Anyone try the total elimination diet for allergies?

SpartanGirl · April 2009

A little history - both of my children had/have food allergies. DD was diagnosed with milk, soy and egg allergies. I was still able to nurse her until 15 months by eliminating those things from my diet. DS was diagnosed with a severe milk protein intolerance. He was MISERABLE while nursing, even after I cut out all milk and soy (including hiddnen sources). Out of desperation at 6 months, we switched him to Neocate formula. He has done amazingly well with it. I suspect that there were other allergies were not identified or haven't been identified yet.

Now that we are expecting #3, I would like to nurse again but I am terrified of another situation like DS's. It was honestly hours upon hours of nonstop crying. Just awful. I'm thinking that trying the total elimination diet may help if I try it from the start. I'd love any information or experiences anyone may have on it. I want to be prepared so we have a good chance for success this time around.

Thanks in advance!

meljp430 · April 2009

i have a 3 month old who was suspected of having the milk protein allergy about 3 weeks ago after some bloody diapers (not streaks, his diaper looked like the gross paper you find underneath chicken or beef--you know red). he was not excessively fussy but has always been gassy. we did nutramigen for a week and his stools changed but still tested positive for blood and in the meantime i began eliminating dairy/soy. after a week we began BF again and friday will be 2 weeks and i am frustrated because i don't see any real improvement. we are giving it a few more days and then i think we will be switching to formula. i am struggling with this. was it difficult for you?

i recently took out wheat because i thought maybe that was effecting him also. problem is that rather than having blowouts several times a day before, he is only going 1 time a day so i have to wait in suspence to see what the next poop looks like!

it sounds like you are more prepared for this than most people because of your experience and what research i have found says that it doesn;t always happen with other children and that BF can work out fine. maybe you will be lucky! i have heard that you can start eliminating foods in the 3rd tri to get things cleared out before baby. maybe try that.

did you try other formulas before switching to neocate? did your son ave other symptoms? is he still allergic or has he outgrown it?

SpartanGirl · April 2009

The elimination was really hard for me at first. Thankfully, I met another mom who was eliminating the same foods, but she was further on than me. She gave me a lot of tips and recipes. We became frequent shoppers at our health foods store. We learned all about subsititution. That was so important to me. I could have "normal" foods, just made with allergy free substitutes. We used Hemp Milk instead of Rice milk. I hated the taste of rice milk, but hemp milk was tolerable. We found lots of great cheeses made from sheep's milk or goat's milk. There is also a really great rice whipped topping that tastes even better than whipped cream. Chocolate pudding (contains no milk in the powder) made with hemp milk and topped with the rice topping is a GREAT treat! I found that once I had a pantry stocked with "safe" options it was much easier for me.

We started with Alimentum and Nutramigen. They worked pretty well, and we used them b/c our ped gave us free samples while we waited for insurance to kick in for the Neocate (we have an awesome insurance plan that covers it 100%). Neocate has definitely worked the best for DS. He seems to have outgrown the milk intolerance. DD, while she can eat most dairy and soy, has to be monitored. Too much leads right back to bloody diapers.

It's strange to me too that DS's allergy seems to be outgrown and his was much, much worse than DD's, and she still struggles. I wonder if part of that may be because I didn't do a good enough job of eliminating it from my diet when I nursed her. I guess I'll never know for sure.

DS's symptoms were severe colic (he had bouts of crying 5 or 6 hours without end) and never slept, constipation, and reflux. DD had bloody diapers and diaper rashes and reflux so severe she lost weight.

We had hoped that DS wouldn't have allergies, but now we're just planning on this baby also having allergies and maybe we'll be pleasantly surprised! I do hope to start the elimination diet in the last week or two of pregnancy. I really hope it helps us.

I hope you can find exactly what is causing your little one's issues. I know how hard it can be to pinpoint. If you have any questions, let me know. Just remember that the elimination DOES get easier once you have the hang of it. Good luck!!

meljp430 · April 2009

thanks for your reply. it is helpful to hear other's stories. i hope that you get lucky with your next baby but if not it sounds like you will be fine and totally prepared. thanks for the food ideas! i never thought about chocolate pudding but that is just what i need to keep me going!

just curious, though when your son was on the nutramigen what was it that clued you in that it wasn't working?? was it just that he was still fussy? i hope to be able to pinpoint the exact cause because i want to know why this is happening. it keeps me up at night wondering what it is and if i am hurting him. hopefully a miracle in the next couple of days!

SpartanGirl · April 2009

You know, the Nutramigen (and the Alimentum) was SUCH an improvement, that had we never tried the Neocate we would have still called it a success. It wasn't until the Neocate though that he started sleeping and smiling. That's when we knew that things were better. He was much less fussy on the Nutramigen, but he didn't become our smiley guy until the Neocate. We honestly only switched to the Neocate b/c it's what our peds GI recommended and our insurance covered it. If not, we probably would have just labeled him a fussy baby, but much improved over how he was.

It certainly couldn't hurt to try the Neocate and see if it works better. Maybe you could benefit from the TED too. Then slowly reintroduce the allergens to find out what it could be. It's such a guessing game, isn't it?

sarahgcapecod · April 2009

No, but I would have eventually had to do that diet had I continued to breastfeed. My DS#2 was miserable from birth until 6 months old when he was diagnosed with allergies to dairy and eggs (along with dust mites, etc). I tried to cut out those two items but he only got a bit better, so I put him on soy formula and he was a new baby. Since then his skin is still bad but his personality (and sleeping ability) is 100 percent better. As I have started foods, I have found out that he is also allergice to bananas and most likely peas. I seriously never would have figued out what to live on for diet unless I did the TED.

Good luck to you with #3. My DS#1 has a milk protein intolorance, this DS is allergic to lots of things.....so I'm actually expecting worse with #3 :-(.

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