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September 11, 2014 marked the day I was able to finally eat and drink dairy products again. It felt like a long time coming and I was craving a multitude of dairy-filled treats, from cheesecake, lobster rolls, Popeye’s, to Thai Tea.

Whoa, Whoa – Back up! Why Dairy?

Jia, like many infants, was unable to tolerate the dairy and soy that I ingested, that passed to her through breastmilk. In reality my non-soy and non-dairy diet hasn’t been ALL THAT long, but for the past 4 months, I had to restrict my diet of anything containing soy or milk ingredients. For Jia, her intolerance manifested in blood-streaked diapers resulting from the inflammation in her gut when I ate these foods. For other babies, it can mean a lot of spitting up, gut pain and discomfort, wretching/vomiting, and even baby developing a fear of breastfeeding. 

When she was about 1 month old (in March), Jia was a heavy spitter and even threw up (think: projectile) a couple days in a row either in the day time or even at that 3 AM feeding. I decided on my own to start cutting out dairy, advice that I found through a quick google search on reflux in new babies, and at the advice of one of my close friends Berry (who is a NICU nurse). Her baby was so scared to nurse because it was causing her so much belly pain, and poor Berry even had to cut out gluten, tree nuts, eggs, shellfish, fish, corn, and other nuts. (MAD props to Berry for going that distance for her adorable little baby!!!). She said that a (+) hemoccult (lab test) was confirmation for her baby, who didn’t have any visible blood in her stools, and that testing this sooner rather than later was beneficial to baby – they hadn’t realized Maddie’s allergy until she was 3 months old. 

Our pediatrician said that her spit up “wasn’t abnormal”, and that a breastfed baby WILL spit up since they have no way to tell if they are full and their bellies aren’t stretchy to accommodate more food than it can hold, like ours are. Parents of bottle-fed babies see how many ounces their baby drinks. I asked the MD if he could humor me (for peace of mind) and just run a hemoccult test (also known as a stool guaiac) on her stool (to test for the presence of blood not visible to the naked eye, to confirm a dairy intolerance). The test was negative.

Then, come the last week of May (Jia was now 3 months old), I started noticing not-so-pleasant bloody diapers:

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No, it didn’t freak me out – mostly because she was still a very happy smiley baby, she was feeding well, she didn’t look pale, she didn’t appear to be losing weight, there wasn’t much blood (what I consider to be “a lot” as a nurse), and she didn’t appear to be in any pain. Now, It probably helps that the sight of blood doesn’t make me flinch. I made an appointment with the pediatrician after seeing diapers like these for a week (there were sometimes tiny spots of blood, or small streaks. The bloody diapers were about one every two days), and the nurse practitioner told me to go ahead and start cutting out soy and dairy. 

So since there are many parents going through the same thing, I wanted to share our experience and progression throughout the process.

Our Timeline:

End of March (1 month old): I noticed reflux, throwing up on occasion. I decided to cut out dairy (cheese, milk, yogurt, etc).

April 2 (1.5 months old): Post- 2 nights in a row of vomiting, MD said that spitting up is normal, even “vomiting is normal three times a day every day [in breastfed infants]” (-) hemoccult test. Resume normal diet.

April 24 (2.5 months old): visible blood in diapers, streaks, spots, made MD appt 1st week of June. No need to run hemoccult test (obvious blood, confirmatory for intolerance). Cut out major dairy and soy products (No dairy/soy yogurt, dairy/soy cheese, dairy/soy milk, etc)

May 15 (3 months old): Over the past couple weeks I notice amount of bleeding increase and decide to immediately cut out ALL sources of dairy and soy. I kept my same doctor’s appointment for 3 weeks from the last one (May 15). Reading ingredients labels, I stopped eating chocolate, Subway (the breads have crushed soybeans and milk), regular sandwich bread, etc. Any label that said “May contain traces amount of milk/soy” or “Made on shared equipment with milk/soy” I didn’t even touch.  I read that soybean oil was usually fine for babies, so I still ate Chipotle if I wanted to eat out. 

