E is my second child. He’s 23 months younger than his brother, my first child. It hadn’t been that long since I’d done the newborn thing. I thought, “This is my second little guy. I’ve got this. I know what to do now.” But, as second children do, he threw me some curve balls. The biggest being that he’s allergic to dairy.
Now, before I go on, let me qualify some information for you. I’m a neonatal nurse practitioner, I have a friend, who used to be our neighbor, who is dairy allergic herself and I happen to have a close friend who has a child, a bit younger than my first, who has a severe dairy allergy that causes GI issues, similar to what E has. These things helped me arrive at my findings with E. I am NOT a pediatrician or an allergist. If you should think some of this info might apply to you or your child, I encourage you to discuss it with your practitioner, as they will be best suited to help you navigate all of this, because they know your histories.
I had E at home. I put him to breast within minutes after he arrived. He breastfed like a champ. Things were great. He latched and nursed, no issue. But from almost the moment he arrived, he screamed. He was either nursing or sleeping or screaming or pooping. Now, I know newborns sleep and eat and poop, primarily, but this kid didn’t have a happy waking moment. And it got worse. He was inconsolable at times. He also had very runny breastmilk poops. I remember thinking, in my fuzzy postpartum haze, that his poop was more on the diarrhea side than I remembered his brother having, but brushing it off as just a variation of normal. It was yellow (bright yellow, but still yellow), soft and didn’t obviously smell. So we pressed forward. He was fussy and gassy. SO gassy! I remember talking to our pediatric nurse practitioner about it and some ideas being brought up, but he was growing and he was happy-ish (he still cried so. much.) so we just pushed on. And then…
He was six months old and we started solids. I do baby led weaning – which is an easy way to say I skip the baby food purees and just started giving him bite sized pieces of easy to swallow foods, that I was eating. So of course I offered cheese and yogurt because those were staples in my own diet. That’s when things got worse. His poop became vivid yellow or fluorescent green, slimy and mucous-y and it smelled bad. He never had obvious blood in his stool, but I could guess that if we tested it, it was there. He was also MUCH more fussy and gassy. He co-sleeps with me. He would scream out in pain in the middle of the night, move around and let out a lot of gas. Then he would calm down and go right back to sleep.
Finally, a light bulb went off in my head. Maybe it’s dairy! Dairy is the number one food allergen in infants and young children. “Approximately 2.5 percent of children younger than three years of age are allergic to milk. Nearly all infants who develop an allergy to milk do so in their first year of life. Most children eventually outgrow a milk allergy.” –Food Allergy Resource and Education Dairy allergy reactions come in a range of severity from mild to extremely severe and anaphylactic. E falls somewhere in the middle. Fortunately (and I am so very thankful) his allergic reaction does not cause hives or swelling and doesn’t close off his airway, requiring us to carry emergency drugs, that we might have to administer, if he gets an accidental exposure. His reaction qualifies as FPIES – Food Protein-Induced Enterocolitis Syndrome. “FPIES is a type of food allergy affecting the gastrointestinal (GI) tract. Classic symptoms of FPIES include profound vomiting, diarrhea, and dehydration. These symptoms can lead to severe lethargy, change in body temperature and blood pressure.” –FPIES Foundation
Unfortunately, for me, I made this realization right before the holidays. That’s right everybody, I had to eliminate dairy from our diets before Christmas. No Christmas cookies, no Christmas dinner, no traditional Christmas breakfast that my mom always makes. It was a big deal to me. It was not something I took lightly or enjoyed. I had played around with the idea of eating cleaner and trying Whole30 before, but had always chickened out when it came to removing dairy. Well, now my choice was to eliminate dairy from my diet and continue breastfeeding or stop breastfeeding and find a viable formula option for my baby who now, I suspected, can’t have cow’s milk. For me, the only acceptable answer was to stop eating dairy along with my son. Unfortunately for people who can’t or don’t want to breastfeed, there aren’t a lot of good dairy free formula options. It can be very difficult to find a formula that works well and provides good nutrition for dairy allergic babies.
