Postpartum and a Baby with Food Intolerances (FPIAP)

Warning, this post mentions baby poop. If that makes you squeamish, I would skip it. UPDATE at the bottom! Okay, enjoy!

During both my postpartum journeys, I had to put fitness on hold for two reasons: first, to obviously physically recover from having just had a baby and waiting for my body to be ready to ease back into exercise (duh). Second, for my mental health, I needed to put fitness on the back burner to deal with all the stress I had in front of me… because both of my postpartum journeys were extremely difficult.
With my First daughter, Rosalia, after a swift 7.5-hour labor with an induction using Pitocin and an epidural, I was in for a rude awakening with a rough recovery (since I felt no pain during the labor and birth). Despite being one of the most magical days of my life, my daughter’s birthday was difficult. We breastfed immediately, but little did I know, Rosalia had a tongue-tie. It must have been pretty bad because the lactation consultant noticed it right away and on day 3 while still at the hospital, she had it clipped. However, the damage was already done and for the next 3 weeks I was still in toe-curling pain while breastfeeding every hour and 45 minutes. I didn’t fully heal from it until about 6 weeks post-partum. I also had an oversupply, which left poor Rosalia gulping in extra air, becoming gassy, choking and pulling off, and just being fussy at the breast. We had a lactation consultant come to the house at and I now had the techniques and confidence I needed to keep going.

However it only lasted until she hit the 3-week mark and she was fussy, gassy, and straining until she had a diaper filled with very green stool. Until this point Rosie had the perfect yellow, seedy, breastfed diapers. But after that, her diapers became consistently mucusy. She had painful, explosive bowel movements and grunted, arched, strained and cried out in pain. She had lots of baby acne, rash, congestion, reflux symptoms with an occasional projectile vomit of everything in her stomach (not just a little spit-up), and was plagued with uncomfortable hiccups. I couldn’t put her down. She was always crying until you held her and rocked her. She started having a regular colic time between 8 pm and midnight she would be inconsolable. The only thing that seemed to help was walking around and bouncing her in my arms while singing songs and waiting until she wouldn’t fight the breast and would finally go to sleep. We went to the pediatrician and she tested a stool sample and it tested positive for traces of blood. The pediatrician then told me about milk-soy protein intolerance (MSPI) and suggested I cut out dairy for 2 weeks to see if we had improvement. After 2 weeks, the only symptom that changed was her stools no longer had blood, so we waited one more week but no other changes. She had all of the other symptoms. So the pediatrician suggested we cut out soy.

Just to provide some background, most babies that have these symptoms get better when mom eliminates dairy or switches to dairy free formula (Cows Milk Protein Intolerence CMPI). Half of the babies that react to dairy react to soy as well (MSPI). After that, there is unfortunately some debate and some pediatricians, GIs, nutritionists, and even lactation consultants (at least some of the ones I met with) are unaware or deny there could be further foods causing issues. But from my own research and testimonies from other moms, it is clear that babies can react to more than just dairy and soy. Some babies have FPIES, Food Protein Induced Enterocolitis Syndrome which essentially is on the far end of the spectrum and includes immediate vomiting, lots of blood in stool, failure to thrive, and a trip to the ER. My girls tend to fall into the category of FPIAP (Food Protein-Induced Proctocolitis) which can cause music and/or blood in stool, reflu and colic symptoms, and loose stools. While they do not have anaphylactic symptoms like with allergies (IgE reactions), they have non Ige-mediated or IgG (gastro) reactions that are not life threatening, but cause inflammation, pain, and lots of GI and reflux symptoms. However many also get rashes, congestion, and other more IgE associated symptoms too like my girls both did. Most babies outgrow this by the time they are 3 and their little guts mature but many outgrow it by the first year even. It is comforting to know that time will heal this issue.

Anyway, by the time Rosie was two months old, we were dairy and soy free, and though we saw slight improvement, Rosalia still had very bad days and very bad episodes. The mucus was ever present and she was still visibly in pain. At this point I was nearing my wits end. I was overwhelmed with a colicky, fussy baby who was constantly in pain all day. I had so much anxiety and was scouring the internet finding that the sensitivities could be a laundry list of other foods including the top 8 allergens as well as other culprits. I was ready to go on a an extreme elimination diet. My pediatrician suggested formula, but it was still not a guarantee since even the extremely expensive elemental broken down formulas can still contain allergens. Plus, for me personally, it was heartbreaking to think I could not breastfeed anymore. After all the effort we put in the make it work, I wanted to keep going. And while fed is best, the elemental formula (which we probably could not afford anyway), is about 50% corn syrup (This RD discusses it in her journey here https://happyhealthymama.com/our-journey-with-breastfeeding-and-mspi.html). I felt that for my daughter, breastfeeding while cutting out a few things was the best thing for her, especially since I could control what I ate. I would just make my own specialized formula taylored for her! The trouble was finding out what else she was intolerant to.

