I Think My Son Had A Milk Soy Protein Intolerance & Here's What It Was Like

My newborn, Blaise, had cradle cap. It crept slowly over his whole head, then down his face and onto his body. It was red, this rash, angry, and flaking yellow. He wasn’t a pretty baby, and I kept him in hats because of it. Blaise also had colic. But as an attachment parent, I refused to believe in colic, refused to believe babies just cried for no reason, so I Googled looking for answers. And Googled. And Googled, until I found a site called Reflux Rebels. From what I'd read, it sounded like my baby had silent reflux, a disease in which his stomach’s pyloric valve didn’t close completely, and milk, mixed with stomach acid, splashed up into his esophagus. It didn’t come up far enough to come out, but it was enough to burn and do damage. He was in pain akin to terrible heartburn. But that wasn’t all. I read about the symptoms of a milk and soy protein intolerance, and it sounded familiar. So I kept reading the information on the Reflux Rebels. Yes, my son had green, mucus-filled poo. Yes, he had a red diaper rash that wouldn’t go away no matter what creams we put on it. And yes, he had terrible cradle cap. All in all, Blaise had all the symptoms of milk/soy protein intolerance (MSPI). My heart sank.

At the time, we didn't bother confirming it with the pediatrician, we just told her he had it. A 2008 report in the journal Canadian Family Physician (CAN) notes that treating a milk/soy protein intolerance in infants can be done one of two ways: an elimination diet followed by a reintroduction of the "suspected allergen," or a "hydrolyzed formula for formula feeding mothers." Because the CAN study suggests that "diagnosis is suspected on history alone," we didn't absolutely feel we required a pediatrician's approval. And Blaise's MSPI came along with reflux, which we did confirm: I sat and let my doctor watch me breastfeed. She saw the suck, suck, suck, scream pattern and diagnosed silent reflux right away. That diagnosis meant he sorely needed medication. But Blaise's milk/soy protein intolerance was a totally different story.

A milk/soy protein intolerance happens when a baby reacts to the milk and soy proteins found in formula, or even the small number of proteins that pass through the mother’s breast milk. Dr. Jennifer Trachtenberg, Assistant Clinical Professor of Pediatrics at the Icahn School of Medicine at Mount Sinai, tells Romper that usually a milk/soy protein intolerance is "diagnosed after finding blood in baby's stool." Babies are typically happy and fine, but blood in the stool is "one of the most common indicators [that they] can't break down the protein [in their bodies]." While Trachtenberg says it's not typical to self-diagnose a milk/soy protein intolerance and does not recommend self-diagnosis, she acknowledges there's "no real blood test" for an MSPI and that "blood in the stool is usually the first sign."

I did notice that Blaise had visible blood in his stool, and the rest of his symptoms matched so closely that I was 99.9 percent sure Blaise had MSPI even without confirmation from our pediatrician. Now I had two options: give Blaise elemental formula, in which all the proteins have already been broken down, or avoid all traces of dairy and soy in my breastfeeding diet. We couldn't afford soy- and dairy-free formula, and anyway, I was committed to breastfeeding. So my two options quickly dwindled back down to one: I'd have to give up all traces of dairy and soy for the foreseeable future.

I had to read labels on everything before I even thought about eating it, knowing one slip-up could put my son back into horrific pain. I memorized lists of ingredients. My diet shrunk to exclude foods like cheese, real milk, all bread products, and many cereals. My favorite oatmeal had to go. So did ice cream.

A dairy- and soy-free diet means no milk, butter, cheese, yogurt, cream, ice cream, ghee, casein, lactose, lactase, galactalose, caseinate, whey, or any ingredient that contains those words. And babies will react the same way to the similar proteins in goat’s milk. As for soy, I was allowed no miso, shoyo sauce, tempeh, tofu, or soybean oil (which was hardest, since nearly everything is fried in a mixture of soybean and canola oil).

The process of weeding through what we had in our home and planning what I could eat was daunting. I was terrified. I had to read labels on everything before I even thought about eating it, knowing one slip-up could put my son back into horrific pain. I memorized lists of ingredients. My diet shrunk to exclude foods like cheese, real milk, all bread products, and many cereals. My favorite oatmeal had to go. So did ice cream.

