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.
My 8m old had antibiotics at birth.
Now has FPIES.
We have been following a GAPS diet of meat broth, sauerkraut juice and probiotics. We recently trialed broccoli with a fail.
Not a fan of GAPS for FPIES, and I know many have seen success with it. GAPS aims to right gut flora and heal tissue, but this fails if food is inadequate during the highly demanding period of critical, high intensity nutrition needs that infants have. Adults, older kids and children who are in solid strong growth status may weather the GAPS restrictions and early phases well but many others do not. See my post here on other reasons why this can fail. I have stepped away one on one from practice, but offer ongoing help in group zoom chats in my Nutrition Cafe – we’ve already covered FPIES, EoE and gut health strategies. If you’re interested in joining, see details here.
My son is FPIES to rice and we believe dairy. He will be 2 in May and is still breast fed and as well as I can tell does not react to my breast milk. He tends to have troubles popping at times but overall seems happy and playful. He has over 15 safes and I have not trialed anything new in awhile due to a few illnesses and teething. Any advise is welcomed as I fear I’m missing something sometimes.
A key piece for FPIES is making sure that a child’s gut microbiome (gut microbes) is supportive, not disruptive, for digestion and reducing inflammatory reactions. Children with FPIES tend to have disrupted gut microbial profiles. I assess this with various options for stool testing. If you’d like help with this, use my contact form to get started.
My guy is 9 months. Cows milk fpies. He has been crying alit at night. Wondering if gastrointestinal disturbance at night from general fours issues?
Hi Lauri, not sure what you are asking for here?
My son fits all the symptoms of FPIES except after he is done throwing up he seems to be totally fine, smiling and happy. He is breastfed and I normally can hydrate him with feeding him once his stomach calms down. Just wondering if that is possible with FPIES.
That’s good news that you don’t see the shock-like or listless features that can go with FPIES. If he is gaining and growing steadily, then the amount of feeding that he loses may be of no consequence. My first thought is to check with a lactation consultant to see if anything is awry with his feeding technique. Babies’ tummies are pretty tiny – and if he is an enthusiastic nurser who quickly tanks up with 6-8 ounces, it may be too much too fast for his own good. Contact La Leche League in your zip code for local resources, or ask your pediatrician if they have a referral to troubleshoot this with you.
Hi there, I’m pretty sure my 6 month old has FPIES. We have had the poorest medical advice. She also has a tongue tie we need to fix but are also dealing with feeding aversion (bottle of expressed milk) and I want to get diapers under control before we do the revision. We are getting close to baseline but aren’t there yet. What should I be doing? I am waiting on getting a corn free premethylated folate to start taking. We are both taking Klaire labs probiotic. What would your advice be? I’d like to get back to breastfeeding but am not sure if it’s a lost cause at this point.
Hello Rebecca, good for you for working so hard at it for your baby girl. I couldn’t know what my advice would be without completing an intake with you, but can say that if you are not seeing progress with the probiotic you’ve chosen then there is more you can do. And, a corn free methylated folate may be helpful but it is a bit of cart-before-horse. Your baby needs to calmly digest and absorb macronutrients first (those are calories, proteins, fats, and carbs)! If breastfeeding is thumbs up or down at this point, that can be sorted readily when working with me and I can also help you find the right replacement, whether it’s a commercial formula, homemade from camel milk, or what have you. You can always schedule to work with me anytime by getting on my calendar here.
Hi Judy, my son just had his 3rd bout with FPIES symptoms (constant vomiting 2 hours after digesting solid food, turning into near shock condition). His first bout was with rice cereal and his 2nd and 3rd were from egg yolk. My son is 8 months and is primarily getting his nutrition through formula with intermittent breastfeeding (mostly morning when my milk production is at its highest). My son was, for the most part, exclusively breastfed up until 3 months but then we started formula supplementation because he was low-percentile weight. Our Pediatrician thankfully has an expertise in Allergies, particularly food allergies and does research on FPIES, so he was able to detect this after my son’s first bout at 5 months. His FPIES seems to be only related to solid foods, which you didn’t seem to talk much about in your article. Could you elaborate a little how you recommend introducing solid foods in infants?
Hi Annie, check this blog to answer your Q on that. You might also like to follow me on FB – I often post updates and tidbits there. Stay tuned there also for news on when i will be having FB live events as well as webinars on these topics.
Hi Judy! My baby was born at 34 weeks and they immediately put him on antibiotics for 3 days to make sure he and I would test negative for group b strep (he came a week before I could have the test done). I was negative but I feel the antibiotics are why he has FPIES. He is 10 months and just diagnosed after months of me questioning and voicing my concerns. I exclusively breastfeed and he vomited and had rash after trying to supplement with elecare..in on to supplement and eventually wean with goat’s milk but was wondering how to do so because his pediatrician said it okay to try but do I need to add to the goat milk or not..btw he has had reaction to almost every food I’ve tried and stopped giving solids after his lymph node tripled in size after an allergic exposure…I just want to know if you can sort of lead me in the right direction to get him better. TIA!