The pediatrician referred us to a dietician. The dietician basically told me that beyond dairy and soy there were no other foods that could affect her and that an elimination diet was unsafe for breastfeeding. I left feeling like I was crazy. The pediatrician then referred me to a GI specialist. While waiting for that appointment to arrive, Rosalia went on breast strike. She had been gaining weight very well until then (I have an oversupply and heavy let-down), but she would only nurse for 2 minutes now just to soothe and then wouldn’t nurse at all. We immediately had a prescription for a reflux medicine and within a week she was feeding more again. The medicine definitely helped her tummy a bit, but she was still having a rough time digesting and just living life. By the time her appointment rolled around. We were about 4 months postpartum. The GI doctor said that she only knew this because she went through it with her own son and that the next offender could be eggs and to try eliminating that next. I then took out eggs and within a week she was feeling much better. In two weeks she was a totally different baby. Almost all of her symptoms disappeared though her mucousy stools never went back to normal. But she was HAPPY! And though it may be that her gut needed more time to heal or there was another food that she was only slightly sensitive to, we decided to give it a rest at eliminating dairy, soy, and eggs.

At 6 months we introduced solids and had no problems, though I waited to give her any of the top 8 allergens as well as berries and citrus fruits until after one year old. at 9 months her GI doctor suggested we add back in foods one at a time every few months. So I added eggs back into my diet and she was fine! We were not nursing as much as before since she was eating solids, but still it was an improvement and I had eggs in my life again.

I planned to do soy and dairy trials after a year as well, but then we got pregnant again shortly after her first birthday. With a rough first trimester of morning sickness, we waited to do trials until I was feeling better. At 14 months old, I decided to start eating more berries and for each meal for 3 days. And we waited a week before trying the next allergen. All 3 were failures. Soy was not as bad and eggs were the worst. So we decided to wait again before attempting more trials. We also quit breastfeeding this month since my milk was drying up and it was becoming more difficult in my pregnancy. Since then we have made no changes but hope to do trials after her second birthday.

With my second pregnancy, I was determined to have an easier recovery both mentally and physically. I began to do lots of research and listened to countless podcasts from pregnancy experts as well as birth stories to prepare. I started to prepare for an unmedicated birth in hopes that it would help my recover be swifter. I tried to eat cleaner, exercise and stretch consistently, and prepare my body for labor. I did eat dairy and soy occasionally but mostly if someone else made a meal with either or if we went out to eat. I had planned to eliminate dairy and eggs after 38 weeks just in case my next child had food sensitivities, since I read it can be genetic. But I never ended up fully cutting them out though I did decrease my egg intake.

On 40 weeks and 1 days pregnant I spontaneously went into labor and after a short 6 hour labor with only 10 minutes of pushing, I gave birth to another baby girl, Faustina. The fast labor took a toll on my body (the pushing stage was very intense and I got not breaks between contractions since it all happened SO fast). But I managed to give birth without any medication, not even an IV. And it definitely helped my physical recovery. I was so exhausted from the 3 am birth, the next morning I ate the eggs the hospital brought me without question. My daughter was checked multiple times for a tongue tie and we were told she may have had a tongue tie but it was so slight I should only address it if it caused pain. Which it didn’t seem to then. Things seemed to be completely different this time around. The second day home I went and saw a lactation consultant just to be sure and she helped me with techniques for my oversupply. Things seemed like smooth sailing. Though I did notice she would make a swallowing sound every few minutes that I didn’t recall with my first daughter (hello, silent reflux..).

However, after her meconium stool was gone, Faustina (Fia) never got yellow seedy breastfed baby poop. Nope, it went straight to mucusy. She immediately had congestion, a slight rash, and silent reflux symptoms though no spitting up (swallowing back down, constant hiccups that bothered her, foul breath), she also had smelly gas and stool, and began to become fussy, we also couldn’t put her down for more than 5 minutes before she would cry. I got no sleep. So at her first pediatrician appointment, I brought in a stool sample ready for testing. However, we moved and switched pediatricians since Rosalia has these issues as a newborn and this pediatrician said they don’t test stools. They actually don’t treat this issue unless there is lots of visible blood loss or if there is failure to thrive. Since she was gaining weight well and we couldn’t see blood, then he was not going to pursue it further. He chalked it up to just a fussy baby and tired parents during the first few days home. He told us to wait a few weeks. Also, they don’t prescribe any medicine for reflux unless there is failure to thrive. So while holding her upright, laid-back breastfeeding, frequent burping, and gas drops helped her feel a little better, they didn’t solve anything. And things were getting worse.

