(@) nursing moms whose kids had a milk protein intolerance

[heyjude]

Hi! This is not Trump related! But it is about a baby!! 

Anyway, I am on week three of dealing with a baby (5 months) who seems to have developed a milk protein intolerance after having several poops with streaks of blood. The doctor has me cutting out all cows milk dairy (but goat cheese is okay). In the three weeks I think I have had 7 poops with blood streaks. I am finding dairy in hidden places (like the fish taco batter and sushi sauce, WHOOPS!). At first I was being lax but now as it keeps happening I'm getting more serious. Today we had another bloody poop and I can't trace it back to any dairy sources w/in the past 4 days. 

I don't know why I'm posting. 

But how did you deal with this? Did it go away? When? Does your kid still have a milk allergy? Does your kid have other food allergies? How did you personally handle going dairy free for your nursing baby? Do you have tips? Recipes? Hair pats? 

Thank you. 

[kimibrighteyes]

I had to do this with my twins. It is hard. So much hidden dairy. I was told not to use goats milk as it may cross react. I had to avoid butter and most margarines as they contain dairy. Earths balance is a good one. Things labeled vegan are good. I missed cheese the most. There is Daiya vegan cheese but it is a very poor substitute. I would make homemade pizza with it

Good luck!

[kimibrighteyes]

Also one twin outgrew his milk allergy by age 1. The other twin by age 3. Most kids outgrow it.

[heyjude]

Gah! The doctor specifically said soy milk and goat cheese were okay. I have been trying to avoid soy (stupid question, does that include soy sauce?) but I made a goat cheese risotto this weekend and have been eating that. Could that be causing today's issue? The Earth's Balance seems to also have soy. Is there a non soy version?

I feel like I can't eat anything!!!

Someone told me to avoid quinoa. Is that an issue?

It's starting to depress me.

[heyjude]

And thank you guys!!

[picksthemusic]

jennlin

She can help you.

[heyjude]

I just went back to read the doctor's email and she called it a "cow milk protein allergy or colitis." Not sure if that changes anyone's response. Thanks all!

[mnp555]

We dealt with mspi with DD. I cut out all dairy-- even goats milk, and was a lunatic about reading labels. We found out at 3 weeks and I started reintroducing dairy at 10 months-- like a few bites of cheese or a yogurt. She had weird poops but no blood. She still can't do soy at 19 months but has no other allergies and I fully believe she'll grow out of the soy too.

I ate a lot of whole foods to KNOW what I was eating: chicken, fish, veg, wine. I almost never ate out because I couldn't trust that someone in the kitchen wouldn't throw a pat of butter in something.

All the hair pats. DD was 7 months old and I was literally crying watching a neighbor eat pizza. It is hard but doable.

I have heard it runs in families, so if you do have another, most people resume the elimination diet about a month before EDD to avoid having bloody poops again.

Hugs and hth

[fayeelle]

Not a reg. here but just got past this hump with dd. She was MSPI from 3mths - 12mths. Basically trust nothing and no one but yourself. Lol. I laugh because otherwise I would cry.

Vegan products are typically safe from dairy, not usually soy. I ate the same thing for most meals almost every day. Lots of oatmeal with almond/coconut milk, coconut milk yogurt, applegate farms lunchmeats, Dave's killer bread, daiya cheese products (slices, pizza, mac and cheeze), lara bars, earths balance butter, black beans and rice, baked chicken, etc. Hidden dairy is everywhere and I poured over labels until I found things I liked that were safe and then stuck with those. I learned Papa John's crust and sauce were safe so we would do 1/2 with no cheese. Panera had 2 safe options as well as Applebee's.

MSPI mama has a lot of recipes and tips. I also got a lot of tips from a MSPI/reflux group.

[mnp555]

Earth balance red package is soy free

[Deleted]

Aug 2, 2016 14:39:28 GMT -5 heyjude said:

Gah! The doctor specifically said soy milk and goat cheese were okay. I have been trying to avoid soy (stupid question, does that include soy sauce?) but I made a goat cheese risotto this weekend and have been eating that. Could that be causing today's issue? The Earth's Balance seems to also have soy. Is there a non soy version?

I feel like I can't eat anything!!!

