Our Experience with Dairy Intolerance

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Early Days

I always like to preface pieces like this by stating that I am not a medical professional so please don’t take this as medical advice. This is foremost my personal experience as a mother to a baby and now toddler with a dairy intolerance. However, the information I am presenting is based on my personal experience alongside the advice and information provided by several pediatricians, three pediatric gastroenterologists, two pediatric allergists, several International Board Certified Lactation Consultants, and conversations with over a hundred mothers with children with varying degrees of dairy intolerance and dairy allergies. After sixteen months of parenting with a dairy intolerance, I do feel I have learned quite a bit and from recent conversations I’ve had with our readers, it has become apparent that we are not alone. I hope this information is helpful and as always, if you have any questions please comment or send us a message directly. And now, on to our story!

My daughter’s first days in the hospital after her birth were different than I anticipated. The first day she was a sleepy newborn but by the following day she was inconsolably crying, refusing to nurse, and only content when we were moving. This situation worsened when we got home as her cries sounded like she was in pain, she arched her back while crying, spit up spectacular amounts (sometimes projectile), couldn’t sleep for more than 15 minutes at a time, and couldn’t seem to get comfortable in her body. I’m telling you all of this in such detail because this is how we knew something was off. We went to the pediatrician who dismissed my concerns as a “laundry problem” and told me it just took time for newborn’s systems to get “online.” I have since heard so many first time moms share similar conversations with their pediatricians when they voiced concerns. I think this is a topic for a different post but I will say that if you feel in your mama gut that something is wrong, don’t let a doctor dismiss your concerns and if they won’t address them adequately, go see someone else who will. Our doctor recommended Zantac and Gerber probiotics and sent us on our way. The idea of medicating our days-old daughter without figuring out the root issue was alarming to me so I called a pediatric GI doctor and made an appointment.

Eliminating Dairy

The GI told me that her symptoms did align with a bad case of reflux and that she would also recommend Zantac to ease the discomfort. But she also recommended eliminating dairy from my diet for a few weeks to see if it made a difference. She explained that not all babies can digest the protein in cow’s milk and that the protein is transmitted to the baby through a nursing mother’s breastmilk. The technical definition is, “an abnormal response by the body's immune system to a protein found in cow's milk, which causes injury to the stomach and intestines.” Most formulas are also cow’s milk based, unless your baby is on a hypoallergenic, elemental, or soy based formula. Additionally, the proteins in soy are very similar to those in cow’s milk so many babies also can’t tolerate soy. If you want to learn more Google “Cow’s Milk Protein Intolerance” or “Milk Soy Protein Intolerance.”

Most people think of lactose intolerance when thinking about dairy intolerance. However, lactose intolerance is virtually non-existent in infants because there is lactose in breastmilk so babies produce the digestive enzyme lactase to break down the lactose. A lactose intolerance arises after age five as the body slowly stops producing enough lactase to digest breastmilk since the body assumes that the child is no longer breastfeeding and we are actually not designed to ingest the breastmilk of other animals. (Although plenty of people do so without an issue.)

Just to be safe, I eliminated dairy and soy from my diet completely. You would be amazed at how much hidden dairy and soy exist in our food. It forced me on to a whole food diet because most processed foods are still made on shared equipment and in order to be sure that Lilly had a true intolerance/allergy, I wanted to completely clear both our bodies of these proteins. This GI doctor also suggested I give Lilly hypoallergenic formula in the meantime. My gut told me that my breastmilk was still best for her so we waited out the weeks as our bodies cleared and continued exclusively breastfeeding.

To be honest, I didn’t see a huge difference after we eliminated dairy this early on. She was colicky so I had a difficult time seeing the difference but when I tried even a little bit of cheese after four weeks of being dairy free, I was able to identify the difference. For us, that difference was that she was back to moaning in pain especially as she tried to sleep, her cry was more pained and severe, and she would arch and move her body in a certain way. Oh and the spit up, woah, the spit up.