My husband worried about my calcium intake, since most of my calcium comes from dairy. Honestly, I just wrote off calcium for the entire time my son had MSPI, since most supplements contain milk. I was worried about calcium stores, since I was already at risk for osteoporosis, but I shrugged that off because that was in the future, and Blaise needed me now. That wasn't something I could ignore. I decided I'd do whatever I had to — even whittle my diet down to next to nothing. If it would help my baby, I'd do it. (Coincidentally enough, I broke my foot several months after Blaise was clear.)

We cleaned the kitchen and began my diet. We found fake butter without soy, and decided rice milk was the best substitute for the real thing (later, I’d prefer the fattier coconut milk). Ezekial bread didn’t have either in it, so I ate a lot of Ezekial bread toast with jam. We had to shop a lot more at "hippie grocery stores," which were more expensive, and the substitutions were expensive, too — if I wanted a pizza, it cost us much more than $10 bucks to make it at home. But we found that Rice Krispies didn’t have milk or soy, and neither did regular pasta. These made the cornerstones of my diet, as did regular made-from-scratch food with butter substitutes. My husband spent a lot of time and effort cooking.

On one occasion after we'd been trying out the diet for a few weeks with success, my mom rolled her eyes and heaved some sighs over my dietary restrictions. That is, until we went out for dinner one night. Two hours later, Blaise was screaming.

At first, we were too afraid to eat out. And when we did, I only had the courage to eat a lettuce and veggie salad with oil and vinegar. I was stressed. I didn't trust waiters or cooks to know what was really in the food, so I stuck to things I knew were safe. But I soon got the courage to grill the waiters. What did they fry in? Can I have this potato without butter, cheese, or sour cream? A baked potato and salad with next to nothing on them became my standard meal. It was bland. Eating wasn't fun. But I ate, and I breastfed. It was enough.

After two weeks, Blaise’s cradle cap and diaper rash cleared up. With the help of reflux medication the doctor prescribed, the pain stopped, and he didn’t cry for hours day in and day out. He began to eat normally. The diet was a success.

Admittedly, before it ever was something we went through, I'd heard of MSPI before. My friend’s daughter had it, but no one else in our family had been diagnosed with it. We suspect, based on stories of green poop, screaming, and needing special formula, that both my husband and I were MSPI babies too, but we don't know for sure.

Any trace of dairy leaves him hyper, tantrumming, and angry. He seems incapable of listening at those times. It lasts around three days. We haven't talked to any doctors or specialists because there aren't any in the area who won't laugh at us.

In truth, a "milk/soy protein intolerance" sounded like hippie voodoo: my baby was reacting to proteins that I ate, which then passed through my breast milk? A little far-fetched. And on one occasion after we'd been trying out the diet for a few weeks with success, my mom rolled her eyes and heaved some sighs over my dietary restrictions. That is, until we went out for dinner one night. Two hours later, Blaise was screaming. “There was butter in those green beans,” I said to my husband. My mom cocked an eyebrow. He called the restaurant. Yes, there had been butter in the green beans.

As a result, we learned to be more specific. In turn, my mom learned we weren’t making this up. Eventually Blaise grew out of his intolerances at about six months for soy, and nine months for milk. This seems to be about common for MSPI babies. I still remember that first piece of cheese I had: standing in my friend Christi’s kitchen, hoarding a tiny block of cheddar. It was the first cheese I’d eaten in eight months and it was just as good as I remembered. I didn't even have an upset stomach. It was totally worth the wait.

Blaise is 6 now. Unlike many children, he’s retained his milk sensitivity. Any trace of dairy leaves him hyper, tantrumming, and angry. He seems incapable of listening at those times. It lasts around three days. We haven't talked to any doctors or specialists because we fear there aren't any in the area who won't laugh at us. Basically, we told the pediatrician he had a milk intolerance, and that's it. We’ve learned to read labels very, very well, and to always ask questions and never assume something’s dairy-free. Like bratwurst. Turns out, bratwurst has milk in it. We learned that the hard way.

We also self-diagnosed Blaise’s two younger brothers with MSPI. We learned the signs quickly, and by baby number three, didn’t wait to medicate him for reflux or start me on a diet. All in all, I spent two years and nine months on milk-free diets. We don’t think there’s been any lasting ill effects, since I was later able to find a dairy-free calcium supplement. Neither of my other sons, who are 4 and 2, respectively, have grown out of it either. I’m not optimistic.

I hated giving up the foods I loved. I hated the stress of reading labels and grilling waiters, but I maintained our breastfeeding relationship with all three of my sons, and that's what mattered to me. We made it through three-and-half years of breastfeeding, and I believe I couldn't have done it without giving up dairy and soy.