so your baby has a dairy allergy

Sympathies, mama. I’ve been there.

This post is about our experience with my daughter, Bitsy’s, dairy allergy diagnosis. None of this is medical advice–just one mama’s experience to make you feel a little less alone if you suspect your little has an allergy.

Bitsy’s Dairy Story

It’s 4:30 in the morning. My partner just ended his overnight shift caring for Bitsy and is passed out in the guest room. I’m breastfeeding in an anxious haze, trying to make sure Bitsy’s latched properly, that she’s drinking enough, that she’s not nodding off too soon. She finishes, and I do the burp, diaper change, swaddle tango.

I gingerly set her down in her bassinet and I lay down on my bed a couple feet away, praying for a little sleep.

And then I sit bolt upright, for Bitsy has started projectile-vomiting a truly impressive amount of milk all over herself, her bassinet, and her swaddle.

After my initial shock, I pick her up in a panic and begin doing the million steps and calculations needed to calm and handle a vomiting baby, including “swaddle logic” (if I have one back-up swaddle and it takes 90 minutes to wash and dry the vomit-swaddle, how screwed will I be if Bitsy spits up again in 60 minutes)?

It is only after I settle a dry and peeved Bitsy back into a fitful sleep that I begin to frantically Google such delightful phrases as “what if my baby throws up,” and “infant vomit versus spit up,” and “2 week old throwing up.”

Later that day, we take Bitsy to the pediatrician, just to make sure everything looks okay. The doctor is indecisive, telling us that it could be an allergy but it’s impossible to say. As he’s finishing the exam, he casually recommends that I could cut out all dairy, soy, legumes, corn, wheat, and nuts from my diet and see if that helps. I sit numbly for a moment. “All dairy and soy?” I ask. “Even if it’s, like, baked into something?” He looks at me like it should be obvious, “yes,” he says, and turns to his computer. I am floored by the gravity of this suggestion–to cut out all those things would mean a radical overhaul of my entire diet, a diet that was already fraught in the chaotic days of new motherhood. My partner suggests we get fast food on the way home, but I am afraid. What sorts of things go into frying food? Is it corn? Soy? Dairy?

I decide to pay closer attention to food labels and am shocked by how many things contain soy. Pretty much anything packaged, convenient, or fast contains soy, along with a whole lot of other foods you’d never guess. It feels impossible to cut all hidden dairy out of my diet, so I decide to focus on just visible allergens.

My diet isn’t perfect, but it’s unclear to us whether anything I’m eating is affecting Bitsy in the first place. I am pumping and supplementing breastfeeding with bottles of pumped milk, and it seems impossible to correlate what I’m eating with what she’s eating, and then to correlate that with her baseline fussiness.

But a few weeks later, we have our answer. My partner and I have a small, festive meal to celebrate the New Year–a few holiday food staples like mashed potatoes and mac and cheese.

And that week, Bitsy is as fussy as she’s ever been.

Her stools are a mossy green.

And then we see blood.

I remember that moment vividly. I remember the rote velcro-wipe-velcro broken up by the cold shock of is that blood? I remember holding the diaper up to the window so that I could see better, and I remember the immediate panic.

I immediately email the pediatrician, a different pediatrician than the one we’d seen before (this one had helped us get Bitsy onto reflux medication). I tell her my concerns, I send a picture of the diaper, and within a day, we have a diagnosis: allergic enterocolitis.

The pediatrician told me that since I was breastfeeding, I had two options: I could eliminate the common triggers (dairy and soy) from my diet and see if that helped, or I could do nothing. She said that some kids don’t seem to be affected that much by the allergy so no changes needed. But I knew Bitsy was struggling.

In response, I sort of went a little rabid. For about two weeks, I went on an elimination diet, eating nothing but chicken, rice, and sweet potatoes. I agonized over spices, googled things like “do electrolytes have dairy,” worried that maybe it was a sweet potato allergy and that I was just making things worse.

I don’t recommend this approach–it wasn’t healthy for either Bitsy or myself. I dropped weight at alarming, unhealthy levels, and I now understand that this likely had a detrimental effect on my breast milk, and very likely on my health in general.

But Bitsy almost immediately got better, and slowly we introduced foods to discover that her trigger was dairy.

It felt like pregnancy all over again–that specific, crushing stress of knowing that your baby needs your body, but if you mess up, it’s your body that will cause your baby pain.

The whole thing was traumatizing. I still feel my pulse tick higher when I think about those episodes of vomiting, or the moment I saw blood in my daughter’s diaper, or the hours and hours we’d hold Bitsy while she struggled to sleep, so tired but so uncomfortable. Or the way I’d pray that I’d do it all right, that I’d walk the line of giving my body enough nutrition to create the milk that would nourish her without accidentally ingesting something that would cause her pain.

Now, Bitsy’s dairy allergy is slowly letting up. Bitsy still struggles a bit with dairy, but her symptoms now are more mild, less violent. If she eats shredded cheese, for example, she may have some gas and some eczema, but nothing like what would happen when she was little-little. And we can get away with a little butter here and there.