Some other signs to look for that we didn't personally encounter are: blood or mucus in the baby’s bowel movements (if you suspect a MSPI, definitely consistently check your baby’s diapers for these signs) and eczema-like skin rashes. You can have your baby’s stool checked for microscopic amounts of blood since often in MSPI babies it’s there but you can’t see it with the naked eye. It’s important to catch this intolerance/allergy not just because it makes baby’s miserable but also because repeated exposure to proteins that they cannot digest can actually damage the digest tract and in severe cases can lead to failure to thrive.

Slip-Ups

So we were dairy and soy free for eight months save for a few slip-ups. I want to talk about slip-ups because they were such a devastating and stressful part of the dairy-free life as a breastfeeding mother. Every single slip-up occurred when eating out so I became very reluctant to eat out. Make sure to stress to your server that you have a severe allergy and clarify that this means no butter or cheese. For some reason people seem to think of dairy as milk but not the foods that contain it. Also, eggs are not dairy and were safe for us — for some reason people often thought they were dairy. I can’t speak to egg allergies but I know these can also be an issue for babies.

Being dairy free was not easy for me even if I knew it was right for my baby. I joined several Facebook groups that were helpful in some ways but I consistently did not find it helpful when moms would say that this should be easy because it’s the right thing for our babies. Of course I wanted to do right by my baby, but as a sleep deprived breastfeeding mother, not being able to order food in or eat at a restaurant and having to prepare every meal at home was challenging and frustrating at times. That said, it is completely doable and I did it mostly successfully for eight months. For some ideas for simple swaps for going dairy-free, check our this post. Although I often found some of these Facebook groups to be a bit judgmental, they do offer a wealth of knowledge about sources of hidden dairy to look out for, what to order at restaurants, dairy-free recipes and general solidarity when stuck on a restricted diet and coping with an often sick baby. My favorite was called “Dairy Free Diet-Breastfeeding.” Just don’t ask for advice about formula as these groups are very strict about only discussing breastfeeding.

Weaning and Formula

At eight months Lilly had weaned herself from breastfeeding despite my greatest efforts to keep going and I decided to reintroduce dairy into my diet. I actually found that when I was off dairy my skin was much clearer and I was much less congested! I’m not going to lie to you, I eat dairy regularly anyway now. I enjoy it and being dairy-free was definitely not a sustainable diet for me. That said, if my next baby requires it, I’ll absolutely do it again.

Weaning from breastfeeding meant I had to find a suitable formula for my dairy-free girl. I knew a soy-based formula wouldn’t be a good option since I wasn't 100% sure that she didn’t have difficulty digesting those proteins so I began to look for other options. It turns out that outside of soy, nearly all formulas are dairy based. However, fully hydrolyzed formulas breakdown the protein in dairy into such small particles that the body doesn't recognize the proteins as allergens and most MSPI babies can digest these formulas. These formulas in the United States includes Nutramigen and Alimentum. I was quite disturbed by the ingredients listed in these formulas, particularly the high levels of corn syrup and other additives. I also wanted an organic formula if possible.

After extensive research, I found the German brand Hipp made a hypoallergenic formula that contained exclusively hydrolyzed protein. The kind we used can be found here. It comes in Stage 1 for infants under six month and Stage 2 for infants over six months. Another brand that has clean ingredients and hails from Europe is Holle. We didn’t try their formula but I have heard only good things. A few words about ordering European formulas: (1) Do your research and make sure you are purchasing from an authorized retailer. There are fake formulas sold.; (2) Don’t order too many boxes at a time or the FDA will hold it for inspection and it will take a long time to get to you.; (3) It is expensive. There is also a Facebook group for discussing these formulas called “Holle and Hipp Formulas” which was useful for finding reliable websites to source from among other information.

We were fortunate that Hipp worked well for Lilly and we never had to go on to explore other options. However, a small subset of babies with MSPI are unable to tolerate even hydrolyzed dairy and will need amino acid based formulas, also known as “elemental formulas.” These include Neocate and Elecare in the United States. I do not know if the European brands have elemental formula options but I would have looked into it if necessary.

