Milk & Soy Protein Intolerance

Guess what I’m drinking?

Black coffee with raw sugar.  I can’t remember the last time I willingly drank black coffee.

But, there’s a reason:  She’s eight months old, and she looks like this:

(taken in April, before her skin was really bad)

(taken in April, before her skin was really bad)

Last night, I was perusing the recent comments that people had left here, and one kind soul mentioned something called Milk & Soy Protein Intolerance.  Info on the web is somewhat scanty about it — more anecdotal than “official” — but what was there fit Fiala to a “T.”  She doesn’t have ALL of the symptoms, which can vary from kid to kid.

But…

  • Blood, water or mucous containing stools – YES.  Watery stools all the time, mucous sometimes, never blood.  I chalked it up to the fact that she’s still almost exclusively breastfed because I’m afraid to feed her anything, since I hadn’t figured out what was irritating her.  However, my husband mentioned, some days ago, that he thought Fiala’s stools were way too watery.  And this morning, she had her first formed stool.
  • weight loss – no, but I had been noticing that she’s not quite as chunky as she has been.
  • chronic congestion – YES.  Fiala is definitely chronically congested, both in her lungs and sinuses, but I chalked that up to lingering RSV symptoms, which the docs told me may happen.  Same with…
  • asthma – YES.  Fiala doesn’t have bad asthma, but we have had to give her 1-2 breathing treatments per week, ever since she had RSV in February.
  • repeated vomiting – No, thank God.
  • gastroesophageal reflux (GER) – No, thank God.
  • eczema and/or skin rashes – Um, YES, definitely.
  • refusing to eat or comfort eating (eating all the time
    to soothe the stomach)
    – Maybe comfort eating.  At eight months, when she should be able to have at least 4 hours between feedings, she still nurses at least every three hours, and she’s back to waking up in 1-2 times in the middle of the night, when she had been sleeping through the night a good 8-10 hours.
  • irritability or colic-like behavior – She’s just such a good-natured, happy baby, but she is definitely crabby in the late afternoon and early evening, which many babies are.  So, I don’t know if that would qualify as a “yes” or not.

When I discover something regarding my kids’ health and I squeal, “This is it!” my husband is usualy much more cautionary, not wanting me to jump to conclusions, or get my hopes up.  But, after he read the list of MSPI symptoms, he really is thinking, “This is it!”

For the last 9 days, I’ve been soy free, but when back on dairy after a few days because it seemed that, if soy was the problem, I could have dairy!  But her eczema flared up again, so I went off of dairy… except for half & half in my coffee.

Upon waking this morning, Fiala’s skin looked the best it has in months.

I did have half & half in my first cup of coffee, but, late this morning, after she’d nursed, her cheeks were back to looking red and very irritated again (though not as bad as two weeks ago or so).  So, feeling like a bad mom because of how difficult this is for me, I had to admit that, likely, she needs me to be totally dairy- and soy-free. ~sigh~

Y’all — if you’re still reading — are likely tired of reading about Fiala’s skin.  But, I must say that I am nearly giddy with hopefulness today, after reading up about MSPI.  The best news is that most babies outgrow it by 18-24 months!

That said, I’m now wondering if Wesley’s eczema, which we’ve never been able to totally eradicate, is tied to soy allergy.  He hardly gets any soy, but maybe it’s just enough to give him eczema.  His eczema is primarily on his calves, oddly enough.

Weirdly enough, though a small intestine biopsy isn’t often done for MSPI (maybe because kids outgrow it so quickly??), when it is done, there are changes to the villi, similar to those with celiac disease (“The degree of villous atrophy may be similar to that found in celiac disease.“)

I think I will cleanse my cupboards of all soy products.  Lots of our favorites have soy oil or soy lecithin in them.  According to what I’ve read, many children with MSPI can tolerate the oil or lecithin, but since Fiala’s first unmistakable reaction was to soybean oil, I’m eliminating those, too.  Tater Tots, Ranch Style Beans, Lay’s Stax, my nearly-new bottle of soy lecithin, Smart Balance…  😦  We’ll miss you, old friends.  But, it’s worth it.  I can’t wait to post pictures of my newly-healthy baby in another week or two.  😀

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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 July 1, 2009, in Allergies, Babies, Celiac Disease, Dairy-free, Digestive Woes, GFCF, Medical Stuff, Parenting, Science, The Dear Hubby, The Kids. Bookmark the permalink. 23 Comments.

  1. WOW! I could cry for you! I remember when Zach finally had soft baby skin. My dh and I both wept! Praise the Lord…and imagine how much more comfortable she is feeling!

