FPIES – food protein induced enterocolities syndrome – is becoming a frequent presence in my pediatric nutrition practice. There are no prevalence studies for it yet, and it has only recently been recognized with a diagnosis code. FPIES is a debilitating and frightening condition that affects young infants. When the baby eats, there is sudden vomiting and even loss of consciousness, along with watery or mucousy stools, more than the usual crying and discomfort, and poor weight gain. Blood may be seen in stool. The sudden movement of water into the gut, along with complex immune reactions, may cause a hypovolemia (low blood volume) to trigger shock symptoms. Toddlers can be affected too.
My breast-fed son exhibited these very symptoms as a newborn, just days old, in 1996. We were terrified and scrambled for answers. He would take a feeding, then just explode – with all of it coming out of his mouth and nostrils forcefully – and then he would collapse into fleeting unconsciousness. This happened three or four times in his first two weeks. We were offered zero treatment, and zero advice. We were told it was colic and that we were just nervous new parents who were probably exaggerating.
Finally my son ended up in the ER where the only offering was a work up (that failed miserably) for spinal meningitis. No one had a clue, and we were not treated well by the doctors. In fact, this was such a wreckage of a moment for us as new, trusting, and hopeful young parents that it is what galvanized me to redirect my focus as a nutritionist and help others in this frightful dilemma. I knew then this was not ordinary colic; I knew there had to be an inflammatory component, based on my training in infant nutrition (which I later learned few doctors ever get). It horrified me that any other parents or babies would be left to struggle this way. It was isolating for us, as we knew no one experiencing this (no internet!), not to mention painful to navigate the indifference of the medical community.
I breast fed on an extensive elimination diet, and my baby improved – but I was depleted, and didn’t have the skill set I have now to really do this right. Once he was transitioned to a homemade goat milk formula, he did even better, and chubbed up nicely. He began to do more of what babies do: He smiled, gurgled, cooed, chattered, giggled, slept, pooped (more normally), and generally was happier to be here.
Now I hear from parents almost every week who have little ones struggling with this same scenario. They have been given the FPIES diagnosis, but that’s about it. There may have been a few tests done, but little else to help the baby be able to eat normally and grow well. Hypoallergenic formulas, then elemental formulas, are tried. If breast fed, the babies do better when mom is on an elimination diet. But like I was, many of these families have become emotionally and physically depleted. Breastfeeding on a deeply restricted diet is hard, and introducing “safe” foods for the baby is a roller coaster. No one wants to see the baby struggle with FPIES symptoms. If all else fails, it’s on to tube feeding.
There is a huge missing piece here. What the GI community is overlooking so far, when it comes to FPIES, is the baby’s gut biome. Some screening is usually done to make sure there is no outright deadly gut pathogen in there, but that’s all. There is so much to learn about how our gut bacteria support us from birth, but we already know enough to start working with it – there is no need to wait. We know that the immune system is “tutored” by the bacteria that populate the baby’s gut. Babies who lose normal, healthy gut flora (bacteria), for whatever reason, go on to have more inflammatory conditions later in life. And in FPIES, there are clear shifts in the body’s immune cells that show a lot of inflammation is going on in the gut. Tests for kids with FPIES tend to show more eosinophils (white blood cells that are common with allergy or inflammation), more immature white blood cells (this is the body’s attempt to fight fight fight), as well as obvious changes in gut tissue that show inflammation.
What is causing it? Is it food protein? The answer is not clear. Kids with FPIES often have negative food allergy (IgE) test findings. I have found this to be true in my caseload too. When I have looked further for food sensitivity reactions (IgG) in toddlers with FPIES (babies are too young to reliably test for IgG reactions), those are often negative too. While some kids with FPIES show reactivity to dairy or soy protein, they don’t appear to do so more than the general population. And curiously, two of the most common trigger foods in FPIES are not high protein foods at all. They’re starchy foods – rice and oat – foods that are often among the first introduced to babies. So perhaps FPIES isn’t about food proteins after all.