Transitioning off Formula

If Lilly didn't decide to love her bottles around 11 months, I would probably just have transitioned off milk completely. While milk is a convenient source of calcium, protein, fats, and vitamin D, babies do not need milk once they wean from breastmilk after the age of one. However, many babies still want milk, like ours, so alternative milks are an option. With my next child, even if they can tolerate dairy, I will not be introducing cow’s milk after one. Cow’s milk isn’t designed for baby humans, it’s designed for baby cows and as such it’s not a perfect food for human babies the way human breastmilk is. Casein and calcium in cow’s milk can actually block iron absorption, which can cause developmental delays. If you look at the history of humankind, there’s a much stronger history of not consuming other animal’s milk. It wasn’t until the industrial revolution that cow’s milk became prevalent and we have actually adapted to continue producing lactase past age five to aid in that digestion, but we really weren’t meant to digest other animal’s milk. There’s nothing wrong with drinking cow’s milk but it’s certainly not necessary as a replacement for breastmilk or formula after one.

A lot of people are concerned that their child won’t get enough protein without milk but that’s unlikely. Toddlers only need 10 grams of protein a day. This can be achieved easily with eggs (1 large has 6 g), chicken breast (3.3 oz. serving has 31 g), hummus (1-oz. serving has 2.4 g), oatmeal (1/2 cup serving has 3 g), brown rice (1/2 cup serving has 2.5 g), or beef (3 oz serving has 22 g). The other main concern cited is calcium. Toddlers need about 700 mg per day. This can be achieved through dark, leafy greens (2 oz serving has 90 mg), broccoli (3 oz serving has 48 mg), and almond butter (1 tbsp. serving has 56 mg). Many other foods contain lower levels of protein and calcium so throughout the day they should be getting what they need from a well-balanced diet.

So what alternative milk to choose? The key considerations are calories, natural sugar content and protein. For reference, cow’s milk contains 130 calories, 12-13 grams sugar (natural, not added), and 8 grams protein. The options for plant-based milks are: soy, rice, almond, cashew, coconut, pea, and hemp. Soy milk was not an option for us but may be an option for some and is worth looking into. We opted not to use rice milk because of the trace levels of arsenic found in many rice products today. Lilly didn't like coconut milk (our first try), so we ended up with almond milk. Cashew milk would have been my next try. I’ve heard hemp milk can also be a good option but that it has a polarizing taste. No matter which milk you choose, make sure there is no added sugar (typically cane sugar) and no carrageenan.

Transitioning to Animal Dairy

Although I won’t give Lilly straight cow’s milk to drink, I do hope she can eventually tolerate dairy in her food. Being dairy free is challenging and I want her to be able to enjoy a variety foods if she wishes. I’m nervous to reintroduce dairy but after speaking to her pediatrician and after much research, we are going to try the dairy ladder. The dairy ladder is a UK-based concept for reintroducing dairy to see what can be tolerated.

Fortunately, cow's milk protein allergy resolves in 90% of children by age six. Fifty-percent of infants will have tolerance at one year, and more than 75% will have resolution by age three. We plan to try the dairy ladder at 1.5 years and we will let you know how it goes!

Allergy Testing

Just a quick word on allergy testing. We had Lilly tested via a skin test which did not reveal a true dairy allergy so it is likely an intolerance. We are going to see another allergist and may do a blood test which can measure the immune system's response to milk by measuring the amount of immunoglobulin E (IgE) antibodies in the blood. But neither test is completely accurate in identifying a milk allergy and that accuracy is even lower when testing infants. Further, allergy testing won’t identify an intolerance.

Conclusion

So that’s our story (in very abbreviated form). I left out all the times I cried because a restaurant put butter in my food, the nights questioning if I may have had dairy because she was screaming for hours, and some of the other fun parts of mothering with a dairy protein intolerance. I won’t lie and say it was easy to breastfeed with a dairy intolerance but it was definitely worth it. Again, if you have any questions please don’t hesitate to ask!