A casein-free (hopefully) success story!!!

I will admit: when someone tells me of their g.i. problems, my first thought is often, “Maybe they have celiac disease!” But, it’s not always that, of course.

A friend of mine has a son who just turned three months old. From birth, he’s had trouble nursing, and has gained very little weight, staying at the 5th percentile. Throughout his tiny life, he has been so ill, and often screams for hours at a time. Since he’s been born, she has only been to church a handfull of times. Her dear baby boy has just been too sick! My heart so goes out to her, because as she would describe both her pain as a mother, and his pain, I had major flashbacks to when Wesley was a baby. We both had little boys who were in obvious digestive pain, who seemed like they wanted to eat, like they were hungry, but who would also violently, and with screams and tears and thrashing about, refuse to nurse… It’s so heart-wrenching to be in that situation. But as she described further to me his symptoms, I thought (and said), “It sounds like an extreme milk intolerance!” Not simply a lactose intolerance, but a milk-protein intolerance — a problem with casein. You can take the lactose (milk sugar) out of milk fairly easily, but you simply can’t take the protein out of milk and still have it be milk.

Now two years old, my daughter Audrey had symptoms similar to my friend’s son, even though I was on a gluten-free diet. Obviously, she wasn’t getting gluten. It was suggested to me by a couple other homeschooling moms (via an online forum) that she might have an extreme intolerance for milk. So, when she was five weeks, I went totally milk-free. She improved dramatically, and quickly so. The entire 21 months she nursed, I ate a completely dairy-free diet. (In fact, it was our experience with Audrey that led us to discover that dairy was the source of my 6yo son’s asthma! He went from 1-3 breathing treatments a day — and the urges of his pediatrician to medicate further — down to having virtually no asthma symtpoms at all. But, that’s another story…)

Five or six weeks ago, I suggested to my friend that she try going dairy-free… but that sounded extremely difficult to her. I will say that I found it harder to go milk-free than it was to go gluten-free. It’s easier to find acceptable substitutes for gluten than it is for dairy, in my experience. You can make some pretty darn good g.f. bread. And you can always have corn tortillas instead of flour ones. But casein-free cheese? Blech. Nasty stuff. (My boys say it tastes like dog food smells, and since that correlation was made, I can’t bring myself to eat it. We’ve tried numerous brands, and some are less wretched than others, but they’re all bad. And, they’re expensive. So, when you’re paying $6 for a small chunk of inedible “cheese” you quickly just give up cheese altogether.)

Then, after I first made that suggestion to my friend, it appeared that perhaps it was unneccessary after all, and that her son “simply” had bad reflux. After he was placed on medication, he appeared to improve a bit. However, he never completely healed. After a few weeks, though he was spitting up less, over all, he seemed to be getting worse.

Yesterday, this dear mother called me, in tears. She had just returned from taking her son to a g.i. doc. While the experience wasn’t completely satisfactory, he did find a lot of blood in her son’s stools, justifying her concerns, which, initially, he had blown off. The doctor told her that her son likely has an extreme allergy/intolerance of milk, and the only recourse was to stop breastfeeding put him on prescription formula, Alimentum. When she called me, she was so, so torn. She wanted her son to be healthy, of course. But, she didn’t want to stop breastfeeding! “Can’t I try a dairy-free diet, like you suggested, and won’t he get better that way? The doctor didn’t think that would work!” As she was already considering, I urged her to get a second opinion from a different doctor, perhaps one that was more pro-breastfeeding… but I shared that, in my experience, if he did have a severe intolerance and she went dairy-free (which she was still scared to do), it was likely that he would improve within 24 hours. My advice was, if she was unsure about embarking on a dairy-free diet, to go ahead and get the Alimentum, and take a few days to consider her options, to talk with her husband, and to pray about it. In the meantime, to use a pump and simply throw out the milk, just to keep her supply up. That way, if she did decide to go casein-free, she would still have a good milk supply. I told her I’d e-mail her some info on being dairy-free, and asked her to please call or e-mail any time of the day or night.

She e-mailed me this morning, saying, among other things:

Ever since yesterday morning, I haven’t had any dairy. I don’t know if it’s just a coincidence b/c it’s so soon, but he hasn’t acted up AT ALL for his first two feedings! Let’s see if the trend continues t/o the day. I’ll keep you updated!!

Then, another update this afternoon:

Now THREE feedings…in fact, this last feeding, he actually looked up and smiled at me twice while he was eating and was all smiles afterwards! Absolutely no fuss and no tears! Praise God!

This is hardly a long-run kind of test — it’s barely been 24 hours. But, it’s awfully encouraging. Both her e-mails brought me to tears.