It’s The Biome, Baby! FPIES babies in my practice have shown improvement with efforts to restore expected, healthy gut flora. While GI doctors will conventionally only rule out life threatening gut infections, I use stool microbiology tests to see if the baby has the healthy bacteria needed to develop normal digestion and immune responses in the gut. This testing also screens for fungal species (yeast), because too much yeast in the gut (aka Candida) will disrupt digestion also. And it looks for “commensal” microbes that are not necessarily pathogenic or life threatening, but potentially inflammatory, if there are much more of them than the healthy bacteria babies need.
So far, just as the literature is reporting, I also notice negative food protein reactions in lab testing for FPIES kids. But -and this is where the literature is pretty mum – in my own practice, stool testing for FPIES babies often reveals inadequate helpful flora. Candida species are not a consistent player here so far, but off beat fungal microbes pop up: Saccharomyces cerevisaie (a component of newborn hepatitis B vaccines) or Rhodotorula muculaginosa for example. But the bigger story is that these stool tests do show more of the “commensal” bacteria than expected, at least in FPIES kids I have worked with. Species like Citrobacter, Klebsiella, Hemolytic E. coli, non-difficile Clostridia, or Alpha hemolytic Strep show up, in spades. It appears that there may be more of these commensal strains populating the gut, than the healthy strains.
Is this the problem? Research needs to be done here for sure. When I work with parents to correct these findings, these kids start to improve. I help parents use probiotics, caprylic acid (from coconut oil) and gentle antimicrobial herb tinctures to balance the baby’s gut biome out. Healthy gut bacteria help digest food, and mitigate inflammation. Your doctor may think a prescription medicine could be useful here too, to aggressively clear the commensal bacteria.
Source: IBSGroup.org
Of course, the other major tool at your disposal is food. Gut bacteria eat what we eat, and they eat first. This is where FODMAPs come in. FODMAPs stands for “fermentable oligo-, di- and monosaccarides and polyols”. A mouthful! FODMAPs are carbohydrates that we don’t completely digest. They are fermented (digested) by bacteria in our intestines. Bacteria aren’t supposed to dominate the stomach and upper small intestine (they help finish the job further along in the GI tract, after our own enzymes and digestive juices have worked on our food), but infections may situate there in the small intestine, up high so to speak, when our own digestion is weak, if immunosuppressive effects are in play, or if a recent infection or vaccination was not tolerated well.
Infections that situate in the small intestine are called are called SIBO (small intestine bacterial overgrowth). These are tricky to culture with a stool test because by the time a meal is digested and passed all the way down to the colon, the microbes that may have been busy with that meal at the start of your GI tract may not be detectable anymore – but they can wreak havoc anyway, especially when we eat foods high in those FODMAPs. Breath tests can detect these, but getting that sample from an infant can be tricky. Invasive procedures to dip-stick a baby’s stomach juices have been done, but it’s far easier to just trial some nutrition and food strategies.
Low FODMAPs foods seem to be helping babies and toddlers in my practice with FPIES. They are turning the corner with some weight gain, improving stools, and no more terrifying FPIES reactions. I shorten this list even further, by removing any foods that don’t meet criteria for Elaine Gottshall’s Specific Carbohydrate Diet (SCD). Many foods allowed on SCD are high in FODMAPs. But by limiting foods to those that meet both low FODMAPs and SCD-legal criteria, I have a short list of foods that are most likely to be easily digestible and least likely to be interesting to the commensal microbial overgrowth in a baby’s gut.
Elaine Gottschall, SCD founder
Some components of GAPS diet can work as well, but I have not seen GAPS alone to work as well as creating individual care plans that draw from low FODMAPs, SCD-legal, and direct interventions to help the baby’s gut biome with probiotics or herbs. It’s trial and error, but the parents working with me on this are the true champions who make it all possible.