  2. Oh I hope it works!!!

  3. Let me know if you need help thinking of substitutes. Whole Foods has a soy free tater tot! Michigan’s Better Made brand potato chips are soy free (we are sunflower free, too, which complicates matters for us).

    The baby’s skin looks beautiful today — I know you’re so glad to have figured that out and creamless coffee is worth it for you! 😉

    • Oh, I wish that was her skin today!! That shot was taken in April. I reviewed a bunch of her older pictures to give me motivation to get her back to healthy skin. 🙂

      Thanks for the tip about the Tater Tots at Whole Foods!

  4. Well… You won’t be breastfeeding forever… You can always get your old favourites back once you’re done! I hope this is going to fix it.

  5. And by the way, she is such a cutie!

  6. Have you made vanilla or chocolate cook and serve pudding w/ coconut milk yet? YUM!

    I use palm shortening in icing — I use the Wilton basic “buttercream” recipe (no butter in it, tho). Keep a bowlful in the refrigerator — it’s good when you need a sweet fix.

  7. embracingthechaos

    Yay! While I was breastfeeding #3 I had to eliminate dairy 100%. I tried everything in my coffee. There is nothing like dairy in coffee. I almost bought something called mimicreme. But you could only order it by the case and it was RIDICULOUS expensive. So I learned to enjoy my coffee black. The only other option was to stop drinking it, and that was just not acceptable to me. 😉 I had to change coffee brands. I had been loving a coffee that I bring back with me from Canada (Tim Hortons) but without cream, not so great. I swtiched to Dunkin Donuts coffee and it made all the difference in the world for me. Then when I started to have dairy again I started with half and half in my coffee again and it tasted kinda weird. I couldn’t say I prefered it. Of course I kept at it and once again I can’t drink it black.

    Anyway, congrats on figuring it out. She is lucky to have you as a mom. I personally know too many moms who would have just been searching for a magic pill.

  8. It sounds as though you are making progress! Good job with the investigating 🙂 When our son was a baby (he is four now) I went through the same issue with breastfeeding and elimination of foods due to Eczema. Unfortunately for him (and us) it continued getting worse for the first three yrs of his life. No matter what we eliminated, he flared up. We went to allergists, had him tested, had him on meds, creams etc and nothing worked to help him. It was awful and I just felt so sorry for him, and so tired as he and I never slept due to itching. Anyway- I must share with you that after trying all kinds of treatments, we knew we just had to find something for him that was safer than all these meds and WORKED. We started him on Vidazorb kids chewable probiotics and they have been an answer to our prayers! He began looking and feeling better and can now eat all kinds of food! It is awesome and he loves to chew them! So just keep in mind, if your little one continues to break out, that probiotics are really being shown to help with skin conditions and Vidazorb is a good one! Caroline

    • I’m so glad you found something that worked for your dear son. But… ACK!! $43+/month for ONE child’s supplements? There’s no way I could afford that.

  9. She is such a beautiful baby. Someday I would love for our little babies to meet. I am still holding out hope that I will be in NM in the fall and somehow we can meet.

    I will be praying for you. I can imagine how difficult this must be. I think that I mentioned that my now 7 yo was allergic to dairy and soy for quite awhile. She horrible stomach issues and weighed 17 pounds until she was 2. But I wan’t breastfeeding anymore with her, when the problems started, so I only had to monitor her food. But she did grow out of it.

    May this baby be covered with the Lord’s protection and let her heal without any more problems.

  10. glutenfree4goofs

    I know you hate this for Fialas sake but you are a blessing and inspiration to others of us dealing with food allergies! Thank you.
    Jessie

  11. Karen, check out the QuickTopic MSPI board. I have lived off of that since we found out about Abigail’s issues. We moms seem to know more about it than our docs. Sorry that I never got back to you about the rotation…Abby’s getting over a nasty viral infection and my grandfather passed away, too, but hopefully just milk and soy free will help. If you need more rotation info, I’ll send it to you. I’m so glad she is getting better!!

  12. BTW, earth balance makes a pretty decent soy-free spread…and maybe after a few months, she will tolerate soy oil & lecithin. Beware though, this week I was using Fever-All suppositories, made with hydrogenated ‘vegetable oil’ (which is almost always soy oil) and her bottom got all nasty…I had to have a pharmacist make us up some out of coconut oil.

