroenterologists and allergists have begun to understand that immune reactions to foods other than a classic IgE allergy may be active in FPIES. In fact, as few as one third of kids diagnosed with FPIES have measurable IgE food reactions to trigger foods. FPIES is now generally recognized as a non-IgE mediated condition. It can be quite serious, with impacts on growth, gain, development, and quality of life as well, as foods become more and more restricted: I once worked with the family of a seven year old child who had been restricted to three safe foods: Bison, carrot, and celery, after years of FPIES reactions to foods and unsuccessful searching with the local children’s hospital. School and usual activities were out of the question due to fatigue and poor health for this child; most days were spent on the couch. But, in six months, we had reclaimed fourteen foods and the child was much healthier. More foods followed, as did more health and vitaiity.

Yes, there is hope. Here are 7 FPIES Solutions I lean on in my pediatric nutrition practice for success. See what your care team can do to work with you on getting these going:

1) Work with your own diet. If FPIES symptoms are active early and your baby is breastfed, replace the usual trigger proteins from your own diet. Eliminate them one at a time, so as not to over-restrict yourself, and so you can see what really needs to go and what you can keep. Many moms I work with over-restrict out of anxiety or dogma on the web about what you should’t eat. But none of this applies to you, unless it does. So, try it all out. Top triggers are cow’s milk/dairy, soy, nuts, gluten, rice, oat, eggs, corn, and high FODMAPs foods. Experiment with rotating foods, find what is problematic. Super important: Replace any proteins withdrawn with nutrient dense options. As a nursing mom, your nutrition needs are high. FPIES Solutions proteins I like are wild caught cod or salmon, plain collagen from beef or chicken bone, bison, and higher protein pastas like lentil pasta or buckwheat pasta (this is gluten free), camel milk (sounds crazy but it has worked often in my practice), or scallops (if you can get them!).  Keep any foods that seem to be well tolerated.

2) Eat organic, as much as is feasible in your budget. GMO foods and pesticides have been linked to increased allergy (not to mention ADHD) in children, and this is the last thing an FPIES baby needs. For meats, pasture raised will be a better bet (avoid GMO soy and corn fed meat) if it’s in your budget.

3) Move to lower FODMAPs foods in your diet as you breastfeed. Go-to FPIES Solutions options for breastfeeding moms in my practice are buckwheat or lentil pastas mentioned above, red lentil soup, ghee (yes, ghee – this is butter with dairy proteins removed), buckwheat pasta (this is gluten free), garnet yams, green beans, lima beans, butternut squash, zucchini, quinoa, tigernut flour (check out this recipe for some delicious bars), blueberries, raspberries, green apples, coconut yogurt or canned coconut milk (for cooking, baking, or boosting smoothies – not as a formula), cauliflower mash or “riced” cauliflower, and – believe it or not – congee (here’s why). Check my recipe blog for more ideas. If a food you eat passes, odds are better that it will pass for your breast-fed baby too.

4) If breastfeeding has simply become too difficult, that’s ok. You need to be rested and happy to enjoy and care for your baby. If you are stressed and anxious, your baby will be too. So do what helps you feel well, even if that means weaning earlier than you’d hoped. FPIES Solutions options: There are now so many formula options out there, and one may work well for your baby. Check these out:

  • Kabrita Non GMO Goat Milk formula, – Goat milk protein may be well tolerated by about half of babies who do not tolerate cows milk protein, so this can work in many cases. The carbohydrate source in this formula is lactose, which is the same as the carbohydrate source in breast milk. Lactose is not a protein -it’s an essential fuel source for babies that formula companies traditionally replace with corn syrup (yuck!). Lactose will help feed and diversify a healthy gut biome for your baby, so go with a lactose containing formula if you can.
  • Bubs Organic Grass Fed Infant Formula, – This is a cows milk source but grass fed with some casein and some whey, with a lactose carb source. The feed source for the cows makes a big difference for some babies. Not a go if a casein allergy is certain in your baby’s case, but otherwise may be worth a try. A goat protein source version is available too.
  • Bobbie Organic Gentle Infant Formula – Uses hydrolyzed whey and no casein as protein source, which means the top trigger protein for FPIES (casein) is not here. Hydrolyzed whey is partially digested already for easier tolerance for your baby. And it has a lactose carb source, again – my preference over GMO corn derivatives commonly used in many infant formulas. I could not find this on amazon, but did find it here. This one is actually my favorite overall!
  • If none of the above work, you might have luck with Alimentum Ready To Feed formula, which uses a tapioca starch source instead of corn syrup, and uses partially hydrolyzed milk protein for better tolerance. Moving beyond that, consider elemental formulas like Neocate, Elecare, or Cambrooke formulas. Your doctor will be most familiar with these options.

5) Carbs matter. Though our understanding of FPIES began as a journey that was all about protein, it turns out that the gut microbiome has a big role to play, and carbs are key to fuel and diversify a healthy gut microbiome in our first years. What I have observed across 25 years in practice is that higher FODMAPs carb foods (like avocado, oatmeal, brown rice, peaches, mango, onion, red apples, plums, and many fruits, depending on how big a serving is eaten) will trigger FPIES kids. I believe this is because the gut microbiome is disrupted with bacterial and/or fungal overgrowth, and unable to helpfully ferment those lengthy carb chains. Left incomplete in their digestion, fermentation and absorption in the gut, water will rush in, cause vomiting, diarrhea, and even fainting.

I don’t like seeing babies and toddlers on keto, yeast free, or very low carb diets for many reasons – but this is a biggie. Your child’s gut biome needs to evolve, and carbs will help. Start with low FODMAPs foods to build your child’s growth pattern, sleep cycle, and overall happiness – yes, having enough of these in my experience helps mood, developmental tasking, and sleep cycle stabilize. Over-restricting carbs can cause stress, anxiety, poor sleep, and swings in energy and mood for young children. Move gradually into more fiber foods as your child’s biome recovers: Raisins, chia, flax meal, lentils, buckwheat, fresh vegetables.

6) 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 system, 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, critical for setting up normal immune function, and mitigates allergies and asthma later on.

Most gastroenterologists will check for pathogen bacteria species with a PCR DNA stool test. Worth doing for sure, but go deeper. This testing often skips FPIES culprits like overabundance of fungal (yeast) species or dysbiotic bacteria like Klebsiella, Citrobacter, Methanobacteriaceae, or many others, which can be disruptive to an infant or toddlers’ 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. In my pediatric nutrition practice, I rely often on the GI MAP from Diagnostic Solutions Lab.This test also profiles beneficial flora, so you can see if important helper bacteria are colonizing your baby’s gut or not. The test also captures stool chemistries for markers of inflammation and good digestion.

7) Build, build, build: While most my FPIES cases show a good deal of bacterial, protozoan, and/or fungal dysbiosis on stool studies, it doesn’t always work so well to kill kill kill. Years ago, functional medicine practitioners would respond to these findings with heavy rounds of antibiotics, antifungal medications, or strong antimicrobial herbs. Those have their place, but for infants and young children, building the natural inclinations of the gut microbiome to right itself can work even better in many cases. This means I use diets, foods, and products that build defenses – like probiotics, immunoglobulins (like this allergen free product), human milk oligosaccharides, or larch arabinogalactan to fuel and defend a strong and diverse microbiome. Direct soothing to reduce inflammation of the gut wall is on my to-do list also: Tools like liposomal glutathione, pure organic aloe juice, slippery elm, curcumin, marshmallow root, chamomile, or fennel are handy tools too.

Remember that your kids get to be healthy, and there are workable FPIES solutions to make life better for all of you! Contact me here if you’d like to keep abreast of ongoing materials or resources from Nutrition Care For Children.

 

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