Our May 15 pediatrician’s appointment confirmed continued (+) hemoccult samples. The MD ordered blood tests (an Eosinophil count, to check for inflammatory/allergic response and hemoglobin/hematocrit to check if she was losing too much blood where she was anemic). The results: Eosinophils were definitely elevated (+ for allergic response) and blood counts were good (not losing significant amount of blood). I was to go completely Soy-Free and Dairy-Free (SFDF) diet but cut out all sources completely. 

This included reading the actual ingredients labels for soybean oil, soy lecithin, milk solids, cream, and lecithin. People with soy allergies are actually able to eat products containing soybean oil (or even soy lecithin) because the soy protein is broken down to where it doesn’t cause a reaction, but Jia’s pediatrician said to cut out everything to be on the safe side. Sadly, this meant I couldn’t even eat at Chipotle (they cook everything in soybean oil).  

June 16 (4 months old): Follow up appointment, we still had (+) hemoccult tests. Continue no soy/no dairy, til she’s 6 months old.

July 24 (5 months old): I brought in three diaper samples (the 3 days leading up to the appointment) and we had 2 (-) hemoccult and 1 (+) hemoccult on the diapers. We were moving in the right direction, so I had to continue with no soy and no dairy to be safe, until Jia was 6 months old (when infants usually grow out of the soy/dairy intolerance due to improved gut maturity).

August 13 (6 months old): All (-) hemoccult diapers! The nurse practitioner gave me a choice of which to re-introduce: soy or dairy. I chose soy, because according to my earlier research, about 50% of infants with a milk protein intolerance have an accompanying soy intolerance. I figured our chances were better that she was OK with soy but not with dairy. BRING ON THE SOY! This opened up a lot of doors for me. I no longer had to cook every single meal at home, I could actually go to a restaurant and JUST be restricted from milk. It was glorious and life changing!

September 11 (6.5 months old): (-) hemoccult diaper samples! I was home free to enjoy some pumpkin cream cheese and regular pumpkin spice lattes, wohoo! The doctor said I no longer had to schedule appointments for her unless I see the return of blood. She said that if Jia still has an intolerance to dairy I will notice it right away in her diapers.  I felt free, it was so unbelievable that Jia’s next appointment was for a WELL-BABY EXAM, not a follow-up!

Background on Soy and Dairy Intolerance (AKA MSPI: Milk/Soy Protein Intolerance; sources at the end):

In the US, cow’s milk, soy, and rice food allergies are the most common in infants, and symptoms of milk and soy protein intolerance usually start once baby is a month old. Most problems associated with this intolerance seem to disappear after the food culprit is removed from the baby’s diet. Below is a brief summary of MSPI in general. 

Completechildrenshealth.com, a pediatrics practice based out of Nebraska, has a really good overview on MSPI. They say that 2-7% of babies have a cow’s milk protein intolerance, and of those children, 60% of those have an accompanying soy protein intolerance.  Milk protein intolerance is the most common cause of food intolerance in infancy, as stated by Today’s Dietitian and in two studies in the National Institutes of Health’s Library of Medicine published in Current Opinion in Allergy and Clinical Immunology and published in The College of Family Physicians of Canada. Soy is a close second in leading food allergen problems in babies. Completely believable, since Jia isn’t the only baby in our circle of baby friends with this problem!

Typical presentation includes: diarrhea, weight loss, crying/colic after feeding, congestion, vomiting, reflux, skin rashes, changes in appetite, refusing to eat or eating a lot, irritability/fussiness, and blood in stools (sources below). As mentioned earlier, Jia had bloody stools but was otherwise a happy baby.

Milk Protein Intolerance ≠ Lactose Intolerance! Lactose intolerance is a deficiency in lactase, the enzyme that breaks down the lactose sugar in milk. Milk protein intolerance is an intolerance to the actual protein itself. Lactaid milk, for example, doesn’t have the lactose in it, but it still has milk proteins (which is why the commercials advertise “it’s really milk!”).

Testing is limited to testing stool samples, which isn’t a test specifically for milk or soy reactions. A stool sample checking for the presence of blood only lets the practitioner know if there is some sort of inflammatory response occurring in baby’s intestinal system. Like I mentioned, we also had an eiosinophil count, to tell if inflammatory markers were present in the blood. As described in the article “Definition, etiology, and diagnosis of food protein-induced enterocolitis” published in Current Opinion in Allergy and Clinical Immunology, though not specific to milk or soy protein intolerance, the eiosinophil count is elevated in the intestinal tract representing the presence of IgE-mediated food allergens (allergy antibody) and other GI tract abnormalities, and that specific IgE testing (allergy testing) should be carried out if the food culprit is not identified. 