So I eliminated dairy. About two weeks in, I started seeing some improvement – not so much diarrhea, less irritable and gassy. And six weeks later… that’s right… SIX WEEKS later, things were normal. Why six weeks, you ask? Because it took around 2-3 weeks for the dairy protein to clear my system and another 2-3 to clear E’s. We are now dairy-free.
So now a conversation, with someone new who finds out about this allergy, generally goes like this. He’s allergic to dairy. Dairy? Yes dairy. So like… milk? Yes. And Cheese? Yes. And butter? Uh huh. And eggs? Nope. Not eggs? No… eggs come from chickens. Milk comes from cows. You’d be surprised how often people confuse that. I find it amusing, mostly.
So what IS a true dairy allergy? Dairy allergic or sensitive people are allergic to the protein in cow’s milk. It is NOT the same as lactose intolerance. “Lactose intolerance is caused by not having enough of the enzyme lactase, which is needed to break down lactose, the sugar found in milk and other dairy products. Milk allergy is a true food allergy caused by an allergic reaction to the protein in milk.” –Everyday Health
Ok, I bet I know what your next questions is… what DO you eat? Isn’t there dairy in EVERYthing?! There is dairy in a lot of things, but not everything and not even in some things that you’d swear it’s in. Eating dairy free at home was only a bit challenging in the beginning – once I learned what to look for, and how to read food labels, it became second nature. Eating dairy free when we are out is still VERY challenging and almost makes it not worth going out to eat, which is hard for me because my family enjoys eating out.
Here’s what I’ve learned about how to look for dairy on labels. The FDA requires that food allergens be clearly declared on product labeling. What this means for dairy allergies is that if the word “milk” or “butter” isn’t clearly stated in the ingredients list, they MUST put a statement below the ingredients list that says “CONTAINS milk”. It is VERY important to read ingredient labels and not just take products at their name because “non-dairy” items, such as non-dairy creamer, can still contain milk. That’s right. There’s no regulation on the words companies use on their packaging like “natural” and “non-dairy”. In fact, the industry now uses “non-dairy” to mean lactose free, often, which is of no help to me because it still contains dairy protein.
There’s another statement that ends up on a lot of food labels. The “May Contain” statement. This statement is something that a company can choose to include, or not, on their labeling as they see fit. May contain milk basically means that the product is processed on shared equipment with products that do contain milk and could have some cross contamination from it. This can be a problem for people with life threatening or severe allergies to milk. More investigation is usually warranted if someone with a severe dairy allergy wants to eat something with a “may contain” statement. A call or email to the company can help to discuss what their sanitation and testing practices are between share lines.
So, a quick look at processed food labels will generally show me if an item contains milk or not. I’ve taken the advice of other, more seasoned milk allergy moms and use the triple check method. I check food when I get it off the shelf at the grocery store – every time, because you never know when the company might decide to change the recipe, then check again as I’m putting the food into our pantry and check it once more before I serve it to myself or E.
Meats are not regulated the same way that other foods are, in the US. They fall under the jurisdiction of the USDA and have different rules. Why is this important? Because a lot of meat has dairy components in it. That’s right. Turkeys, hams, sausage, lunch meat, all can contain dairy protein and they don’t have to state it directly on the packaging. The only way to know if the meat you’ve chosen is dairy free is to have a conversation with the company, via email or phone to be sure, or to use a company that has openly declared that they don’t use dairy products, like Applegate Natural and Organic Meats.
So when we eat at home, we eat mostly meat, fruits, vegetables, pasta and some processed snacks that I’ve found that are safe. I make more of our food now than ever before, so we are definitely eating healthier, which is an advantage. When we go out during the day, I’m vigilant to bring our own snacks and lunch so that I won’t get stuck without something for us to eat.