Not that I want anyone to have a severe allergy or intolerance, but on the other hand, it’s something that — under most all circumstances — it’s a medical disorder that is entirely controllable by YOU, no expensive medication and no other doctor’s intervention required. So, if anyone is reading this, and their baby is having extreme colic symptoms, or (this is gross) frothy, green diarrhea-like poop, or blood in their stools, please consider going dairy-free! Be encouraged that although it seems very difficult on the outset, it’s VERY rewarding to see your dear baby become healthy, and turn those contented nursing-baby, gummy smiles up to the face of his adoring mommy.

If anyone needs dairy/casein-free info, here’s what I sent to her:

I found a really good page to get you started: http://web.mit.edu/kevles/www/nomilk.html Of special interest is the section labelled “Simple Milk-Free Menus to Get You Started.” To her list of milk-free alternatives, I want to add that you can use Smart Balance margarine (not the half-butter blend, of course), and you can use Butter Crisco. I have called the company, and Butter Crisco is 100% dairy-free, even in its natural flavorings. While not abundantly healthy (though it’s healthier than it used to be; it now has virtually no trans-fats), it is a staple in casein-free kitchens, because it’s very easy to cook with.

Here’s another good “get started” site: http://dairyfreecooking.about.com/od/dairyfreebasics/u/getstarted.htm

Here’s a page that has info specifically on colic, which you’ve probably read and re-read about and it hasn’t helped. Towards the bottom of the page, though, it does suggest that you eliminate milk from your diet and continue to breastfeed, and do not switch to formula. http://www.bflrc.com/newman/breastfeeding/brestfed%20baby%20colic.htm (It’s a lactation-support website, though, so of course they’re going to say, “Don’t switch to formula.”)

Since a lot of people who are casein-free are also gluten-free, you may have better luck finding recipes that are GFCF (gluten-free/casein-free). You may quickly find that people who are extremely sensitive to one food protein are often sensitive to other foods, especially gluten and soy, and sometimes eggs… so, often, info on being dairy-free contains info on removing other allergens, too. And, you may find a lot of info from people who are vehemently anti-milk…

Here are some recipe pages for casein-free cooking, though a lot of them are g.f., too:


About Karen Joy

I'm a partially-homeschooling mother of six -- 3 boys ages 19, 17 and 15 years old, and three girls: 11, 8, and 3. I like birding, reading, writing, organic gardening, singing, playing guitar, hiking, the outdoors, and books. I very casually lead a very large group of homeschooling families in the Phoenix area. I have a dear hubby who designs homes for a local home builder and who is the worship pastor of our church. I live in the desert, which I used to hate, but now appreciate.

Posted on August 6, 2008, in Allergies, Dairy-free, Digestive Woes, Encouragement, Friendships, Medical Stuff, Motherhood. Bookmark the permalink. 6 Comments.

  1. Good luck to Mom and Baby!

    Went my second daughter started having failure to thrive (among so many other things) they never figured out what was wrong and eventually just gave up! It took us five years to figure out it was gluten and dairy! We did the Celiac test, but it was negative, its not usually accurate at that young of an age.

    Hopefully this pair has found their answers!


  2. None of my three tolerated my milk consumption the first three months of breastfeeding. We don’t have any allergies, but something about mom doing dairy really upsets a baby. Hopefully this mother can still bf.

  3. It’s great to hear stories like this. I’m genetically predisposed to lactose intolerance (my mom is LI, and so was her mom), and my siblings have it too. It can be so frustrating to live a lactose-free life in a lactose-full world. Just try eating out and not having a default of some lactose in your meal. I got so fed up, I started a website about it. Now I tell others with LI and milk allergies about my own experiences.

  4. just as an fyi to your friend and all..do NOT replace the milk w/ soy. they have a similar protein structure and can act the same to the body and especially to the brain. i made that mistake… there are oodles of rice and nut milks out there. and other options as you point out. btw…cow milk should be for baby cows..period. (ok i do buy it for hubby…and I miss my soft serve ice cream!! not to mention Ben and Jerry’s!)

  5. You know, wouldn’t a raw fruitarian diet be just as easy or easier? 😉 http://www.foodnsport.com

  6. ***SOY GARDEN!!! Tell her about Soy Garden!!!

    If she isn’t eliminating soy (I did not know the protein was similar to that of dairy!), tell her that Soy Garden behaves just like real butter when used on hot toast. It also works nicely on popcorn.

    We made the mistake of buying Smart Balance Light the other week when the Soy Garden was out. Nothing like plastic on your baked potato! Blech! Earth Balance is also decent, though SG is our personal fave.

    I just HAD to blurt that out. ***

    I am so glad she is having positive feeding times! Anything new since your last update? That poor little baby. 😦 What a relief that things were going better for Mom and Baby!

    I can believe she has seen a difference already. And, as my midwife and doula used to tell me, “It doesn’t take milk to make milk.”

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