Symptoms

The #1 thing I wanted to know when we were in the throes of Bee’s allergy was what were the symptoms of MSPI? What were the symptoms of a dairy allergy? How would I know if Bitsy was just dealing with newborn things, or whether she has something more going on? These were Bitsy’s symptoms:

Fussiness and discomfort, especially after eating. Bitsy would squirm and grimace and contract her little legs SO much. I know that some of this is just the reality of having a newborn, but we could tell that Bitsy was uncomfortable. (trust those instincts, mama)
Painful-sounding cries. I asked my partner to recall Bitsy’s allergy symptoms from those early days, and this was number one for him: Bitsy had this pained cry that seemed different than “I’m hungry” or “I’m tired.” It was a frustrated, high-pitched cry that we’d do all we could to calm, but sometimes we couldn’t. As new parents we didn’t really know what a normal vs a pained cry sounded like, but our instincts told us that something was wrong.
Trouble sleeping. Bitsy would be so tired and try so hard to sleep, but she’d have a difficult time sleeping through her obvious discomfort. She spent the first 3ish months of her life sleeping in our arms only; if we put her down, she’d squirm and grunt and cry. Part of this was just newborn sleep, part of it was reflux, but part of it certainly was the discomfort she felt from her allergy.
Mucus in stool. I remember googling “mucus in stool” and being confused as to what it was. For us, it meant (this is gross, sorry) stringy, almost like egg white-consistency stool.
Green stool. Like, a noticeable, you’ll-know-it-if-you-see it green.
Blood in stool. The blood wasn’t super obvious–a few stringy flecks–but it was KEY to getting a diagnosis.
Slow weight gain. I’m still not sure if Bitsy’s slow weight gain in her first 6 months was due to the dairy allergy, her reflux, or latch issues, but I feel pretty confident the diary allergy didn’t help.
Dry skin and eczema. Before we cut out dairy, we noticed dry, irritated patches of skin on Bitsy’s chest and cheeks. At 18 months, she actually still gets some eczema if she eats anything dairy-heavy.

Advice

Looking back, I’m so grateful we discovered Bitsy’s allergy when we did and I’m thrilled with where we are today. There are some things we did right, and some things I wish we would have done differently. This boils down to:

Consult your child’s pediatrician. If your child is just not settling, is clearly uncomfortable, is having a hard time feeding, or has skin concerns, I would 100% see if you can talk with your pediatrician. Take pictures of your baby’s skin and her poopy diapers. I have 0 medical training (unless excessive googling caused by perhaps a touch of hypochondria counts?), but I often wonder if much of “colic” is actually an allergy. If you Google MSPI or “dairy allergy”, many of the top results make it sound like it’s a pretty rare condition. But I wonder if it is as rare as it seems. And you know what? In a weird way I feel very lucky that I decided to eat a ridiculous amount of mac & cheese around New Year’s 2023, or else Bitsy’s allergy may never have been obvious enough to merit a diagnosis. She may have just been diagnosed with “colic.”
Fight for resources. I wish I had asked that too-glib doctor who recommended an elimination diet for a referral to a dietician or nutritionist; I wish I had expressed my fears as a parent trying desperately to feed my child. I wish I had asked if there were communities available for parents like us, who were so tired and so stressed and thrown into the world of allergies.
Consider the benefits of breastfeeding v. formula feeding. I ended up breastfeeding Bitsy for about 5 months–a month short of my 6-month goal, but longer than I thought I’d make it after her allergic enterocolitis diagnosis at 1-2 months. I have mixed feelings about this. Breastfeeding was hard , and I’m not sure it was actually the best thing for either Bitsy or me. Bitsy did noticeably better once we switched her to formula–better weight gain, better energy, better sleep. I was terrified to switch her to formula, but (with the benefit of hindsight, of course), I wish we would have done it sooner.
If you’re breastfeeding, don’t severely restrict yourself. Again, I am not trying to offer medical advice–just in my experience, my decision to cut out all but the top-8 least allergenic foods likely did more harm than good. Bitsy’s allergy ended up being a fairly common one, and I could have started with eliminating just the top allergens. If you do decide to go on a restrictive diet, please please please lean on your support system to make sure you’re getting the nutrients you need. Don’t forget that you still need to fuel yourself.
This is so very hard, but know that it will take time for your baby’s system to heal. If you don’t see improvement right away, know that it’s okay. It takes time for a baby’s gut to heal.
Know that I see you. Know that despite how casual your doctors will be about your baby’s allergy, know that I see you. I see how hard it is, how traumatic it can be, how you’re agonizing over every decision. I understand how you’ll have memories that will burn themselves into your brain, even through the fog of the first 12 months. Know that other parents have gone through this and found it impossible, too. And we’ve come out the other side.

Resources

When you google “signs of a dairy allergy” or “how do I know my baby has a dairy allergy” at 3 in the morning, sometimes you want answers, and sometimes you just want community. Here are the online places I found helpful when we were in the throes of figuring out my daughter’s dairy allergy:

r/mspi: this is a forum full of parents discussing milk soy protein intolerance. There are tons of good resources on here, and it’s the best place I know of to find parents going through the same thing.
Go Dairy Free: THE place to go if you/re breastfeeding and can’t eat dairy and want to know what you can eat at any given restaurant.
Thrive Market: Thrive has a ton of alternative-diet grocery items that buy online for quick delivery. You can filter for things like “dairy free,” which was a lifesaver for when I needed to control the dairy and soy in my diet but didn’t have the time, energy, or mental capacity to go out and go to the grocery store.

If you’re struggling, hang in there. Lean on your support, lean on me. Your little one will feel better, and you’re going to come through the other side (and there will be plenty of butter once you’re there).

bitsy & dot