Milk/Soy Protein Intolerance - MSPI - READ HERE!!!

[Cassie]

well I am pretty sure the Palmer is either milk or/and soy protein intolerant.  It seems like everytime I have dairy I also have soy.  I need to do better about following the diet so I can see for sure.  However he doesn't have blood in his stools that I know of.  We have check them once and it was negative.. do you think we should check again?  I don't see blood, but I know that it isn't always visable.  Did your lo show occult blood the first time they checked?  His symptoms are that he gets a diaper rash and starts nursing poorly.  He pulls off, is frantic and cries.  Once I watch my diet for a week or so he gets better with nursing and the rash goes away.  He gets a little more crabby during the day, but still sleep fairly well at night at least.

My problem is that he also reacts to garlic, brocolli, spicy foods, tomato products, citrus fruits... I can't eat anything.  The upside is I am almost back to my pre pregnancy weight.  But really I don't know how long I can keep up not eating anything!  I am tired and crabby.  I guess I don't really have a choice as I tried Elecare formula (like Neocate) and he refused to drink it plus I am not willing to shell down $500 plus dollars a month for formula.
 

[GraceKellysmom]

Cassie, you may find as he gets a little older he is less sensitive to some of the other things. (garlic, other vegetables) My S-MIL is allergic to citrus, including raw tomatoes. She is ok with tomatoes if they are cooked (spaghetti, chili soup) though.

Do you think the pulling off could have anything to do with him not liking the way your milk tastes after eating certain things? Although I think the flavor variation would be so small, so maybe not?

You may find that as the Prevacid continues to heal his tummy, the burn with eating will go away and he will nurse better. The longer you nurse him and are dairy/soy free, the better his tummy/gut will heal too. Even if you aren't getting blood (yet) in the stools doesn't mean he isn't MSPI. It takes time and exposure to get the blood, but some moms on the mspi board report no blood ever.

Yay for losing the weight, doesn't it feel wonderful?

And yep on the expensive formula, I am almost glad it is so expensive because it is a deterrent for a mom who will/can nurse. This time will fly!

I lived on salads, sandwiches and dairy/soy free soups for lunches, and got creative for cooking dinners. It is harder and harder to be soy free because of the high protein diet craze, soy protein is added to sooooooo many processed foods.

[kim&savannah]

Cassie~

I just wanted to mention that dd was one of the ones who never had blood in her stools (at least, not that we saw and we never had her tested), but she definately had a reaction every single time I ate dairy or soy (rash on her chin, runny nose, dark circles under her eyes, etc. . .).  So if you are seeing a reaction, I don't think it matters whether you test for blood--you know it affects him.

Good luck with finding stuff to eat!  I know it can be hard.  I ate a lot of peanut butter (definately did not help me lose the preg. weight , made my own bread (I have a great recipe if you are interested!), enjoyed whatever treats I was allowed (poptarts, semi-sweet choocolate--often with peanut butter rolled in a tortilla--yum!!!).  And I decided that I wasn't going to be hard on myself about eating too much of anything since there was so much I couldn't have.

~Kim

[Cassie]

How could you have chocolate?  The semi sweet I have has milkfat listed as an ingredient. 

I still don't know if he even tolerates soy lech. 

I swear the kid reacts to everything I eat.  I can't even take a milk/soy free vitamin.  I am seriously afraid that my milk is going to dry up due to my lack of nutrition.

I think this is just God's way of reminding me that I am not to have any more babies.

[kim&savannah]

Some semi-sweet chocolate chips are ok--I think the ones from Ghiradelli (I always spell that wrong--sorry are ok, and I know the ones at Trader Joes are ok (I dont know where you live--if you have Trader Joes?)

You can still eat meat and chicken right?  And tortillas--lots of non-spicy mexican food?  Or casseroles?  I know it gets hard because you pretty much have to make everything from scratch in order to avoid soy and dairy.  I eventually got kind of used to it and actually still cook that way a lot.  I feel like its healthier than all the prepackaged stuff, although those are so much more convienent.

~Kim

[Cassie]

Yes we have 3 Trader Joes.. I will check it out.   Thanks for the tip!

Avoiding milk/soy isn't actually hard for me at home.. it is all of the other stuff that is getting me down.  Half the time I don't even know what it is he is reacting to.  Plus my husband works alot and he likes to go out to eat... it is kind of his way of relaxing.  Obviously I can't really go out so this is really disrupting our family life.  I know that seems like a small thing, but it is really getting me down.

Today I am feeling really guilty because I ate some salad with a few spects of cheese on it on Friday (I was at a playdate and the salad I brought accidentally got mixed in with the other so it was either that or not eat anything) ... today Palmer has a diaper rash so bad it is bleeding and he hasn't slept all day.  He is a totally different baby than he was yesterday and it is all my fault.

I hope he starts to be able to tolerate a few more foods soon.

[kim&savannah]

Going out to eat was difficult, but I managed to find some places I could go--Mexican food was often a good thing--I could ask for no cheese or sour cream and most of the other was ok.  Or getting salads, although I had to watch carefully what was on it--meats and potato type meals too, although you can't usually do mashed potatoes.  And I guess the no garlic thing would make a lot of stuff tricky.  We really don't eat out all that much, so that wasn't quite such a problem for me.