I realized I would be doing this on my own. So I eliminated dairy soy and eggs. Things seemed to get a little better. In the first week or two, but my husband was home and we had frequent visitors and help so Fia was being held and comforted constantly. Rather than get better, things got worse. By week 3 I was alone at home with a fussy reflux colicky baby and a toddler. And Fia was inconsolable during parts of the day. She would have a morning, evening, or afternoon of fussiness until bowel movements. Then one day she was fussy the whole day and constantly pooping. The only relief she had was when I held her so she could sleep. Anxiety built up again as I realized that we would have a similar journey like before. But I was already dairy, soy and egg free for a few weeks, but still no improvement, or not much. Meaning, there must be something more she was reacting too.

I decided to switch pediatricians so I could get her the reflux medicine and referrals she needed. While waiting for the appointment, I luckily I came across a clinical protocol for eliminating foods while breastfeeding from the Academy of Breastfeeding Medicine (mentioned in the linked blog that mentioned cutting out the top 8 allergens (dairy, soy, eggs, wheat, fish, nuts, peanuts, and shellfish) as well as corn one at a time to see if it helps. Well I decided to cut them all at once to get a head of the symptoms and add them back in when she was better. I began keeping a detailed food diary and included symptoms for the day to help pinpoint triggers. For this top 8-free diet I went grocery shopping for my favorite alternatives, but it seemed to get worse somehow. We had some good parts of the day but then some really bad days. In the meantime, their new pediatrician got her on an h2 blocker for her reflux and made us a referral to GI. It was incredible to finally get my baby the help she needed and to feel validated. After 2 weeks, and eliminating hidden soy in the prenatal, food starch in canned chicken, and beef, not much had changed. We went to our GI appointment. Long story short, she didn’t think a baby could react to anything beyond soy, dairy, and eggs and that it was probably just reflux. I felt defeated again but certainly not ready to give up. I knew I wasn’t crazy and that my baby was in pain.

I had seen a lactation consultant through my midwife practice who was helping us with Fia’s worsening latch and my forceful letdown. She reevaluated her tongue and lip ties and said I should see a specialist. A tongue and lio tie causes many poor symptoms including reflux from swallowing too much air as well as GI pain from the extra air from not transferring milk effectively. So, we got a referral from our awesome pediatrician to go to an ENT to get her tongue and lip ties revised.

This same lactation consultant also pointed me in the direction of one of the best resources for moms going through this: the Infant Reflux Support for Gerdlings Facebook group. I connected with other moms who had been through this and the infantreflux.org website had a wealth of knowledge and studies related to reflux. Turns out the GI was wrong. Babies can react to any protein ingested by breastfeeding mothers or in their formula. Sometimes it is caused by the Mother’s gut issues and her own sensitivities, sometimes it’s genetic, often times it is both. The website also outlined how to do a Total Elimination Diet (TED) in which you only consume a handful of foods until your baby’s symptoms resolve and you “hit baseline.” Then you can begin systematically adding foods back in to see what their triggers are. This led me to the facebook support group TED Mamas as well as their website which was essential to our journey toward healing. But the diet is extreme and very difficult. But at this point I felt it was the only way to find out what else she could possibly be sensitive to…

During this whole ordeal, I was crying every single day watching my baby in chronic pain straining, grunting, and wailing. I felt inadequate and as if it was all my fault. I felt like a bad mother to both my girls since I couldn’t be fully present and help them. I spent every day comforting and holding my baby and trying to also keep my toddler alive. On good days, we all got showers and maybe I did a load of laundry. But chores piled up and it was hard to get outside in the August heat with a newborn. And mentally I couldn’t handle much. I definitely felt I had postpartum anxiety and depression, but it was entirely tied to my baby’s wellbeing. If she was feeling better, I felt better. I knew that if I could just help her not be in pain, I could get back to being myself again. I thought about formula, but many moms found that it only worked for fewer sensitivities. And personally, I knew we would be better off breastfeeding. Even if she had inflammation from food sensitivities, the healing properties in breastmilk in turn help the gut immensely, so it was worth for her to be breastfed, especially with food sensitivities to help her. So I decided to dive into the world of TED.

