How to breastfeed when your baby is allergic to the foods in your milk (and how to do the total elimination diet!)

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Everyone has a breastfeeding story. Some found it easy, some hard. Some really hard. But what happens if the one thing that is supposed to nourish your child, actually hurts them? Then what? Unfortunately, this happens regularly. Here is what happened to fellow mom Lenee. Here is her experience.

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How was being postpartum at first?

Before I got pregnant, the thought of putting a child on my breast weirded me out SO. BAD. But after my daughter was born, as everyone says, that immediately changed and mommy hormones worked. She was difficult to latch in the first 3 days and required multiple visits from the lactation consultants, who needed to ask their boss questions that they didn’t have any answers to. It felt like this was going to be difficult. 

 Our first night at home, I was in so much pain from delivery that I couldn’t even sit. A donut pillow made it worse (yes, I made my husband drive to CVS in the night for a rubber donut pillow). I ended up going back to the triage suite of our birthing hospital and found I had an infection in my incision site and had to start on antibiotics. More on this later. 

 After this week passed, things lightened up a lot. I focused most of my day on scheduling when to breastfeed my daughter, as I wanted this to be as successful as possible. My husband did almost everything these first 2-3 weeks such as cooking, mild cleaning, and helping with the baby when I needed to bathe. I heard such horror stories of moms not being able to take a relaxing bath, and THAT is my favorite part of the day, so I prioritized a warm Epsom salt soak every single night. 

 I found these first few weeks so fun. Fortunately, my daughter would sleep 6 hours at a time in the first month, so we weren’t lacking sleep and were able to sleep at night, be awake during the day, and no naps needed, so I honestly didn’t feel overwhelmed. 

What changed?

 Disaster struck. My daughter started having blood in her poop, vomiting, loose green frothy poop, and screaming episodes and I knew something was wrong. This started at 2 weeks old. We discussed this with the pediatrician who said it was probably a dairy or soy sensitivity from what I was eating, passed down through my milk. Since I’m a nurse, I knew how to research the medical phrases and get into the details of our possible journey, and realized that dairy proteins (aka cow milk proteins) can stay in your system for SIX WEEKS. So this was going to be a long journey. 

What did you try to remedy the problem?

 Long story short, we cut dairy and soy which didn’t resolve anything. We cut wheat. No resolution. So I became desperate, because I knew formula had multiple “allergens” also, (corn, soy, dairy, rice) so until we knew if they were “passes” I wasn’t going to try that, so my only option was to cut out nearly everything from my diet, AKA Total Elimination Diet or TED) and start from scratch and see if her symptoms would resolve, while I continued nursing her.

How did the total elimination diet go?

I ate squash, turkey, and sweet potato for breakfast, lunch, and dinner for seven days to no avail, so I switched to pork, brussels sprouts, cauliflower, and blackberries AND ALL THE SYMPTOMS STOPPED! We had finally reached a baseline. I made this sound easy but this took weeks of hell. I lost all interest in food. I lost so much weight I looked sick (I hate some of my postpartum, no makeup pictures because I look frail). You would think, oh take some vitamins, no problem. My prenatals had soy. Almost ALL prenatals have soy, many have dairy. So I was on the search for dairy/soy/rice/corn free everything. Impossible. I also have PCOS and took Metformin (which can help with milk supply) to regulate my insulin. Turns out, my tablet was compounded at the pharmacy with corn starch, so I had to stop the Metformin until we knew if corn was a pass. 

What advice do you have for any moms who have babies that have allergies to their mother’s milk?

 The only advice I can give to mommas having to do this diet is to join the TED Mamas FB group. They saved my life. 

How did the total elimination diet affect you?

 This diet and lifestyle does indeed affect every aspect of your life. What you buy at the grocery store, your grocery bill (which increases because basically, only Whole Foods has food you can eat.) You also just can’t go out to eat ANYWHERE because butter may have been on the cooking surface and contaminate your food! Yes, that small of contamination would cause blood in her stools. Not only that, but if I wanted to have a girls “lunch” I would bring my own meal, stop at a gas station to heat it up before arriving, and try to hide it and eat so I could be “normal” which isn’t normal at all. I still have to do this for my daughter to this day. 

How did changing your diet go after you reached your baseline?

The next year encompassed trialing a new food every 4-5 days and monitoring for rashes, stool changes, behavior changes, and keeping a daily diary of every single thing I put in my mouth while nursing her through the first year. She met her milestones and stayed on the growth chart and we lived. 

 Throughout all of this, I worked 2-3 days a week, 13-hour shifts and would pump every 3 hours. I would set an alarm and try to go in between patients, which proved challenging in the flu season, but after 2 months of feeling guilty, I became a little mad and thought “NO, my daughter needs to eat, and she can’t eat anything else except my milk, so dang it, I will pump and enjoy this break for 10 minutes. Priorities will show themselves as time passes. 

Do you have any tips for pumping moms?

To make this quick and easy I had a nursing bra that I could put my flanges into, but when I was done, the holes overlapped and it was just my normal bra (so I didn’t have to change bras at work). I would bring a gallon Ziploc bags and just throw the flanges and connectors into the bag and place all of the supplies, milk, bottles, etc back into the fridge and run to my next patient. I know people who would wash, rinse, use soap, steam bags, whatever after every pump. Maybe this is the most sanitary, true. But when you have to step away from a 13-hour shift every 3 hours for 20 minutes at a time, you cut corners. But all of the pump parts and milk on or in any parts remained refrigerated all day long. 

Here’s a little encouragement: if you want to breastfeed, read a book on breastfeeding BEFORE the baby is born. Set yourself up for success. Talk to lactation consultants even if you think you “got it” when you’re at the hospital. STAY HYDRATED. And if you choose to pump at work, don’t feel guilty, hurried, or stressed (even though it will happen) because every human needs to eat. God invented us this way. It’ll be OK!

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5 thoughts on “How to breastfeed when your baby is allergic to the foods in your milk (and how to do the total elimination diet!)

  1. Wow, this sounds super intense! I’m not sure I understand what it is about the pork, cauliflower, berry diet that remedied her symptoms? I’d be interested to know, because I full intend to BF my second on the way. My first had dairy sensitivities, so I’m definitely familiar with what you’re talking about (although it’s MUCH easier to simply eliminate dairy).

    1. Basically she just eliminated everything she ate until she got down to those three ingredients, and her baby wasn’t allergic to those things. Once she realized that she could add in every other food she enjoyed one at a time.

    2. Hi there! This is Lenee’ – the guest writer. I am happy to answer any questions you may have! You can find me at leneegordon.com or email me at leneegordon@gmail.com – I am beginning my blog all about my TED (total elimination diet) in case you end up in the same shoes. What was it about pork, cauliflower, and berries? No idea. But she still, to this day, reacts to squash and turkey so I think it was luck of the draw.

  2. Hi! Thank you so much for sharing my story! I hope people gain insight into this process and if anyone has questions, I am free to help!

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