Someone told me to avoid quinoa. Is that an issue?

It's starting to depress me.

Soy sauce is soy, wheat, water and salt usually. Coconut aminos are a good but not as flavorful alternayive. Melt is a decent alternative to butter. No soy or dairy in it. I'm dairy, soy, wheat, and egg allergic so if have any questions about alternatives I can try and help.

[heyjude]

Aug 2, 2016 14:51:28 GMT -5 @246baje said:

Aug 2, 2016 14:44:11 GMT -5 heyjude said:

I just went back to read the doctor's email and she called it a "cow milk protein allergy or colitis." Not sure if that changes anyone's response. Thanks all!

When DD was tested the allergist said that if she was allergic to one type of milk protein it meant she could not have any animal milk the other protein was restricted to cow's milk. Luckily DD had an intolerance not an allergy.

Has your baby been tested?

No not tested. They looked at one diaper visually and made this determination. Which seems weird because it seems like intolerance and allergy can present the same or similar. Perhaps I should push for testing. SaveSave

[heyjude]

Now I'm even more confused because they ok'd goat milk and are calling this an allergy. Gah. I am going to call the doctor.

[sunshine608]

DS was and I was mostly dairy free until 11 months. I tested around 6 months b/c it was Christmas and I wanted mac and cheese, but I found it easier to just stay dairy free for my sanity.I started soy back around 8 months. Soy was never proven/tested I just wanted the bloody stools to stop so I gave it up.

I suspect he still has a mild intolerance to milk, but no blood in his stools.

It sucked but once I figured it out it was relatively easy. I always traveled with my own snacks and I kept a list of places/meals I could eat in my purse. IT kept me from eating out a lot which was good but I spent all those saving on Enjoy Life Cookies (j/k sorta- those things are $$ and I could eat a whole box in one sitting). I found that lots of things listed Gluten free were also dairy free so I tended to look for those. I ate really well and healthy- lots of lean protein, rice, sweet potatoes, chex gluten free oatmeal. My splurges were Wendy's Hamburger and fries ( dairy free) and oreos and I am not sure that I will ever eat either one of those again I ate them so much.

MPSI Mama helped me out and i tended to stick with the same rotation of recipes. I read every label and checked every website's menu. I still do.

[penguingrrl]

Oh no! That is so stressful and no fun at all! My middle one had both dairy and soy intolerances. I didn't have to go balls to the wall on hidden dairy or sit, but I had to avoid all obvious both dairy and soy sources.

She went from screaming allll the time in pain to a happy baby. so it was well worth it. She outgrew the soy portion around 14 months and the dairy around 18 months.

It took a few days to start to see an improvement but close to 3 weeks for full recovery. My pedi said that was how long it took to really get everything out of both of our systems. I definitely saw a difference.

As far as what to eat, I basically went without cheese or milk or yogurt because I didn't like the substitutes at all. I used almond milk in my coffee, which was tasty.

My favorite breakfast was steel cut oats (good for milk production!) mixed with dried blueberries and cooked in almond milk with a touch of maple syrup. Also, Oreos contain neither dairy nor soy!

I will say it was the best diet ever. I couldn't eat much, so I lost a lot lol!

[downtoearth]

Sorry - no direct knowledge of milk allergies, but we did maybe have a possible intolerance. It is so hard to figure out at this age and especially with nursing babes.

I did an elimination diet with two of my kids - DS#1 and DS#3. DS#1 was because of skin issues and it resolved itself - I think it might have been related to dairy b/c they came back with introduction of milk directly to the kid at 1 year, so we skipped a lot of dairy with him at first. He no longer has that.

With DS#3 I again did an elimination diet to try to figure things out - poop related - blood only once, but never had a solid poop from about 6 weeks until he was over a year. It sucked. I was bad at accidentally eating something on the list (like night shade veggies) that I wasn't supposed to introduce back yet. All told, it didn't work. We never really figured out what it was during the elimination period... until I accidentally cut out bananas (didn't buy them or eat them or give them to my solid-eating kid for about 10 days and noticed a difference). Yeah, the most benign fruit, which is part of a BRAT diet for helping after flu, was what my kid ended up have an intolerance for. Still does at almost 4 yrs old now - poop issues with bananas and banana bread.

