Breastfeeding A Baby With Food Allergies
Dr. Trill is an exceptional scientist who shares everything you need to know about breastfeeding a baby with allergies. While researching breastfeeding and babies with food allergies, she saw the need to help other parents facing the same issues.
It is an honor to have her join me to share her expertise – clarifying the difference between intolerance and allergy, along with more misconceptions about breastfeeding and nutrition.
Dr. Trill is the founder of Free to Feed, a company with the goal of supporting parents who are breastfeeding babies with allergies.
How did your journey lead to your creation of Free to Feed?
“My journey started in the middle of grad school. I was pursuing a PhD in cellular molecular biology. I absolutely love science. I was studying protein analysis to help ovarian cancer patients who were receiving chemotherapy; my job was pretty cool. When I was finishing up my last year of grad school writing my dissertation, my husband and I decided to start a family; a fun time to have a baby when you’re writing a dissertation and trying to finish grad school. Our oldest daughter, June, had awful colic. She screamed all of the time. And so we took her to the doctor and said, “Hey, I think something’s wrong. She’s just inconsolable.” And I was really dismissed and just told like, yeah, babies cry. Good luck with that. High five, and sent back home. So we went through that for several weeks. And eventually when she was three weeks old, we woke up to find her completely covered in eczema from head to toe with bloody diaper after bloody diaper.
“And I was then terrified. I was breastfeeding and I felt like I was just starting to get the hang of breastfeeding because it was hard for us, as it is, I think, for many families. And so I took her back and said, “Okay, I broke her. Please help me.” And I was again really dismissed. And they were like, yeah, I mean, maybe just switch the formula. Or it could be that your baby is reacting to cow’s milk protein transferred through your breast milk. Your baby may have an allergy to cow’s milk. And my mind was blown.
“Even as a protein expert, I had no idea that something that I ate could transfer to my breast and elicit an allergic response in my baby. And I was like, oh, wow. Okay. Well, I love cheese, but I really want to breastfeed. So I took out all dairy.
“I think the gastroenterologist just took pity on the eye bags that I had at that point and my poor soul. And we were admitted to the hospital, eventually. It was a really rough journey in the hospital, as you can imagine. Being told things like, my breast milk was poisoning my baby and to do a 24-hour-starvation diet, which if you’ve ever breastfed, you can imagine how hard that is, literally being the food for her. And at the end of it, they just said, yeah, she has a food allergy. There’s not much we can do for you. We can’t test her until she is two. So here’s the Hypoallergenic formula. It’s your only option. And at that point, we started a Hypoallergenic formula. If I can be super honest here, I straight up couldn’t afford this formula. It cost like $50 a can for this special formula for her. And so I went from feeding her something that hurt her to not being able to afford to feed her at all as a grad student on a very tight budget.
“So I started asking the questions of, okay, if you can make hypoallergenic formula, can I make hypoallergenic breast milk? Can I adjust my diet, if it’s something that I’m eating, to a point where she would be able to tolerate my breast milk? And the answer was a hesitant maybe. We don’t really understand this. We don’t know much about it. Here’s a laundry list of foods that could be causing your baby an issue. And remove this for several weeks, continue to give formula, pump like a mad woman, and hope that your baby gets back to the breast eventually. And I did all of those things and it was really freaking hard. And we were able to get back to the breasts, thank goodness. A lot of families aren’t lucky enough to be able to after weeks of bottle feeding. And at that point, I was in the middle of grad school trying to finish my degree and everything else that was going on. I did the army thing. I’m an army vet. I just put my head down and got it done. Just do the thing and get it done. And I breastfed her for a year on this crazy elimination diet.
“I do not recommend anybody else do this. And also, just in case somebody doesn’t know, your breast milk does not contain foods that you eat for weeks on end. It clears very quickly.
“Three years later, we had our second daughter and she started presenting with the same problems while I was breastfeeding her. And I just could not imagine doing this all over again. So I started digging into the research and I thought, there’s got to be research and people and resources and help to navigate this.
“What I found were lots of other parents and some research and no resources. I talked to my husband, and I was like, ‘I started digging into this research, and I’m really dumbfounded that the research that I’m finding doesn’t match any of the information that I was told in the hospital about transference and food allergens that are common for infants and how to really navigate the space. Nothing matches, which is incredibly frustrating and would be a game changer for my next journey.’
