Milk/Soy Protein Allergy

Updated on July 26, 2007
K.M. asks from San Mateo, CA
6 answers

Hi Moms, (this is a long one - my apologies)

I have 3-month old twin girls. For the first several weeks of life, they were fussy, wouldn't sleep well and spit up quite a bit. After seeking out a pediatric G.I. specialist at Cook's Children's Hospital, I expected to walk in and get a prescription for reflux medication and be on my way. Instead, what I got was to be put on an EXTREMELY restrictive diet where I cannot eat anything dairy (or anything with Whey or any dairy in it) OR soy... meaning I can't eat out, and I have to read the labels of every single ingredient that I eat. I expected the diet to be temporary, but now the G.I. doctor has recommended that I stay on it for as long as I'm breastfeeding. The alternative is hypoallergenic formula, which would cost us a small fortune to feed twins on. The problem is also that my smaller twin won't take the hypoallergenic formula - she hates the taste of it and it takes me 1 hour just to feed her 3 oz because she cries and screams the entire time. The hypoallergenic formula would also cost us $500 - $600 /month to feed twins on. The other problem is that I'm not 100% convinced that my twins have a protein allergy. Their main symptom (when I've had dairy or soy) is gassiness and it sometimes interrupts their naps and gives my larger twin colic-like symptoms later in the evening time. They also spit up a LITTLE bit more than usual... but not that much!

My question is this: Has anyone else had this happen to them? Were your child's symptoms severe? What were the symptoms? From what I've read, they include diahrrea, vomiting, failure to thrive, dehydration, blood in stools, fussiness, etc. The ONLY one on that list that my twins have is fussiness. Their stools tested negative for blood. The trouble is... this diet DOES seem to be working for everything but the spit-up and sometimes the fussiness. The colic and gas are almost all but gone.

I may sound crazy to be seeking a 2nd opinion since what I'm doing seems to be mostly working, but I'm miserable and JUST NOT CONVINCED that he's right. I know that he's a "specialist", but I'm sort of wanting to seek a 2nd opinion. I don't know of any other doctors in this area that are not in the same practice as my current G.I. specialist. I wish I could contact authors of some of the books that I've read that seem SO much more well-versed on the subject...

I'm just so frustrated. Any insight/advice from someone who has been there would be wonderful.

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E.D.

answers from Dallas on

Defintely stick to what you are doing. Not only babies but most people are allergic to dairy, and soy just isn't that good for you anyway. I work for a doc that does a functional medicine. We do a lot of food allergy testing. We have many women who's babies have this same problem, we do the testing cut those foods out and the problem stops. You have to remember that when your body, even a babies body has symptoms like spitting up it's the bodies way of telling you there is something wrong. Be thankfull you went to a doc that gave you the right diagnosis and suggestion. There are actually docs that will put these babies on reflux medication. That's the last thing babies need, meds to fix the symptom. Always be aware of docs who want to put a bandaid(medication) on the symptom and not find the problem.

L.A.

answers from Dallas on

My friend had a baby with these same symptoms, the Dr. DID prescribe reflux meds, and it made the baby sicker and even more miserable.

She got a second opinion and it turned out the baby also had a dairy/soy allergy. Once she switched the diet, the baby got so much better (too bad it took the Dr almost 10 months to figure it out.)

I know the diet is tough, but get online and you can find some great substitutes and recipes that are actually enjoyable and easy. Also, check out some health food stores like Healthy Approach in Bedford. They have entire sections dedicated to this kind of diet as well as books, classes and support groups that meet for those on wheat/casen free diets.

http://www.healthyapproachmarket.com/retailer/store_templ...

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S.M.

answers from Dallas on

I did not deal with this personally, but a close friend did. They did have to make the switch to the expensive formula, but after a bit of fuss from the dr, their insurance company paid for it. They just had to get a prescription for it first. It may be something to look into. That diet is maddening!
As far as a second opinion, there is obviously no harm in asking. If it doesn't feel right to you, keep asking until a Dr. gives you an answer you are comfortable with. It may just take somebody being able to explain things better. In the end, remember most children grow out of this, and you could be making the switch back to normal as early as 6 months.