Lots here Raven, and lots going on. I can’t guide you in this forum but am happy to work with you to help your son’s feeding and inflammatory reactions normalize, one on one, and you can book an appointment to do that anytime via my calendar (click Consult With Judy Online or In Person). I’d also suggest signing up for my newsletter to stay abreast of announcements for my on line learning modules, coming later this year – FPIES is definitely on my list of topics to tackle there. The very early antibiotics are suspect in my opinion, for triggering this disrupted pattern for tolerating foods. Make sure the lymph node did not enlarge anywhere near your son’s vaccine doses (within hours or up to 3 weeks after) – that is not a normal reaction.
Hi Im from Argentina. I have a 9 month baby that has allergy problems with all food, even neocate.( she is on it) can we make an appointment by skype? Please! Here docs dont know how to resolve this.
Hi Victoria, we can work via Skype or google hang out anytime. Just check here for my availability https://www.schedulicity.com/scheduling/NCFL5Q/services#%2Fservices and go ahead and schedule – the calendar is set at Colorado US mountain time, so adjust accordingly for your time zone. Looking forward to helping out!
How do I go about setting up an appointment for helping me and my 6 month old son navigate thru his fpies ?
Just click here, and you will be taken to my calendar https://nutritioncare.net/make-your-appointment/
Hi Amber, best next step is to make an appointment so I can help you. This is not something I can do over the web in a blog post! Two thoughts: First, you have all your instincts as a mom in tact, and will find the answers and people to help. Second, depending on your child’s growth and current nutrition status, I would not recommend leaping to a GAPS protocol, but, pieces of that can be very helpful. It is best to individualize this tool with monitoring. And don’t worry – it’s unlikely that the shake you drank last year had so large an impact. Maybe not an idea choice but that is not likely to be underneath your baby’s troubles today.
I’m a desperate mom looking for a way to help my son. We have a pediatrician that didn’t listen for 7m on my son life, when I told them something was wrong. I had to switch him to nutramigen myself at 7m. Then demand a referral to a gi. Which tried omeprazole on my son and he reacted and lost his babbling and laughing, eye contact. He also reacted to every vaccine till we stopped them. Last was at 6m. Dietitian gave elecare. Same horrible reaction as with omeprazole. Back to nutramigen and was referred to an allergist that said to just try one food a week and log what happens. No direction. Only safe food at 12m is banana. Homemade hemp milk with nothing added seems fine. I pressured the pediatrician to do a stool test and it came back negative. I know in my heart that there is something in nutramigen his gi track is reacting to causing it to have upper gi bleeding and diarrhea with any food. Please, please help me help my son. Please.
I wanted to add that his colic and issues started at 1w old. At that time I had a shake that I’m pretty sure had artificial sweeteners in it. It ripped my stomach apart within mins. Didn’t even finish half of it. That’s how I react to artificial sweeteners.
Hi Judy! This article is SO helpful. In my private pediatric acupuncture practice I’m seeing more and more FPIES kids and I’m finding the functional medicine approach along with acupuncture and acupressure home care works really well. In one case the baby is having a mild reaction to probiotics. Have you seen similar reactions? How would you recommend handling it? Wait and do a functional stool analysis? Or do you have a specific type of probiotic that particularly helps FPIES. Also, you mentioned that you don’t do the IgG Elisa panel until 18 months? Can it be done in younger babies or is it unreliable until after 18 months? Thanks so much for your help!
Hi Robin, yes probiotics are dicey until you have done some work to assess the biome first. They may be harmful in cases where SIBO is active and this can need prescription Rx to resolve, per attending MD’s opinion. Some herbs help but the most effective ones are often hard to give to infants or toddlers. ELISA is often unreliable in toddlers younger than 18 mos (false positives).
We have begun giving our 9 mo old minute doses of GUTPRO. Now I see your note here that we should have the biome diagnosed first. How do we do that and with whom? A GI doctor with a stool sample?
We will stop giving it to her until I hear from you.
And what is SIBO?
If the GutPro is working, great – carry on. If symptoms are not resolving or they are getting worse, then assessment would be a good idea. GI doctors don’t usually do the type of functional stool microbiology that will be useful in this situation; they are looking for serious infections that can make us very sick or cause copious diarrhea, but not looking for fungal species or commensal flora that disrupt digestion and absorption but aren’t an immediate threat to health. Click for more info on functional stool testing. I can authorize these tests in my practice. Naturopaths, chiropractors or functional medicine MDs do as well. SIBO is small intestine bacterial overgrowth, which can be exacerbated by use of high potency probiotics.
I have been on an FPIES journey for a year now. My son reacts to food through my milk, which has allowed me to discover his eight safe foods. He was breach and an emergency c-section. He was EBF (even when our GI pushed us to switch to formula) and I eventually found a baseline for him after months of agony. Our allergist tested his blood at about six months for allergies, but nothing came up. I am still breastfeeding (and will do so as long as possible to identify triggers and provide him with antibodies) but I am supplimenting with an amino acid formula (to ensure he gets the nutrients he needs). And he is eating his 8 safe foods well. All this to say, what would you do next if you were me? I still feel so lost and terrified and any help is very greatly appreciated!