I'm so sorry that Palmer is so sensitive--that is rough.  I had a hard time convincing some people that it really was an issue--they would try to make stuff that they thought was ok, but for example, my MIL would give me things that "only have a tiny bit of dairy"--if it was at the end of the ingredient list on the package, she couldn't imagine that it would matter.  And then Savannah would have a rash the next day--amazing how little it took for her to react.

~Kim

[grahamsmama]

I was so depressed when I had these issues with dd.  Just hang in there!  She started improving a lot around 6-7 months.  We started giving her soy around 10 months and by a year she could do yogurt and cheese (still no whole milk, I think because of the lactose).  So, things go a lot, lot better! 
I ate a lot of sweet potatoes, cheerios with rice milk,  and  rice cakes with peanut butter.  Look in the kosher section at your supermarket.  There were all kinds of good things there that I could eat.  Graham crackers were ok. The rotisserie chickens at Whole Foods were ok (although expensive), but not the ones at the regular grocery store.  Plus they had these awesome vegan chocolate chip cookies that were milk and soy free.  I ate so many of those!!! Elizabeth was ok if I ate nuts, so a lot of my protein came from walnuts and almonds.

[GraceKellysmom]

Dark chocolate is a good option too. Newman's Own makes dark chocolate bars and orange dark chocolate bars that are so yummy! Rice Dream "ice cream" is good with a little Hershey's syrup and a banana mixed in.  I ate a ton of Rice Dream when nursing Max. 

KWYM about the eating out thing. It does change your life. In one way, I'm glad for us because we got more frugal as far as not eating out so often. (lost more weight) I also found my places that I could eat out, things that were safe.

[Cassie]

Thanks ladies.  I had a bad weekend and started feeling sorry for myself.  I know I should be happy and thankful that Palmer is a healthy little guy.

Thanks for reminding me that it gets better.. I just have to be patient.

[grahamsmama]

Another idea: Fry up some tortillas with olive oil, smush up some avocado (I put Lawry's seasoning salt).  It's a yummy lunch.

[kim&savannah]

Yum!  I love avocado!  That sounds like a good lunch even without diet restrictions

~Kim

[Cassie]

I LOVE avocado!  I eat one daily!!!  Maybe that is why I have quit losing weight. LOL.

[hayleysmum]

Hi all - I'm a newcomer to the BW site but have been dealing with MFPI (aka multiple food protein intolerance) since my dd was 3 wks old.  She was exclusively bf from birth but started vomitting daily (was told this was normal) and then developed ezcema on her face and scalp (i assumed normal as well).  At 3 wks, I found blood in her stool and took her to A&E - was told by attending ped that this too was "normal" - yeah right!  He sent us home and told us to come back if we found more than a teaspoon of blood in her nappy.  As she was putting on weight and otherwise appeared healthy he told us to come back in a week for follow-up.  We did, and eventhough there was still blood in her stool, he sent us away with the same warning to return only if there was a significant amt of blood.  That same night, there was (in my panicky new mummy state) significantly more blood so at 2am we drove back down to A&E.  Fortunately, a different ped was on call and she told us that she could be suffering from allergic colitis.  This came as quite a suprise as neither of us have any allergies to speak of...  The next day I began a dairy/soy free diet.  Amazingly the vomiting stopped within 2 days and she hasn't vomited since.  The ezcema took about 10 days to start clearing.  Unfortunately the blood was still present so after two weeks, on the advice of the dietician I've been working with, I started excluding wheat and egg as well.  Needless to say, I've been shedding those pregnancy pounds a lot faster than I'd anticipated!  I've perservered with the diet (she's now 12 weeks) but as the flecks of blood continued to appear, the GI recommended Neocate rather than me eliminating any additional foods.  The dietician suggested that I do a top-up to ease myself into the switch.  Lo and behold, on two bottles of Neocate a day she is now blood free.  I don't know how much longer I will continue to bf as I'm craving cheese amongst other things but overall, I haven't found it that hard.  As some of you have stated, the biggest challenge is going out to eat and I've pretty much had to give that up as it's too risky/ pain in the arse to do. 

When I first started her on Neocate she refused point blank to take it.  I knew it was the formula rather than the bottle as I'd been giving her expressed milk in a bottle several times a week from near birth without any issue.  I did as Tracy suggested and gave her nothing but bottle - it took us 36 hours before we could safely go back and forth between bottle and breast.  Things have been fine for the past four weeks but on Monday she started screaming through her dinner feed and has repeated it last night and again tonight.  As a result she goes to bed hungry and then keeps waking up.   Last night I caved in and bf only because I was home alone and warn out from the crying.  I'm wondering if I'll have to do another bout of nothing but bottle...

Anyhow, just introducing myself and glad to know that there are others in the same boat.

[1sttime]

Hi everyone, I've been doing the mspi diet for about a month now. I tried adding back a few things and always had a huge reaction. We're not big meat eaters so I've been really paranoid that I'm not getting enough protein. Have any of you had problems with that? I've lost all my pregnancy weight then some, which is great but I'm afraid I'm going to lose too much and not have good nutrition for breastfeeding. I guess I just need to eat more peanut butter and stuff like that even though I get sick of it after a while. I've heard yogurt is the first food they can start to tolerate again, then hard cheese. Anyone have any idea why that is? I also wondered when they typically do ok with soy? He seems to be really sensative to that. Thanks for all the advice