[kimibrighteyes]

We were okay with soy so you may want to check with your doctor. I would be strict about avoiding dairy to make sure it is not that. It is very hard to do both dairy and soy. Quinoa should be fine.

[jln]

I had to do this with DS2. It started at 2 months and he was projectile vomiting repeatedly, had diarrhea, general fussiness, and the pedi suggested cutting dairy. It all stopped. So I continued to keep dairy out of my diet until he turned 1. My pedi said he's a sensitivity and not an allergy, and he may grow out of it by 2.

He still nurses before nap and bedtime. I don't have much dairy in my diet and he's fine and seems to be growing out of it a bit. But, now that he's eating foods he can't have any dairy or drink cow's milk. He drinks coconut milk (rarely) and eats lactose-free yogurt.

Hopefully your little one will outgrow it.

[ringstrue]

DS is allergic to milk and soy. I'm lactose intolerant, though I take a Lactaid frequently. It's really hard for me to be a nursing mom and not have pizza, honestly, since it's so calorie dense and I needed tons of calories. Having said that, me changing my diet was much more doable than trying to transition the baby to a prescription formula. They'd want to do tons of trials and I'd probably have to deal with lots of puking and diarrhea – not something I was willing to put my baby through.

I just sort of muddled through and started DS on hemp milk at about 11 months.

[heyjude]

Aug 2, 2016 15:38:48 GMT -5 @dontcallmeshirley1 said:

I had your exact situation, and I cut dairy for two weeks, with little improvement, so rather than attempt to cut soy as well, I weaned. Fast forward to the GI telling me that blood in poop is normal, pedis are too conservative about this, those test cards are too sensitive and that I probably didn't have to wean. That train left the station weeks ago, doc! Anyway, no real advice.

ARE WE THE SAME PEOPLE!!!!

[pitterwoo]

Yes, been there. DD who is now 26 months has MSPI. When she was newborn she just pooped constantly. Mostly mucus stools and spitting up were the symptoms here. Our doctor only suggested cutting back on how much dairy I was eating, so I did that for a few weeks, then I came here (MMM) and found out about soy being common with it and hidden being important. So I started cutting out both. I struggled a lot because I was so hungry with nursing, so I would mess up or have baked in/hidden soy/dairy and think it would be okay and it wouldn't. Even after I got pretty good at this I found my prenatal vitamin had soy lecithen in it. Argh!

If I had a do-over I would go really strict on both at first, then add back soy to see if that was an issue and then add back some cooked dairy and see how it goes. We are able to use goat milk and goat/sheep cheese with no problem. Maybe avoid it at first while you're sorting it out?

We would do a challenge every couple months, but she's always failed at the slightest amount, so I've just been having her avoid for about 6 months now and won't challenge again for a few more.

We did have a blood test and nothing came back for soy or dairy. Keep in mind that they need to be getting exposed to those foods for the blood test to be more accurate, so don't eliminate it all and then try to do a blood test in a couple months.

Hopefully you will get better guidance. Ours has been woeful.

Favorites: Hazelnut chocolate milk,
Manchego cheese from Costco - it's a sheep cheese and a good sub for cheddar, though it doesn't melt very readily,
most feta - but check the label,
cookies from Aldi that are wheat, soy, dairy free, I think they are called Live G Free. I like the Snickerdoodle ones.
Nature's Bakery Fig Bars (Costco)
Earth Balance in the red container as mentioned upthread
Thai food
Chipolte w/out cheese and sour cream. I always get a bowl, so I don't know about their burrito, but that's been our go-to place for safe eating out.
Whole Foods has a dairy/soy free chocolate pudding that was one of my few special treats.  It's almond based.  

[lurkingaw]

There is a huge difference between an allergy and an intolerance. It drives me crazy when even healthcare professionals interchange the two. My son has anaphylactic allergies to dairy and because doctors choose to label lactose intolerance as an allergy in people I can't get people to take DS1s allergy seriously. They will be like "a little bit won't hurt him. Probably just give him a tummy ache, right?" No. With an allergy a little bit will kill him. Ugh. Sorry. Pet peeve.

