Always consult with a doctor before making diet changes or starting new supplements.
Getting an FPIES diagnosis is typically equal parts relieving and overwhelming. Relief, because you finally have an explanation for why your baby is so sick. Overwhelmed, because there is so much information out there, and yet so much remains unknown. There is so little known about what causes FPIES, if it can be prevented, and if future siblings will be afflicted. After having a severely allergic child, when I got pregnant with my second child, I wanted to do anything in my power to prevent my second from suffering the way my first did.
This is my experience only, and there is no way to know if any specific one of these, a combination, or none of them at all actually reduced the risk. Even if (and this is a big if) one or more of these strategies is effective at reducing the FPIES risk, no results for any individual child can be guaranteed. For me, having a list of things to at least try was super empowering. It helped ease my worry. The research links included below are regarding IgE allergies, or general atopic risk. They are not specific to FPIES. Nevertheless, doing research and using anecdotal stories was my coping mechanism. It gave me a sense that I had some control in an otherwise murky territory. While I have included a few research links, please do your own research and consult with your pre-natal care team to determine the best course for you and your child’s health. The best news is that my second child is now 9-months-old, and every food we have tried has been safe!
If you want to read suggestions backed by more research and evidence rather than a personal story, check out the last chapter in The FPIES Handbook.
This post is not a substitute for medical advice. Always consult your doctor. This post contains affiliate links.
My Pregnancy Checklist
- I paid attention to how foods made my body feel. I avoided what didn’t sit well. I continued this throughout pregnancy, as it changed at different points. I have no research study for this one, just practicing self-awareness on the effects of food.
- I ate a varied diet to expose my baby to all types of foods and to avoided eating an excess of any one ingredient. Research shows that exposure in utero can reduce the risk of IgE allergies.
- I focused on eating whole foods and limiting pre-packaged or processed foods. This is simply standard advice for healthy eating. Also some types of preservatives are linked to increased allergy risk.
- I ate organic to the best of my ability.
- Raw milk was part of my diet for most of pregnancy, along with a good amount of fermented foods (Harvard Medical School).
- Avoiding synthetic folic acid in enriched food products was one of the things I checked ingredient labels for. Research shows a link between exposure to folic acid in utero and increased risk of food allergies (American Academy of Allergy, Asthma & Immunology).
- To limit sources of antibiotics in foods; I avoided non-organic meat, dairy, wheat, corn, soy, blueberries, beets, and more. It is not possible to avoid antibiotics completely unless you make everything from scratch, so I just did what was possible with a moderate level of effort.
- I cut dairy and soy at 36 weeks. These two foods are the most common allergens via breastmilk and can take up to four weeks to leave your system.
- There is an extensive list of probiotics I took below.
- No synthetic folic acid. I took Methyltetrahydrofolate or Calcium Folinate instead.
- After 20 weeks pregnant, I took 3,000mg per day of Omega 3s. Sometimes my stomach couldn’t tolerate so much, so I took as much as I could. High doses of Omega 3s in late pregnancy and while breastfeeding may reduce allergy risk for the infant.
- For any allergic reactions, I took a mast cell stabilizer. Vitamin D is also a good option for this, and is also a very important nutrient during pregnancy.
- For constipation, I used Magnesium and prunes.
- Digestive Enzymes beginning at 38 weeks and stopping a month after birth to support breastfeeding (protocol).
Additional Protective Measures
- To avoid hand soap in doctor’s offices and public restrooms, I carried liquid Castile soap in my purse and diaper bag. They often have Triclosan, an antibiotic.
- I declined vaccines during pregnancy, and quarantined myself from sick family members, along with frequent hand washing. My goal was to avoid maternal immune activation, a risk factor in allergies.
- For weeks 6-12 while I was experiencing morning sickness:
- Before and after morning sickness, I took Seeking Health ProBiota Bifido twice per day
- I ultimately had to switch to inulin-free Culturelle and stop the Seeking Health ProBiota Bifido as the inulin bothered me.
- 13 weeks on:
- In my last trimester:
- I alternated two Miyarisan and one Mutaflor every other day (note – Mutaflor does have a tiny amount of dairy and soy – equivalent to less than one bite per week. I decided the benefits of these were worth any possible risk from the minute dairy and soy exposure.)
Labor, Delivery, & the Newborn Stage
(These are just notes from my birth plan, for help making your own birth plan, see The Gentle Nursery)
- Delay cord clamping until cord is white and stops pulsating.
- Leave vernix on the skin.
- Only use sterile saline wipes for first 24 hours, then water wipes after that.
- Delay first bath for 2+ weeks.
- Avoid any oil on baby’s skin until after at least 28 days.
- Use natural diapers or cloth diapers.
- Use cotton clothing and bedding (organic if possible).
- Mutaflor for the first 5 days after birth.
- AO+Mist on baby’s skin from birth on.
Additional Notes from my Delivery
- I was GBS positive, so my OBGyn treated me with a Penicillin injection at 37.5 weeks, instead of IV Ampicillin during labor.
- During my first delivery, I had an allergic reaction to my hormone shift, so I was treated preventatively this time.
- We declined all vaccines and interventions, including eye ointment, Hepatitis B, and Vitamin K shot at birth. Given the risk of having another child with allergies we didn’t want any confounding symptoms in the newborn period. So our choice was to sort out a vaccine schedule with our pediatrician that best fit our family circumstances.
- We gave oral Vitamin K instead of the injection. This particular protocol has been show to be as effective as IM Vitamin K for both early and late brain bleeds. This product is the right concentration for a newborn dose. Then, use this product for follow-up doses.
- In case we needed formula, I had an extensively hydrolized formula as well as elemental formula available if needed. My preferred brands are Neocate Infant (for dairy and soy sensitivity) and HiPP Pre HA (for corn sensitivity).
- Before starting solids, we introduced probiotics.
- We gave Mutaflor for the first 5 days of life as mentioned above.
- Starting at one month, we started on Infant GutPro once per week, slowly increasing dose. Watch for constipation and other symptoms.
- At three months, we introduced Gerber Soothe. This is a very low dose and can be given every day.
- For solids, starting at 6 months and all signs of readiness is the current recommendation.
- For us, the key to trialing solids was to balance the risk for FPIES and the risk of IgE allergies by delaying high risk FPIES foods, but giving high risk IgE food earlier.
- We trialed the following foods (one per week) in the following order. Once baby was safely passing many foods, we stopped trials and fed normally.
- Meat broth and boiled meat (grassfed lamb and beef are good options to start with.)
- Vegetables cooked in broth
- Egg yolks (home pasteurized, so still liquid, but killed the harmful bacteria)
- Peanuts and tree nuts, fish, and shellfish
- Healthy fats (avocado, coconut, oils)
- Expansion of tolerated ingredients (whole eggs, coconut chips instead of just coconut cream, raw vegetables, etc)
- More meats, vegetables, fruits, and seeds
- The foods your family likes to eat.
I hope that you find this guide helpful. From the bottom of my heart, I wish you the best of luck and hope that you too can find success avoiding FPIES and other food allergies with your next child.