  13. glutenfree4goofs

    Karen, I hope this isn’t a dumb question but I think your struggle has led me to the conclusion that Judah (Bubba) has a soy allergy as well. I was giving him mocah mix (with water) on his cereal and each morning he would get a rash on his face. I though it was the cereal because of tree nuts (it still may be also) but I’m wondering about sodium caseinate- some labels say “not a sorce of lacotose” but it IS casein I’m assuming (caseinate) so is that a no? Duh, I should know this but the casein/milk protein stuff is new to me.

    • It appears that the jury is still out on sodium caseinate. It is dairy-derived, but according to some sources, it is so chemically altered that it has none of the effects of casein (or lactose). I don’t know. Wesley, who is highly allergic to dairy (gives him a near-anaphylaxic asthma response) did not ever react to Mocha Mix. You can read more here: http://www.vegparadise.com/news24.html, or just Google it for more extensive info.

      • glutenfree4goofs

        Thank you! I do think the Mocha Mix (spelled wrong previously, oops) is causing a reaction because of soy, but I’m going to try to read up on casein.

  14. Karen,
    I just wanted to note that Soy Lecithin is most likely OK to have. I work at a natural foods company and have been involved in researching the allergens in our products. My supervisor found a report issued by a reputable lab that stated Soy Lecithin is so highly processed that the chances of an allergic reaction to it are slim to none. I didn’t read the report, so I can’t give you more detail, but Soy Lecithin is in all sorts of products that you wouldn’t expect so not having to avoid it would be nice… Of course if my baby girl was having such awful reactions to soy I probably wouldn’t trust anything and totally take anything that even smelled of soy out of my diet. And then there’s also the question of what exactly is soy lecithin if it’s that far away from soy?

    • Yeah, it seems like the standard wisdom for MSPI is to eliminate all soy oil (and butterfat/ghee) and lecithin, then add it in and see if it causes a problem. She’s still not improved enough for me to feel safe yet, adding it in, especially when her first definite reaction was to topical soybean oil.

      And… similar things are said about peanut oil, but my anaphylaxic son still has serious reactions to the supposedly allergy-free peanut-oil-fried waffle fries at Chick Fil A.

      So, I’m leery of products that are technically or supposedly safe, if I know that the parent product carries a risk for us.

      I do look forward to having my soy-lecithin back, though!!!

  15. My daughter had a milk & soy protein intolerance and I was only able to breastfeed her for five months because I lost so much weight and dried up. My son is five weeks old and I have taken milk out of my diet completely for three weeks but only recently took soy out completely. I was hoping that he would be able to tolerate it, but after a number of recent bloody diapers I am taking it all out. Does anyone know how long it takes the soy protein to get out of your body and your babies? I’ve heard for milk it can take up to two weeks to be free in your body and then an additional two weeks for your baby to be free. Is soy the same?

    • Margo, I’ve heard that it takes 4 days for soy protein to be out of your system (and breastmilk). However, I don’t know if that’s true. Bloody stools are REALLY serious. If that doesn’t clear up within a week or so, and you have the means to do so, I would hie thee hence to an allergist or immunologist and start looking for protein-based enteropathies, like celiac disease, or MFPIES, or other intolerance. 😦 I’m very sorry for both you and your dear son.

  16. I am just going through this. From what I learned, it sounds like your baby reverting to waking up in the night is an indication she may be ready for more “solids”. I was told they can only handle so much in terms of liquid ( breastmilk) that they’ll still be hungry and start waking in the night again.

    Also unfortunately, if your baby is intolerant of dairy, as my doctor put it, that means I can’t eat a salad dressing if parmigian is the “100th ingredient”. An example used to make sure I knew if I had any trace amount, sadly that hurts them.

    I have been dairy free over two months. (Longest time I have ever been chocolate free. Precious duration was probably a week and only unintentionally that long!)

    Just learned I need to go soy free because I’m still seeing mucousy poops and only because I inspect every poop thoroughly, I noticed a speck if red three separate times. I really hope continuing to breastfeed is the right decision. I’m nervous what it might mean if I make a mistake. I hope no long term effects exist from my baby having issues. He’s now four months. Did you learn anything about that?

    • Colleen, my baby — in this post — is now five years old. She still has some problems with some foods, but the allergy is minor. It turned out that she had a systemic, septic Staph infection, which we didn’t discover until she was three years old. She was on oral Nystatin for seven months, and topical Nystatin even now, for flare-ups. She has never been 100% better, but she is about 99% better. We still have to be extremely careful about her sugar intake, because, for some reason, she is still susceptible to infection. But, she is doing SO MUCH better than I ever thought possible that I thank God, and I still feel great relief over the state of her health.

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