Anyways, when DS1 was a baby we found out about his anaphylaxis the first time he had milk-based formula. Strange thing was he was able to drink my breastmilk even if I ate dairy. And with every subsequent baby I would pump extra milk to give him and he handled it fine until #4 and one day had a reaction.

We now keep zero dairy in the house for his sake, so I'm nursing dairy and soy free by default for this baby.

Coconut oil makes a perfect substitute for butter in just about any baking recipe. We found hemp milk to be the most nutritious milk alternative when you consider protein and fat ratios. That's what DS1 drank as a toddler. Eating dairy free just takes some getting used to - you can still make yummy pizza without cheese and make lasagnas with veggie-based layers in place of cheese. There are delicious coconut milk ice creams - we like Coconut Bliss brand (the cherry amaretto and salted caramel ones are both amazing). Sorbets are also sometimes dairy free.

If you want any dairy free recipes let me know. We've been eating this way for nearly nine years. I've figured out how ti convert just about any recipe to dairy free by now!!

[lurkingaw]

Aug 2, 2016 14:42:01 GMT -5 @246baje said:

ETA we used coconut milk as a substitute.

ETA 2: DD is also allergic to egg and pineapple

DS1 was also allergic to eggs and pineapple. At one point his list was dairy, peanuts, eggs, soy, pineapple and tomatoes. By age 5 he had outgrown all but dairy and peanuts, which he is unlikely to ever outgrow now

I always thought the pineapple was so random.

[cville]

I had to cut dairy and soy for my first. ALL dairy and ALL soy. Even stuff that had soy lecithin or whey protein in it. The proteins are similar, apparently.

And I'm a vegetarian. And meat was grossing me out extra, for some reason.

It sucked. I won't lie. Whole Foods was my bff.

[shortcake2675]

Oh honey. I am a lurker but I was there 2 weeks into Kevin's life. He was both milk and soy protein intolerant. And all the way down to soybean oil and soy lecithin. And when that didn't completely eliminate his reactions, I did a total elimination diet. I ate turkey, squash, rice, garlic and olive oil for a month, then added the biggest suspects back in (gluten, corn, and pork, as I had replaced crisco biscuits with lard biscuits because I crave tortilla chips and biscuits while nursing). Once we found pork, I gave up on the total elimination for the most part after the big 8 and we were all soy free until I was able to add soybean oil back at 9m, then he nursed until 15m.

He still reacts with a red face and pimpley rash on his face, arms and legs if he has soy, with the red face and rash on his face coming from soy sauce and the extremities rash too from soy yogurt. He's 4. He can handle most milk products if the milk has been cooked or at least somewhat denatured. He's best with Parmesan cheese or baked milk like pancakes. If I make Mac and cheese, he's pretty good with the milk in the sauce since its heated up. Mozzarella can give us issues, but we just limit it. Ice cream and cows milk straight are no goes still, but he's recently been able to do cows milk yogurt in 1/2 cup a day quantities after a fail last summer.

His initial symptoms were a red rash that wasn't raw, but looked awful around his anus, small pimply rash on his face that flared after nursing along with a red flush to his cheeks, and streaks of blood in his poo.

I recommend the section on kellymomkellymom.com/health/baby-health/food-sensitivity/

Also, the cheat sheet on hidden dairy is a god send. I read every label. I quit buying pre made stuff and started more often with whole foods. Three weeks into the new diet, i quit violently craving cheese. Even now, I don't really like most of it. Parmesan is the exception. I have a fantastic soy sauce replacement recipe, and stir fry became a staple. I've tried bunches of recipes and found that hemp milk made a good sub for recipes needing whole milk. I hated the taste of alt milks by themselves. My vitamins had dairy in them. And the lack of soy lecithin in my diet caused me more issues with clogged ducts, so if you have issues, look for sunflower lecithin. Also, while the raw cashew sour cream was tasty, it was easier to just go without on my fajitas. We made a Greek inspired pizza with homemade no cheese pesto and no cheese. My kitchen aid pizza dough recipe is dairy and soy free. Restaurants are tricky, but chains often have their allergen info online. And a plain hamburger with my own canola mayo and a few pickles was my standard order for a while.

Hang in there. It gets better. I promise.