My initial TED I picked out from recommendations and things I had seen others have success with, but mostly I chose these foods becausd I was comfortable with them. I chose to eat Turkey, Chicken, Chickpeas, Quinoa, Avocado, grapes, Blueberries, Broccoli, Bok Choy and Coconut. Just before I started, my daughter had a really great evening with no colic and she was happy! So I was a bit nervous about changing my diet. But I did anyway. After 3 days, something was obviously failing horribly and Fia had all bad days. On day 4 she had her tongue and lip tie revisions which meant fussy baby until they heal. That day I decided to eliminate all the new foods I added to start the TED and switch my TED to goods I ate before when we had some good days. My TED was Oats, Rice, Chicken, avocado, banana, grapes, carrots, cucumber, spinach, broccoli, coconut.

Now, she did better on this TED, but she was still reacting and this list includes some very high-sensitive foods for babies on the CMPI-FPIES spectrum. So over the next week I cut more things out. After a week I was feeling the “Keto Flu” or detoxing and my milk supply took a hit. I had my husband come home from work one day to take care of us because I was so lethargic, nauseous, and foggy. She also developed an eczema-like rash across her face that got worse each day. At 2 weeks TED, I cut out oats and rice (big potential triggers). I was down to Chicken, spinach, broccoli, bananas, coconut, olive oil, s&p. I actually felt better after eliminating the grains probably because I was eating so much of it. But we were still having bad days. It seemed as if once I eliminated a potential trigger, she was better the next day, but because I was eating more of another food, she got worse again. The cycle seemed endless and I felt like I would never reach baseline.

I had met another mom on one of the Facebook groups who lived near me. She was a super mom down to only 3 foods, a supplement, and bottled water and she reached baseline and continues that diet to breastfeed her baby. I was inspired by her determination and she recommended an IBCLC with a private practice. Money is tight, but I decided to go ahead and schedule with her since she had a background with gut health and I was desperate for professional help.

This lactation consultant is absolutely amazing (please reach out to me if you want her information those is middle Tennessee!). She had to open the wound of my daughter’s tongue tie which was already healing back together and she gave me exercises and stretches to do to help it heal without reattaching. She also weighed my daughter and found that she was dropping weight percentiles drastically. Between my drop in milk supply, the pain of her revisions, and the pain of her reflux and GI issues, she was not nursing well. She told me not to change my diet and gave me instructions to up my supply up, get my daughter nursing better, and gaining more weight.

My body responded very quickly to the extra nursing and my supply came back and my daughter’s weight was close to on track within a week. In that time I researched more. TED was not working for us. It was too stressful and was not healthy for me. I needed a happy medium between limiting diet to avoid triggers for Fia, but also eating enough variety to get the nutrients I needed. I came across the Autoimmune protocol diet (AIP) which many TED moms adapted by including low triggers and rotating the foods each day as not to eat too much of any food. The idea is that as long as exposure is minimal, then symptoms won’t flare up on foods with a lower sensitivity. That past week I felt like I was eating so much of such few foods, that maybe the high histamine levels were creating a false IgG response in her body. After talking with her pediatrician and the IBCLC, I decided to end TED and begin AIP.

I was so incredibly nervous to start AIP because if I ate the wrong thing, she could have a bad reaction and it may be harder to pinpoint which food caused it. But something had to change and in the end, my baby would outgrow this without long term damage, we would get through it, and she would be fine. So I gathered a list of low trigger AIP vegetables, fruits, and meats (no grains, no nightshades, no legumes) and went grocery shopping.

That was yesterday as I am writing this. Day 2 had a wonderful happy morning, a huge reflux flare up in the afternoon, and a better evening. I flagged the new foods I ate the day before and will rotate them so I can try them again later to see which caused the reflux reaction. It was either cassava tortillas, a bit of lemon juice, or a plum. Maybe even too many carrots or the spring mix lettuce? But time will tell.