Interestingly, grains like rice and oat – two of the most common triggers for FPIES reactions – are first to go when following low FODMAPs and SCD-legal food lists. Soy and dairy products are not allowed either, with an exception in some circumstances for yogurt made from raw goat milk with certain bacterial cultures.
I see rays of hope for FPIES kids, with room to leverage what we already know about irritable bowel disease, inflammatory bowel disease, the role of gut bacteria for good health, and how to use anti-inflammatory foods or anti-microbial herbs or food components. When parents are ready to roll up their sleeves and work with me, it’s a delight when things turn around. For more on FODMAPs, check out Chris Kresser’s post too. And thanks for reading this far!
Hi Judy are you still taking new clients? I am struggling to find someone who is knowledgeable with FPIES and can diagnose my daughter. I don’t know for sure that she has it yet what steps can I take ?
Hi Isabella, I do have a full practice at the moment. For an FPIES diagnosis, see your gastroenterologist. Some pediatric allergists will also diagnose this. Using low FODMAPs foods and using foods that are SCD legal are typically the easiest to manage at first. Correcting small bacterial intestinal overgrowth, intestinal candidiasis, or other gut dysbiosis is key to moving forward away from FPIES. There may also be a mast cell activation piece to the puzzle and your allergist will be informed on this possibility.
Hi, Judy! Thank you for the important work that you do! I wish we could get an appointment with you. Would you mind answering two questions? Where can we find your “short list” of foods? Who can order those tests mentioned here, the pediatrician, any RD, or do we have to work with a GI?
Thanks for hanging in there Jessica, look forward to working with you soon.
Hi Judy,
Do you work with suspected adult onset FPIES patients concerning shellfish?
I typically work with kids, and have resources for adults if that’s the right step. If shellfish triggered vomiting, this isn’t necessarily an FPIES reaction, however. A good lab work up on this would include gut biome status, and IgE foods and IgG foods screening.
Hi Judy,
Can you talk a little bit more in depth about coconut oil and herbs? Do you use MST oil, or just pure coconut oil? I have read a lot about oil of oregano and other herbs for anti-microbial properties, I am just not sure how to safely administer these to a baby.
Depending on the child’s needs and reactions, I use whole coconut oil, or a medium chain triglyceride called caprylic acid (in liquid / oil form, not as a powdered capsule supplement. If you would like to know what is best for your baby, I’m happy to work with you and can give individualized advice in a consult setting. You can access my calendar via my website by scrolling to “Learn With Judy” above then “Consult With Judy Online or In-Person”.
Thank you, Judy! I SO wish we could afford that, but it simply is not a possibility right now. We are already paying $75/week for Alimentum RTF and lots of specialists visits.
I am very suspicious of SIBO/yeast issues in my 8mo daughter. She is currently on her 3rd round of nystatin for thrush/yeast diaper issues. This time I plan to administer it once weekly after the two week course to keep the yeast at bay and hopefully solve for good. As for the suspected SIBO, I plan to start with coconut oil or MCT oil, and am also considering GSE. She is currently on “gut rest” from all solids for about two weeks now and we hope to start solids again (following your above protocol cross referencing both lists!) this weekend. She was having the vomiting multiple times response to different food trials, as well as some chronic reactions it seemed (before starting ALI RTF- blood in stool, colic), as well as when we tried to go back to breastmilk (I have such a larger freezer stash and I was praying she maybe outgrew the intolerance), after being on ALI for a few months. So thankful I found your blog, and thank you for responding! Hopefully these interventions work well for us, otherwise I may have to try to figure out how we could afford a Skype with you!
Sorry Judy, one more question. With the antifungal’s I noticed a period of die off for my daughter. Will the same be true with starting coconut oil or MCT oil in the die off of the bacteria, or is that not as bad as the dying yeast?
Hi Katie, at this point you’re asking for treatment advice in detail and unfortunately I can’t give that in this forum. Glad the blog is helpful!