[mabillon]

I had to go dairy and soy free for my DD - she never had blood in her diaper but it was very mucuousy. That wouldn't have worried me on it's own, it was the eczema/rash (just like shortcake's picture) and the accompanying colic that drove me to it. If you've only been off dairy for four days, I wouldn't worry too much about it. I definitely didn't start to see results until closer to a week and her skin didn't clear up until closer to two weeks. I ate a big stir-fry for dinner after about a week and realized after that, soy was a problem too. It was a total bummer to give up both but I did really get used to it. Most of the pp's nailed my suggestions on what to eat. Dairy and soy free formulas are pricey and while some insurance companies cover the cost, mine didn't so diet was the best option.

She grew out of the soy sensitivity first (around 10 or 11 months) and grew sufficiently out of the dairy sensitivity that I was able to add in butter and baked-in dairy around 11/12 months. Her skin will still flare up if she drinks cow's milk or eats ice cream and pizza two days in a row. Aside from ice cream though, she just doesn't have a taste for dairy and will usually peel off cheese from pizza, only drinking milk when it has chocolate.

FWIW, it's not a lactose intolerance as I saw mentioned. Definitely milk protein. We had her tested at age 2 and the allergist said tests aren't really reliable before that age. She wasn't allergic, just sensitive.

[jennlin]

Aug 2, 2016 14:43:03 GMT -5 picksthemusic said:

jennlin

She can help you.

hi! my daughter was cow's milk intolerant..still is! she's 4.5 now. i nursed her for 4 years..my son was soy and egg intolerant, i nursed him for 2.5 years..most of that overlapping (tandem nursing), which means i was milk, soy, and egg free for about 2 years. torture. torture i tell you! my son is still egg intolerant at 2.5.

my daughter gets very bad eczema and some for of a stomach ache when she has cow's milk. my son's eczema with egg is DISASTROUS, but no upset tummy, and the eczema doesn't seem to bother him..even though the dry patches get so dry they split into open wounds..he doesn't seem to notice unless we put lotion on it without realizing it had split, then it burns.

i would say to survive some milk issues, go for asian food! for the 2ish years that i did not have milk, but could have soy, i liiivvvved on chinese food (it helps that i'm chinese....). most asian foods do not have any milk in it...and i also had lots of salad with no dressing (most dressings..even ones that look safe, have traces of milk in it). i would have the leaves, and then make extravagant toppings.. 2-6 different types of beans, peas, corn, baby corn, beets, hard boiled egg..lots of goodies to give the leaves moisture and flavor.. then add crunch like sunflower seeds, home made croutons (just over toast some bread, you're good)..shred some chicken on top....fancy fancy salad. then eat the same thing for a week straight, since you have all those opened cans of beans lol.

when i couldn't have soy, i went to pretty much salads or steamed veggies, rice, and a plain protein. i went insane, but eh. oh well. i think.

one perk i had, which doesn't work for everyone, is that i lost a LOT of weight going dairy free.

i am still mostly dairy free now, even though i'm FINALLY not nursing anymore...it's just a healthier choice. good luck, hang in there!

[granthamite]

I had this with my oldest son, though he didn't have the bloody poo. Ultimately I had to eliminate dairy AND soy from my diet. Something to do with the proteins being very similar. It wasn't easy, but certainly doable. I looked for the Kosher dairy symbol on packages, and things like casein in the ingredients. Small traces seemed to be ok for my son, but you may find your child's sensitivity to be greater. I went to an LLL meeting and found a fellow dairy free mom who helped me a lot. I have been lactose intolerant for years, so I was already eating minimal dairy. 

[anonymous]

My son was on prescription formula for this-neocate.  It solved is problems and he was able to move to cow's milk at a year.

if I had known then what I know now, I would have tried following the whole 30 diet/recipes-they are dairy and soy free.  If that's a route you want to try I would be happy to share some good recipes.

[heyjude]

Thank you guys all SO MUCH!!

I took her in the Doctor yesterday after two more bloody poos. We got to see our regular pedi this time.. The pedi looked her over and decided that she has a fissure which was causing the blood most likely. I can once again consume dairy. But her poop is kinda mucussy and so we will be doing a poop sample for analysis.

So. Not entirely sure where this leaves us. But your responses have been so helpful and encouraging.

Thank you all!!!!!!!