Thanks so much!
Good for you for persisting and identifying 8 foods your son can safely eat. My next steps in this case would be to supplement with tools that encourage epithelial and gut tissue repair and integrity. There are several, and which ones apply in your son’s case are best chosen with a knowledgeable provider. These can include liposomal gluthathione, N-acetyl cysteine, free essential amino acids, glutamine, the right probiotics, aloe juice (in small amounts), or soothing herbal tinctures in glycerite, such as licorice, slippery elm, chamomile, ginger, or peppermint. I would also evaluate his total intake to assure it’s amply adequate for protein, healthy fats, and non-grain carbs (unless you know of a safe grain). If not done already, I would consider ELISA IGG food antibody panel as well as an ALCAT panel (this observes white blood cell response to foods). These tests can help you find more safe foods or eliminate those that may be unknown agitators. Lastly I would rule out any nasty campers in his gut, such as Helicobacter pylori, Candida or fungal excess, or yucky Strep strains that tend to hide there and disrupt that intestinal wall. Knowledge is power.. keep up the good work!
Wow! Thank you south for your response! When you say a knowledgable provider, would that be a GI, allergist or pediatrician? This is all such great information! And to be able to identify allergies through his blood! Wow! All I can say is thank you for this information!!!
Hi Lindsey, I am going to give you my honest answer. After seeing for years what happens to kids with these issues in usual health care networks: Allergists usually will check for IgE reactions, not the other types of reactions I mentioned earlier. These other reactions (white blood cell, IgG) may be active with FPIES. If you only look at IgE you may miss important information. And it’s not likely that an allergist MD will do the other tests if you ask them to, for two reasons: One, they are not familiar with them and don’t know how to order; two, they don’t know how to use this information. Next: A GI doctor will do endoscopy and will look to characterize the damage to tissue in GI tract, then will offer medications for it. They may offer no nutrition monitoring or support at all (this happens often). In some cases, the GI doctor may prescribe a specialized formula, and these can be useful if chosen correctly, but these are still not likely to be the whole of what a child with FPIES may need.
In my experience, MD knowledge of these tools is spotty. GI doctors do not specialize in nutrition per se and will typically do little to intervene with therapeutic foods and formulas, much less supplements, probiotics, or herbs – it’s just not their job. Some will refer to their own hospital-based dietitian, who will likely give your child something like Pediasure or an amino-acid based formula. I often find children have been given a poor choice of formula by a well meaning hospital based dietitian who is not aware of other options. Lastly, a pediatrician is not specialized in nutrition, allergy, or GI at all, so that is not a good option.
Long short, these situations are my area of expertise and I am happy to help. I work with families remotely often, from very young infants on up to young adults. I welcome you to consider that option. Meanwhile, if an MD is your preference, have no hesitation to interview GI doctors in your region to see what feels like a good fit. Be sure to ask how the therapeutic nutrition components are chosen and monitored.
I am so excited after reading your article!!! I have been to numerous different kinds of doctors, looking for someone to test her for microscopic parasites and other causes than the basics. My daughter is turning two in Aug and is only able to kind of tolerate grass fed beef, one kind of coconut milk thickened with arrow root, grapes, and broccoli. She isn’t vomiting or diarrhea from these foods but has constipation and cramps. She still has horrible reflux. I am more than excited for her to see you!!! Will you send me the information I need to schedule her an appointment. Thank you so much for your article! I felt hope for the first time in a long time.
Hi Christy, get started anytime by following “schedule now” to my calendar here: https://nutritioncare.net/make-your-appointment/ You can also click around my site to learn more about me and my practice. Thanks for connecting!
Hi! How do I get in touch with you to possibly work with my son (3 years old)?
Hi Alisha, simply reach out via the contact form on my website, here – scroll down to fill in the fields so I can hear from you.
Fpies kids have remarkable results with the gaps protocol!
What is the protocol?
Not all kids with FPIES do well on GAPS and I have met many who have failed. If your child is in strong status for growth pattern, odds are better – but if your child is already lapsed or lingering below 10th percentile for weight or length I do not recommend the GAPS approach to gut health in infants or young children. The same outcome can be achieved with other strategies, some of which incorporate features of GAPS so that it suits your child. See my post on reasons GAPS may fail here: https://www.nutritioncare.net/gaps-can-fail-child/
Great article. So many foods these days are causing problems, especially cow’s milk (an old one) and wheat. Not gluten, but wheat. The big-ag business has automated and hybridized their way off our tables. It’s no longer what’s good for us or what tastes good, it’s all about how fast they can turn a profit. I have many infants in my practice (including ASD) that have terrible gut problems. I’m constantly getting mothers with their newborns on Zantac and Prevacid! The silver lining, in a way, is that your son developed this disorder, and now you may help others. Thanks.