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C.J.

answers from Dallas on

I breastfeed my daughter and thought she had an allergy to milk. I had to supplement formula because I had a low milk supply. We started with gassy/formula, then when to Nutramegin(sp?). Have you tasted it? It is awful and my daughter was the same way she hated it. So we went back to our doctor and I requested she be tested for milk allergy it is a simple blood test they can do at Cooks. When the test came back negative the doctor told me she had colic I guess she was about 2 months old at this point. Which was the hardest two months of my life. I hated not being able to help her and she was gassy/fussy and spit up all the time. I knew she probably had colic, but I felt like there was something else wrong. After reading about reflux I brought that up to my doctor. He told me we could do a reflux test which is putting a tube down their mouth. Or we could go ahead and give her Zantac. I decided not to do the test apparently it is a little painful. The Zantac worked great and the fussy/gassy and spit up had really gotten much better. If they have not put your girls on Zantac request it make sure you don't get Reglin it can cause some serious problems. I know how hard this is I was not eating anything with dairy as well for 2 months and it is really hard to stick to that kind of diet. I think doctors do not want to put infants on any medication, but sometimes they just need it anything is worth trying good luck.

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M.B.

answers from Dallas on

Hi K.,

I had a very similar problem, but didn't have the quality medical expert you seem to have, so I had to figure it all out on my own. I would highly recommend you follow his recommendations as you are very likely to benefit healthwise, as you continue to breastfeed your babies, who will definitely benefit from the breastfeeding. We knew my first son was allergic to milk, as he was in ICU. I didn't learn about my own milk allergy until he was two, but fortunately before my second child was born. My first child was just like your daughters and we just suffered through it. My second child was the happiest baby ever. We did later learn that he also had a milk allergy, but since I had no milk in my diet, he did great (he did have problems if I had broccoli or any cruciferous veggie or orange juice). I felt better with these dietary restrictions.

We only later learned that we also all three have celiac disease (gluten intolerance) and I would highly recommend you get screened for that. It is an autoimmune disease with a genetic basis and it can often be the cause of a leaky gut that is what leads to these other food allergies. Gluten (found in wheat, rye, oats and barley) damages the intestine and allows proteins that shouldn't be in the bloodstream to be there, thus you get these immune reactions. Celiac disease is highly underdiagnosed. And, yes, the dietary restrictions are tough, BUT it is well worth it for the health advantages. I've been a highly restrictive diet for almost 4 years and it does get easier over time. There is a restaurant in Plano, Delicious-n-Fit that can cater to your allergies - it's entirely gluten-free and she can accomodate additional allergies (my family also restricts soy and dairy). I also have to restrict egg, yeast and many nuts.

I would be happy to answer any additional questions you have: ____@____.com. I have learned alot on my own over the past 4 years in dealing with these dietary restrictions (I've been off dairy for 12 years) and am very happy to share my experiences. You may also want to visit with a good nutritionist that can help you plan menus etc that will make your life easier. I recommend Faye Elahi at www.specialneedsnutrition.com Sprouts and Whole foods will have many foods that you can eat and fresh fruits, veggies and high quality meats are almost always safe.

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C.C.

answers from Dallas on

I have a 6 month old daughter and we went through the very same thing. At 6 weeks of age she was very fussy with the classic colic symptoms and had projectile vomiting but was still thriving. I also thought (or hoped) that it was just reflux and that medication would help all of our problems. We too, went to a specialist in Plano. We did the special formula for 5 days and because I felt so strongly about breastfeeding, I decided to change my diet and stick with breastfeeding. I cut out dairy, caffeine, and wheat and it was difficult...but well worth it. I ate a lot of spinach salads, carrots, chicken, green beans and pasta with olive oil and vinegar. Not the most well rounded diet, but it seemed to help her symptoms.

I want to tell you that there is a light at the end of the tunnel! The specialist we saw said that babies who have a sensitivity to certain proteins usually out-grow it by 4-6 months. He explained that it has to do with the cells that line their intestines that are "open" at birth to allow easy absorbtion of nutrients and slowly "close" which usually occurs at this age. He did say that it could be ANYTHING in your diet causing the problems....from milk products to veggies. My daughter is now a little over 6 months and I believe that she has completely outgrown this problem. I slowly started introducing the suspected foods back into my diet and now I can eat a normal diet.

I did a lot of reading online which helped tremendously and even contacted the La Leche league. Just remember that you are the mom and you need to do what YOU think is best for your child.

For me, I did the diet change because it was killing me to think that what I was eating was causing her so much discomfort and I really wanted her to get the benefits of breastmilk.
I would say- go and get a 2nd opinion if it helps your sanity. The doctor I saw in Plano was great and very supportive of whatever decision I made.

Good luck with everything and contact me if you need the name of the specialist in Plano.

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