I would love to set up a phone or Skype appointment with you. Can toy send me information on how to do that?
Hello Jenny, e mail to the address you provided failed as “unroutable”. If you’d like to set up an appointment you can do that anytime via my calendar here – you will receive a confirmation with info about what I need for that first appointment. Be sure to use a correct e mail address so the info can reach you.
Dr Judy
my grand baby girl is 6 months old” my daughter gave her oatmeal 3 three times last months as she introduced her to solids. The third time she threw up 7 times got dehydrated and spent 2 days in the hospital. Thinking it was the flu, the next week gave her oatmeal baby food again wight he same result. The pediatrian suspects FPIES and my daughter is beyond terrified and overwhelmed. I am too now that I read the severity of the condition.
We have the names is 2 allergy doctors who she has appointments with in February but she remarked that when she called them for advise they just said to try fruits in a cavalier manner. Now she’s afraid they don’t know how serious FPIES is.
I know from experience how time consuming educating ones self about a new ailment one has and then finding the right doctor who will know what to do right away instead of giving bad advise or merely guessing.
We are in Michigan. You are in Colorado. Is there any way to connect to get some vital information to cut the exploration and education process on FPIES so our sweet Laney can find a successful diet?
Sincerely,
Very very concerned scared grama
Patricia
Hi Patricia, I replied to this same query that you posted on my GAPS blog. Look for a message to your e mail also.
Wow I wish you were here in Australia, my daughter has fpies to rice and a few others and IgE to cows milk & eggs. My husband swears it is from a course of a string antibiotic at 6wks of age due to contact with someone with whooping cough (she was too young for the vaccine yet).
We have been using a good baby probiotic and a iamb bone broth to help her gut. Also very particular on what foods we introduce, high in minerals & vitamins. I also have eliminated my diet hugely so u can stil BF as she will not take neocate or any others.
Unfortunately we are in a very remote area so no gp’s really are aware, my paediatrician kind of brushe me off, so I had to travel 12 hrs to another for a dx. But I must deal on my own, do my own research and trial with an emergency plan from my allergist that I contacted! Any research or articles you publish would beg be greatly appreciated.
Thank you,
Nancy
Hi Nancy, I’m always available via Skype and have done this for others across the globe (Japan, Singapore, Canada, UAE, England, etc). I am hoping to put together a book soon for parents so they can get help fast and inexpensively, but until then I am available to help out if you have internet.
Did you happen to write that book ;)?
Hi Katie, no I did not write Elaine Gottschall’s book, if that’s the one you’re referring to.
I took my almost 6 mo EBF son to the Ped today because I suspected FPIES. He’s had the reaction to oats and rice so far. Where are you located and contact info to make an appointment?
Hi Summer, I’m located just outside Boulder CO and often do consultations via Skype or phone, if families are not able to come in person. If I have all the info I need, this can work well and you can keep your local MD in the loop. We can discuss if this is an FPIES story or perhaps less complicated, and in either case give you a supportive nutrition plan going forward. Here are options for making an appointment, you can place yourself on my calendar anytime. https://nutritioncare.net/make-your-appointment/
Thanks for connecting – looking forward to helping out.
Judy
My son had a very similar experience to yours at birth. He was hospitalized at 2months for 10 days and eventually placed on an NG tube. He still reacts with classic FPIES symptoms to milk (when challenged in hospital setting) at age 12… based on this article, what would you say would be the reason almost all have outgrown yet he has not? What would you recommend nutritionally?
I’m so sorry to hear that symptoms persist at age 12, but this does happen. Legally and ethically, I can’t (and wouldn’t) make recommendations over the internet. If underlying issues (gut biome, gut infections, inflammation) were never assessed and corrected, it can be the case that a child will not outgrow these reactions and the immune system will continue to struggle with a food. My recommendation is to make an appointment so I can trouble shoot this and help you in a targeted fashion. Even at this age, there are options that can improve the picture!