Updated: Oct 10, 2019
“Um, honey, can you come back here?” That was me, calling to my husband, as I stood over my daughter while staring at a diaper. “Is that… BLOOD?” I asked. He concurred, and thus began our journey with milk soy protein intolerance (MSPI).
Luckily, we had an appointment with her pediatrician that day, so we didn’t panic and cry (okay, I did a little bit) and after searching the internet, we determined that she was probably having a reaction to dairy in my diet. It explained her recent fussiness that we weren’t sure was really fussiness (She was 3 weeks old! We were still very much getting to know each other.). The pediatrician took a look at one diaper and diagnosed her and gave me some tips for avoiding dairy. Luckily, we caught it before the Christmas festivities, so I didn’t dairy overload during the holidays and REALLY screw up my kid.
In all honesty, my dairy intake had gone up since having a baby. A NICU nurse suggested I consume more dairy to act as a galactalogue, or food that helps lactation. That sounded good to me, because somehow, I was CRAVING dairy like crazy. Cheese, yogurt, cereal with milk, lattes, pudding… it all sounded so good. And since I was hungrier than a horse, I happily enjoyed 3 servings of dairy a day.
So What is Milk Soy Protein Intolerance?
Essentially, this is a condition in which infants (usually 2-3 weeks old, but this is not a hard and fast rule) form an intolerance to the proteins in milk and/or soy that they ingest from either breastmilk or formula. Please note: this is not the same as lactose intolerance! Lactose is a sugar; this is a reaction to the PROTEIN in milk.
Milk protein intolerance is estimated to occur in 2-7% of infants, and of those with a milk protein intolerance, 50-60% will also have a soy intolerance. Symptoms include:
Fussiness (before, during, and after a feeding)
Stools may be infrequent, watery, mucous, or bloody
Skin rash, eczema
The good news is that this is typically temporary, and most babies outgrow it by age 6-12 months and can consume dairy and soy without problem.
After eliminating dairy, our daughter improved. She wasn’t fussy, she was happy and content, her skin cleared (I thought it was cradle cap), and her diapers were returning to normal. Then, after I prepared a Japanese feast for New Year’s Day… we had a terrible time the next day. Green, mucous-y stools with blood and a very upset baby. I could tell she was in pain. I called the doctor and they advised me to eliminate soy.
It turns out- soy is in EVERYTHING. I’m kind of kidding… but also not. Soybean oil is used in many processed foods. Technically, soybean oil is not an allergen and there aren’t enough proteins present to trigger a reaction in most people. That is all good and fine, but check out other mom forums and you will find- we all go whole-hog, scorched earth. At this point, it had been weeks with a baby that would cry out in pain, had diarrhea and was just kind of miserable. We’re desperate. We avoid soybean oil.
The thing about these proteins is that they can take up to 2 weeks to leave your system… so you eliminate the food and have to wait to see what happens. Because of this, I also eliminated eggs and nuts. Two weeks crept by, but then we had a much more peaceful home. Most important, I could tell that our baby felt better. She was smiling and interested in the world again and I could lay her down for naps.
Eventually, I was able to add nuts back. I am still experimenting with egg. When I had an egg a few weeks ago, she was fussy all weekend and I saw some blood in one diaper a few days later. I’m not sure if it was the egg or something else. That’s the tricky part about this. But I plan to try it again soon. For now, we know that dairy and soy are a problem.
Some Practical Tips:
Reading labels is imperative and time consuming. Dairy and soy are in so many foods. And I have found that it is a complete crapshoot which foods or brands will have them. My favorite example: graham crackers. There is one store brand I have found that do not have dairy, egg or soy. It’s a generic brand, it’s not organic, nothing fancy. Another example: bread. I cannot find one sandwich bread, even organic, that do not use soybean oil. However, our grocery store has a fresh bakery and most of their breads do NOT use soybean oil. You really just have to start reading labels and learning which foods are clear.
Lean heavily on the stuff you know is clear already: fruits, vegetables, whole meats, whole grains, dried beans, oils in your pantry, nuts… you get it.
Be flexible with meals. I used to hardly ever drink smoothies. I never bought protein powder, but I found one that uses hemp and pea protein (you cannot use a whey protein powder for MSPI as that is dairy-based). Now they’re part of my regular breakfast rotation, since eggs for breakfast are out and I have to be picky about cereals and I cannot eat oatmeal for breakfast every day. Other typical options are inspired by my travels: toast with cold cuts that I’ve enjoyed at European breakfast buffets, and gallo pinto (black beans with rice) that I fell in love with in Costa Rica.
Talking About Feelings
Mamas, if you are going through this, I have to tell you… please reach out to someone who has gone through a similar story. I was lucky enough to know several mothers who went through the same thing and their support was so important to me.
I’m a dietitian, my training has prepared me for the cognitive part of food allergies and intolerances. I understand the science of what is going on here. But as a new mom, I was not prepared for how hard it hit me emotionally. The thought that my breastmilk was causing pain for my child was hard for me to understand and accept. I spent a few nursing sessions with tears falling down my cheeks. This was one of the things I’m supposed to do as a mother- provide nourishment for my child- and it was hurting my baby.
I wanted so bad to breastfeed my baby, so the suggestion of using formula was very hard for me. We tried a hydrolyzed formula (mainly so she would get used to the taste and would be less likely to reject it if we HAD to use it down the road). But the suggestion that we formula-feed my baby completely left me a hot mess on the floor. As in, I DID NOT HANDLE THAT WELL. If you are a breastfeeding mom navigating MSPI, know that the current recommendations are to keep breastfeeding because it actually helps to soothe your baby’s inflamed gut.
This is counterintuitive- I know. But welcome to the circus of confusing emotions and feels. “This thing is supposed to nourish my baby, but it’s hurting my baby, but it’s still good for my baby, so I’ll keep doing it and hope that we make it through the next 12 days dear God please send coffee!”
I tell you that part not in anyway to shame moms who aren’t breastfeeding. A fed baby is a happy, nourished baby. And you have to do what is best for you and your baby. There are plenty of good reasons moms formula-feed babies, so the last thing I want to do is contribute to mom-shaming. But for me, breastfeeding is part of motherhood that I really looked forward to through my pregnancy and treasure still.
I have heard some not-so-nice stories from other moms who basically figured this MSPI stuff out on their own after talking to friends and consulting Google. Their doctors missed it, ignored it, brushed it off, etc. It doesn’t have to be this way! If I have learned one thing in this short time of being a mom myself, it is to trust your gut, mamas. Yes, you know that baby better than anyone else on this planet, so if something doesn’t seem right to you, it probably isn’t.
I was so lucky enough to have both her regular pediatrician and a high-risk pediatrician (since she was a preemie) tell me what was going on, not act like I was crazy, and work with me. The high-risk pediatrician even offered for me to talk to a dietitian (before she knew what I did for a living), and I am pretty sure I heard the angels sing “Hallelujah!” over the intercom system. I wish every mom had that kind of support from their baby’s medical team!
It was hard enough for me, as a dietitian, to navigate the grocery store and restaurant menus with this thing… and those things are my life! So I can only imagine how daunting and time-consuming it can be for other moms out there. Through my internet research, I also found a lot of misinformation and read stories and forum posts of people who restricted themselves needlessly. Remember, if you are breastfeeding, you need 500-600 extra calories per day to support your breastmilk supply… so restricting yourself to just fruits and vegetables can have some serious implications! If you are struggling to figure out what you can eat and should avoid, please seek the help of a registered dietitian.