Both Medscape and Today’s Dietitian state that an exclusion diet is the biggest indicator of problems and simplest method to use.  Doctors will tell a breastfeeding mom to start with milk and soy. Then like we did, you test again for the presence of blood after the gut has a couple months to heal after no exposure to these allergens. You keep testing to see if there is improvement in stool samples or symptoms, and if these worsen, then the next popular foods to cut out are nuts, wheat, eggs, and fish. Then, after stools improve or time goes on, mom slowly adds these foods back into her diet one-by-one with the instruction of baby’s pediatrician, and watch for problems. 

Today’s Dietitian writes that it typically takes two to four weeks for the infant’s system to improve after mom has excluded soy and milk completely from the diet, or after starting formula supportive of milk and soy protein avoidance (Children’s Healthcare of Atlanta lists Alimentum, Nutramigen, Pregestimil, Elecare, and Neomate). Milk protein itself stays in mom’s breastmilk for about two weeks, too. So it makes sense that two weeks after excluding milk and soy plus another two to four weeks allowing the gut to heal results in about 4-6 total weeks before symptoms can be expected to be gone. 

Baby’s Weights are important to monitor (at frequent follow-ups with your pediatrician), to ensure your baby is thriving and growing as expected. I enjoyed going to the pediatrician’s so often. That way, my husband and I got to play “how much do you think Jia weighs today?” every few weeks and we got to see where she fell on the growth charts (and inform eager grandparents on how big our little 30th percentile heavyweight was getting), plus we got all of our side-questions answered at our visits. 

Foods that were MUST-HAVES: As an avid breastfeeding mom, it was never a question of whether or not I would continue to breastfeed Jia throughout her intolerances, as few or many as they may be. That being said, transitioning to a diet completely excluding milk and soy ingredients is very challenging.

Today, almost all processed foods contain either milk or soy, and most foods often include both.  Soy itself is a really cost-effective ingredient, filler, emulsifier, and preservative for food manufacturers, so that’s why it is so present in nearly everything. It forces you to cook all your meals at home and to get creative with dinner. It also forces you to identify what foods are “allowed” and are therefore your survival items. Below, I have listed some of the products I tried to always keep stocked in my kitchen.

Unsweetened Almond Beverage (Trader Joe’s unsweetened is the tastiest for me)

Cereal: Trader Joe’s Mixed Berry O’s, Trader Joe’s Gluten Free Granola, and Barbara’s Peanut Butter Puffins (if it was made in a facility that processes milk or soy I felt like that was OK for me)

Coconut Yogurt (Trader Joe’s is the best, So Delicious brand was REALLY bland, in my opinion)

So Delicious Soy Free Dairy Free Minis Coconut Almond Bars (These are AH-MAZING… I bought these 2 boxes at a time, 4 bars each. I would’ve bought more but bags of breastmilk were overwhelming my freezer) and Green Tea Frozen Dessert (ice cream) 

Earth Balance Soy Free Dairy Free Spread & Earth Balance Soy Free Buttery Sticks: for toast/garlic bread, and for baking

Trader Joe’s Organic Blue Corn Tortilla Chips

Salsa, hummus, guacamole

Udi’s Soy Free Dairy Free breads (sourdough & honey whole wheat were my favorites, but all their breads are SFDF)

Artisan breads like the focaccia or sourdough at Trader Joe’s (or other places) are SFDF

Trader Joe’s Garlic Naan (frozen section)

Trader Joe’s Vegetable Masala Burger topped with Mango Ginger Chutney

SweetGreen salad bar cafe makes their dressings without soy and dairy. They read off the ingredients one-by-one for me, including their “oil blend” for their meats, dressings, etc. I got the Lime Cilantro Jalapeño and Carrot Chili Vinaigrette from SweetGreen (what I normally got pre-SFDF) and they’re both completely safe. 