“At the same time, in all of the irony in the world, I was also working for a dairy processing facility, running their lab. When I was only a few weeks postpartum and back at work, I was teaching lab techs how to use this simple little test strip that shows whether or not we’ve accidentally crossed contaminated allergens in the facility. So if we were running soy milk and cow’s milk on the same equipment, we had these little test strips to show the FDA that we didn’t accidentally get soy milk into the cow milk or vice versa.
“And I thought, what if I could test my breast milk for soy at any time? I ran into a closet, as one does, and I am squirting my breast milk on this thing, and it didn’t work. Then I started asking the question of, okay, why doesn’t this work? And the answer to that question ended up being that the test strips that are available for food manufacturers are looking for the whole, or close to the whole, version of the protein for the contaminant. Whereas when we consume a protein, we’re breaking it down significantly. It’s no longer in that whole version anymore.
“No one, up until that point, had cared enough to figure out what the proteins actually look like after we digested them and transfer them to our breasts to elicit response in our baby. So I worked very hard on getting grant funding and investor funding in order to figure out what a peanut looks like once it enters our breasts. Because we’re not shooting peanuts out of our nipples thank goodness. It would be very painful. But we are transferring very small portions of peanuts to our breasts, for example, and all other foods, too. Which, for most babies, is very beneficial and a wonderful thing, unless your baby has a food allergy and has reacted to that particular food.
“I have spent the last, almost, four years now, figuring out what all those proteins look like in the breast. Our goal is to create a test strip that allows parents to test their breast milk for the presence of allergens at home. So then we can eliminate all of this misinformation and questions around transference. Can I breastfeed? And is it my breast milk that’s wrong? All of these things that are obstacles for parents, if you just give them the power and the data at home, in their hands, then all of that gets alleviated. In the meantime, there’s obviously a lot of science, a lot of work that has to go into this. We’re working very hard on launching our first test trip, and I’m pretty excited about it.
I am so inspired. I do feel like food allergens are the latest fad. That any time a parent says, ”Oh, my baby’s fussy,” the pediatrician tells them to take dairy out of their diet. And it’s always dairy. I think almost 70% to 80% of families that I work with now, as a lactation consultant, are told to take dairy out of their diets because their baby is fussy.
“Even equally, maybe a little more importantly, on our side is to confirm or deny whether or not food allergies are, in fact, an issue for the baby. Because, yes, there are so many other things that can mimic food allergic responses in a baby such as gassiness, the fussiness, mucous stools.
“There’s a number of things that can occur. And a lot of times I talk to the families and say, like, this is something that first you need to go see an IBCLC about, because you need to assess latch and lactation and anatomical issues way before cutting something from your diet. And I think that this concept of being able to just blame the parent of like, oh, yeah, it’s your fault you eat too much cheese. For a good portion of them, that’s likely not the case. And so we also work with a lot of families to rule out that food allergic responses are happening for their baby. And that’s just as important.
“Right. And I think part of it is that pediatricians are overworked, too, so they don’t have the resources, the bandwidth, or the time to explore why the baby is gassy. So part of it is that part of it is just dismissive. And like you said, it’s so easy to just say, well, just take some dairy out and think that you help the problem. I feel like there’s no more curiosity in the medical community anymore.“
“Yeah, I would totally agree. If you only have 15 minutes to meet with a patient, and it takes time to assess and revise and give people options. And on the food side of things, it takes time for us to navigate whether or not food is actually an issue, make sure that the parents diet is complete during that time, quickly assess whether or not food allergic responses is even happening for this particular child.
“So it’s really easy to just tell parents to remove dairy. And for some, that will be helpful. We’re throwing a dart at a very tiny target here. And while others then just continue honestly to suffer because they’re not actually addressing the root cause of the problem and they’re not eating cheese just for funsies. I think the second piece of that is that, quite frankly, our medical providers just aren’t trained in this particular field, aren’t trained in this particular subject.
“What we see is that parents fall in a chasm between gastroenterology and allergist providers. But that’s not actually what’s happening in the baby. Baby is having an allergic response, so it’s the immune system problem, not a GI problem. And GI doctors are not trained on the immune system issues.”
“And then babies, if they are having allergic issues, typically they are what’s called a non-Ige-mediated allergy. And allergists typically work on Ige-mediated responses, which is that like stereotypical allergy we think about when we’re like, I ate a peanut and I needed an epi pen. But these babies don’t fit either of those molds. They’re a non-Ige-mediated response. So they fall in a chasm between these two specialists and there’s nobody there to catch them. And that’s where Free to Feed accidentally became that net.