Eating out at restaurants has become more challenging because even when I explain our dairy allergy, some restaurants are just not as careful as others about preparing safe food for us. We have found several go-tos around town that are willing and happy to help. Ciccio Cali gets it and makes it easy for me because their menu says right on it what is dairy free and what isn’t. Tampa Pizza Company offers vegan pizza. That’s right, I said, err… typed it, VEGAN pizza. Sounds gross? It’s not! They have vegan crust with delicious sauce, mushrooms, roasted garlic and vegan (soy based or non-soy based) cheese. It’s yummy! Mellow Mushroom has a vegan pizza too, also delicious. (Side note, it really blows a server’s mind when you order vegan pizza and add meat to it.) Boca Brandon is one of our favorite brunch places and they have been good about accommodating us with our allergy. I love to go on Sundays for brunch and get the steak and eggs. I can’t get the delightfully creamy grits with it anymore, but they sub potatoes instead and it’s still yummy. Far and away the place I visit more often now than I ever did before this, is Chipotle Mexican Grill. EVERYthing on Chipotle’s menu is dairy free except for the obvious items – sour cream and cheese. It’s so easy! I just ask that they put on new gloves since their last ones likely handled cheese and they are so kind about it. The best place I’ve found for food allergies all around – Disney World! The sit down restaurants at Disney are very allergy conscious and very accommodating. I can indicate online when I book a reservation that we have a dairy allergy and they flag it from the moment we step into the restaurant. We’ve had some of the most delicious restaurant meals at Disney since we went dairy free and we don’t feel like we’re missing anything.
There are some very interesting things that fall into the no dairy category that I would never have guessed. Oreos, that’s right – no dairy in them. Shocking, right? Or maybe not so shocking because I’m pretty sure there isn’t a lot that’s natural in Oreos, ha! Original Ritz Crackers – butter “flavored” apparently doesn’t actually include butter. A lot of microwave and movie theater popcorn doesn’t have any dairy. Just flavored oil – yum! Even more strange than those items that don’t contain dairy, are the unexpected places I found dairy. Ready? Wait for it… wine! Some wine. Not all wine. Let’s not get too crazy here. Some wine companies use dairy in the “fining” process of making wine. I’m not sure what exactly that is, but I discovered this little truth after I had gotten dairy out of our systems and E had a reaction to something. I couldn’t figure out what the problem was until I stumbled across the fact that the new bottle of wine I’d been enjoying that week (ok, ok it was really over two days…) was in fact from a company who uses dairy in their processing. Barnivore.com keeps a list, that isn’t yet comprehensive, but has a lot of brands on it, in case you’re interested.
In the beginning I thought a dairy allergy was going to be a devastating diagnosis for us. I was so sure that I would miss cheese, ice cream, butter, and milk shakes, and I do, in theory, but in my every day life I don’t feel like I’m missing out at all. And ultimately, I’m happy to do what needs to be done to keep my baby feeling happy and healthy. I did feel like once it all cleared my system, I wasn’t craving it any longer. I consulted my milk allergy friends a lot through the beginning of this journey and one even added me to Milk Allergy Mommas, a great facebook group for all things milk allergy related. I learned a lot from just scrolling through the board and reading posts, or searching posts to find answers. It was this group that helped me find my now favorite dairy free substitutes for so many things including, but not limited to, ice cream, chocolate, and even pudding! I also use godairyfree.org fairly often if I’m out and about and need to find something to eat. As far as cooking goes, I have found that almost any recipe can be adapted to be dairy free – even green bean casserole! Don’t believe me? I made this recipe hummusapien.com for Easter and my family gobbled it up without complaint. It’s also easy to search for Paleo or Whole30 recipes for good ideas and helpful substitutes. I even made pressure cooker butter chicken without butter! I subbed butter flavored coconut oil, instead of using ghee.
Going dairy free isn’t easy, but it turns out it’s not all that hard either. If you find yourself facing a similar challenge, take heart! Consult your healthcare professionals, talk to others who have walked where you are about to tread, and reach out for help. Hopefully E will outgrow this allergy, but even if he doesn’t, I now know we can handle it!