Some Lara Bars are safe (chocolate coconut macaroon (the crunch in it is made with pea protein), peanut butter chocolate chip and chocolate chip cookie dough; their chocolate is made with unsweetened cocoa powder and cocoa butter, not milk)

Coconut Oil for baking and cooking (I love Trader Joe’s Organic Coconut Oil)

Costco organic sliced bread

Costco Kirkland brand Organic All Beef Hot Dogs are SFDF

Premio Spicy Italian Sausages at Costco; SO GOOD!!

Stacy’s Pita Chips (especially the sugar & cinnamon ones, to satisfy that sweet tooth)

Enjoy Life Chocolate Chips (because almost ALL chocolate has soy lecithin in it, and obviously milk in milk chocolate. I would melt these in a little bit of coconut oil and dip a banana into it for dessert)

Trader Joe’s Top Sliced Whole Wheat Hot Dog Buns (I discovered this after I was allowed to have milk, I’d been eating hot dogs wrapped in slices of bread!)

Trader Joe’s Organic Marinara sauce (the only one that doesn’t have soybean oil in it, even all the sauces at Whole Foods had soybean oil!!)

Amy’s Kitchen: Vegan Margherita Pizza (SFDF), it is SO GOOD! Made with Daiya cheese.

Amy’s Kitchen: Orange Cake is REALLY tasty! When you’re SFDF it’s hard to find desserts to satisfy a sweet tooth.

Don’t feel like cooking lunch or dinner? Head to Whole Foods‘ prepared food bar. They label all of their foods and include every ingredient. This was a lifesaver in a pinch.

Interesting SFDF Products I Used

Coconut Secret Raw Coconut Aminos (sub for soy sauce, thanks Berry!) found at Whole Foods. This means you can eat sushi (just not any tempura-fried items if they are fried in soybean oil)!!!!

Daiya Tapioca Mozzarella Style Shreds (I drizzled olive oil on SFDF bread and sprinkled this on with some garlic powder)

So Delicious brand items (careful, some items are not dairy-free)

Udi’s breads (they are also gluten-free)

Daiya Cream Cheese Style Spread and Cheddar Style Slices (to satisfy that grilled cheese craving… I’m not a big fan of either of these, in my opinion, just wait until you can have dairy again for these things)

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I really hope this post helps those of you who have been teetering between excluding soy and dairy for your little one or helps guide you to ask your pediatrician questions on the topic. Please, as always, send me a message through my contact me page if you have any questions or feel free to leave a comment! Since this blog is still getting its footing, I love and appreciate comments so I know that this is going in a helpful direction! Plus it’s really validating :)

A special thank you goes out to my husband Jeff for being so supportive. I don’t even remember him asking even once if I was “sure” I wanted to continue to breastfeed even when I got cranky and frustrated with being forced to cook dinners 90% of the time and struggling to find snacks I was allowed to eat. He has always stood by me in my determination to breastfeed Jia throughout this whole process. He knew it was a sacrifice I was happy to make and helped to creatively find ways for us to get to the Whole Foods in Brooklyn so I was fed for our first SFDF weekend away from home. Thank you. 

Next Week’s Topic: Sleep Training

Sources:

Non-IgE Mediated Food Allergy: FPIES. Nowak-Wegrzyn A., Konstantinou K. Curr Pediat Rep. 2014, 2: 135-143. (http://download.springer.com/static/pdf/621/art%253A10.1007%252Fs40124-014-0043-y.pdf?auth66=1412541565_60ca2c4b2a608296de6fa1ea430df67b&ext=.pdf)

Children’s Healthcare of Atlanta: Milk Soy Protein Intolerance: http://www.choa.org/Child-Health-Glossary/~/media/CHOA/Documents/Child-Health-A-Z/Special-Diets/Milk_Soy_Protein_Intolerance.pdf

Review: Definition, etiology, and diagnosis of food protein-induced enterocolitis syndrome. Feuille E., Nowak-Wegrzyn A. Curr Opin Allergy Clin Immunol, 2014. 14(3): 222-228. (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4011631/pdf/coaci-14-222.pdf)

Clinical Review: Approach to milk protein allergy in infants. Brill H. Can Fam Physicians; 2008 (54)1258-64.  (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2553152/pdf/0541258.pdf)

Medscape on Protein Intolerance (includes overview, diagnostics, workup, treatment, pathophysiology, etc)

Today’s Dietitian: Recognizing Cow’s Milk Protein Allergy in Infants