“People use the word allergy, intolerance, and reaction interchangeably. What is the difference between those three?”
“There are many places in which my field has a lot of misinformation, and this is one of the big ones. There are allergies, there are intolerances, and then there are sensitivities. As it relates to a sensitivity, sensitivity is more mild; it just makes people and babies kind of uncomfortable.
“Intolerances, which is the most common thing that these children get diagnosed with, is actually not an intolerance. It’s truly an allergy. And the reason is because an intolerance is when our body does not make the proper enzymes to break down the proteins that are transferring through our breasts to our baby. And it’s almost always caught in the hospital right after a baby is born because they will fail to thrive.
“Babies with true intolerances will not keep anything down. They will really struggle, and they will not be released from the hospital. Typically, if they’re not making the enzymes to break down protein, they can’t break down any protein, not just cow’s milk. So removal of things from your diet is not going to help because they’re not going to break down anything.
“Again, super crazy rare for actual infants to have that problem because it’s literally our whole biology to break down lactose because we’re built to breastfeed. And so it’s very common that parents, I believe, are told that their baby has intolerance either because the provider isn’t educated on the differences.
“If your baby has a true intolerance, they’re not going to outgrow it. This is lifelong. Lactose intolerance is one example, because typically we’re born with all of the lactase enzymes that we need to break down lactose as a baby. And as we grow older and older, that enzyme stops being made, and then we just don’t make it anymore. Same thing with other enzyme deficiencies where your baby is born without the ability to make that enzyme. They’re not just going to magically start making that enzyme, they’re going to need medication and they’re not going to outgrow this issue.
“Now, on the allergy side of things – when we think of allergies we think of the stereotypical ‘can’t bring peanut butter and jelly sandwiches to school’ because someone might have an anaphylactic shock reaction and it may be life threatening. You’ll need an EpiPen and go to the hospital.”
“The interesting thing that a lot of people are missing is that there are two categories of food allergies. The first is Ige, which is that stereotypical allergy. Ige allergy simply means that the Ige is the antibodies that can see the food elicit a response from the immune system. It’s just a pathway. That’s all it is. It’s a life-threatening pathway, so it’s still important, but it is a pathway.
“The second type of pathway is called a non-Ige-mediated response. This type of allergy uses lots of other pathways, most of them cellular. It uses non-Ige mediated antibodies in order to elicit response. So almost all, the vast majority of the littles who have reactivity, especially very early in life, have bloody stools, mucousy stools, eczema, the reflux, the vomiting, congestion, all of this craziness, and almost all of them have non-Ige-mediated allergies to a specific food or foods.
“The good news is that non-Ige-mediated allergies are almost always outgrown. The fact is that your baby does have an allergy, the type of allergy means that they’re going to outgrow it. This is because the immune system will continue to develop and eventually get to a point where it’s like, oh, that thing that I’ve been freaking out about is not actually something that’s trying to hurt me. So I do not have to freak out anymore and the baby will outgrow it.
“The downside to non-Ige-mediated allergy is that it can’t be tested for, which is another part of the misinformation out there.
“Parents will go in to get a test for an allergy because babies vomit every time that they eat this particular food, for example. The allergist will do the test and it will come back negative. The test specifically looks for Ige-mediated antibodies. This misunderstanding can be where the slew of misinformation is stemming from, because the test only shows you one type of allergy.”
“For a lot of families, cow’s milk protein is the most common issue. However, another piece of the misinformation is that it’s not the only. For a lot of families, they find that their baby is reactive to more than one trigger, which isn’t super unusual once we dive into this. And one of the other pieces that’s really important for families to know is that we transfer everything that we put in our mouth. So anything that we do eat can get to our breasts.
“But it doesn’t mean that it’s going to get there every single time. Not every single time that I eat chicken is it going to end up in my breast milk. So if you are telling yourself, I really feel like when I eat – insert – weird food here, rice or oats, it causes my baby’s issues. That’s absolutely possible. Listen to your instincts. If you remove this particular food, does it alleviate the symptoms? Because unfortunately we hear a lot of times parents being told that either we don’t transfer enough to elicit response which is absolutely not the case, or that we only transfer certain proteins like only dairy and soy can transfer which is also not the case.
Finding this post helpful?
Learn even more from Dr. Trill in Part 2 of Breastfeeding a Baby With Food Allergies.