I have been off dairy (obvious dairy and also checking labels) for a month, but she still seems to get diarrhea and spit up a lot and is only gaining 12-15 grams when she does gain and loses ~30 grams every few days. She is on just Elecare (similar to Neocate but elecare is from the company that makes Similac and Neocate is from another manufacturere). My LO was born at 33w5d is 39w2d now, practically term.
How long were your kids on Neocate? Was it Neocate for a whole year or did you switch to an Alimentum/ Nutrimigen or regular formula at some point?
Re: Elecare/ Neocate experience
Have you considered removing soy from your diet as well? Half of all babies who have trouble digesting milk proteins also have trouble with soy because their proteins are very similar. I had to eliminate both with my son. And be sure to read every label carefully because dairy and/or soy can hide in things you wouldn't even expect like vitamins and spices! Crazy!
So are you still BFing while on your elimination diet? Or just using Elecare? You could also try switching to a different elemental formula, sometimes babies will do better on one vs the other... and Neocate is the only one that does not contain soy oil:
https://www.neocate.com/images/uploads/Files/Consumer Letter New NIF_Jul2013.pdf
Hope that information helps! Good luck... let me know if you need recipe ideas for your diet. I was dairy, soy, egg free for nearly two years!!
I am on a multiple allergen elimination diet (dairy, soy, eggs, gluten, nuts, citrus), but won't be BFing for 4 weeks, until we see the GI specialist again. I am pumping till then. I pretty much need the GI doc's go ahead before we begin to nurse again and he might do a pre and post white blood cell count to see if which if any proteins cause her allergic reaction.
Hopefully it is just an immature gut thing that she can out grow. I had been reading the labels with dairy looking for caesin and whey and allergen warnings, but she still had really bad bloody stools and spitting up every time (it doesn't help that she has reflux) plus elevated white blood cells. But since I wasn't eating much soy mostly almond milk and lots of nuts and eggs to replace the dairy I think it might actually be eggs, but we will have to see. The hardest thing to find is gluten free bread without eggs or soy or dairy. I finally found one that costs $6 for a 24oz loaf!!! If you have any insight on that I would be glad to hear it.
Now that she is on Elacare most of her symptons are gone. I am just hating to pump this milk to just donate it because the protein hasn't left my system yet (I know it sounds petty, but I begrudge the babies who get the milk my daughter can't have). And I am scared that after a month on the bottle she isn't gonna want to go back to nursing, but I will cross that hurdle when I get there.