This journey is very far from over since Fia is only 8 weeks old. We have a lot of road ahead of us and there will certainly be bad days. But I am praying every day she gets better and I have hope that we will get closer to learning what triggers her. I hope she thrives on this diet and that our lives will resume. It has been the hardest time of my life. It is funny that I picked the name Faustina for the Saint who embraced suffering and offered it up for others for my daughter who has a condition that has brought so much suffering and hardship just in a few months. But we are so blessed to have her and I wouldn’t trade Fia for anything though it is tempting to wish for a “normal” baby. I know it will be some time before I am ready to exercise at least intensely since I do not want to burn too many calories right now so I can use them for breastfeeding and functioning. Until that time, this will be my life. I am trying to treasure it while just taking it one day at a time. Pray for us and soon I hope to look back on this when we are symptom-free! Maybe one day I will read this while eating pasta (or heck, even just a salad-bowl with actual dressing) and I will laugh and cry while thinking about the early days with my little MFPI baby.

*UPDATE 8/13/2020: It has been almost a year since posting this. I figured I would update since we are expecting our 3rd child in February and I am preparing for another baby with potential food sensitivities.

Unfortunately, the AIP diet did not work, but it showed me a few things wrong with the diet I had. At around 3 months with Faustina, I finally bit the bullet, switched my foods to another TED: grass-fed beef, EV olive oil, quinoa, broccoli, Brussel sprouts, sea salt, steamed peeled pear, and coconut aminos. Eventually I dropped the amino and pear. Months 4 and 5 she did so much better! Also around that time we switched to homecompounding a PPI medication for her reflux. The medicine from the pharmacy gave her visible blood in her stool. So took another big step out of my comfort zone and I dove into homecompounding with the help of infantreflux.org and their Facebook Support group. It was the best decision we made. She was finally becoming a happier, healthier baby. I was also able to have more leeway in expanding my diet a bit by adding cruciferous vegetables, other meats, coconut aminos, apple cider vinegar, and chickpeas. It felt like so much freedom!

At 6 months we tried solids. Broccoli, a supposed safe of mine. It was a big fail. A week later we tried quinoa flakes in breastmilk. Also a big fail. We waited until 7 months and tried the quinoa cereal again. Another fail. I was super discouraged. We waited again until 8.5 months and tried grassfed lamb and breastmilk. It went well! I stopped caring too much about mucus in stool and focused more on her reflux reaction and her comfort/sleep with solid trials. Next we tried grassfed beef and that went well too. Next cauliflower, then brussel sprouts, and asparagus. All well. At around 9.5 months I got sick of doing one food at a time and liberally added known statistically safer foods. Before she was a year old we even tried a few top 8 allergens! All passes!

At 13 months now, Faustina eats a very diverse diet. We avoid dairy soy and egg. I limit wheat. She has a little trouble with too much rice or tree nuts, but we still give them. Also raspberries are really tough on her. She is a happy girl with so much energy! She is a our cuddler and our climber and her personality began to shine when her pain was under control. I am so blessed for that.

Rosalia is almost 3! She does not have dairy on a regular basis, but every once in awhile we give it to her to keep exposure and she does okay with small amounts. They both eat vegan cheeses. Though she does not like plain eggs, I give her egg in things and she does well with it. She still cannot have soy. I once unknowingly bought vegan waffles with soy protein in them and she had diarrhea for a week and another week after I removed the waffles. She also is a little sensitive to blueberries so we try not to give too many at once. But otherwise, she is a happy, healthy spirited little toddler.

I am 14 weeks pregnant with our surprise baby. We want more children, but I wanted a longer break to nurse Faustina, who is still breastfeeding. But God has other plans! I am just mentally and emotionally preparing myself for the dark plunge into the postpartum and FPIAP world. I spent my first pregnancy doing little research on anything and felt so ill-prepared for birth and postpartum. I then so much time last pregnancy researching and preparing for birth to have a better birth outcome. I ddi and am thankful for it, but was unprepared for an even worse storm of food sensitivities compared with my first. Well, hopefully third time is a charm and I am doing more research into FPIAP and will be stocking up on a few TED foods, getting resources lined up, probably preparing to homecompound if necessary, and eliminating the top 8 allergies toward the end of pregnancy. I will also be praying and emotionally preparing myself as much as I can to expect a hard postpartum and to have help lined up. It will be so difficult in the thick of it, but I know it won’t be forever and that the benefits to baby will outweigh my inconveniences and sacrifices.

Also found this resource I wish I had then in addition to the ones I listed above: https://www.freetofeed.com.

This blog post outlines the same approach I used and this is a great compilation of resources: https://leneegordon.com/2019/08/05/food-allergies-breastfeeding-ted-diet-fpies-fpiap-and-more/

If you’re suffering from a child with food sensitivities and allergies, you are not alone and you are not crazy. Be an advocate for your baby and follow your instincts. You are strong!

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