Allergies to Milk and Everything Else

Updated on February 10, 2008
K.B. asks from Rocky River, OH
20 answers

I was just wondering if anyone else had thier child diagnosed with allergies to milk and casein before. She is 6 months old and was exclusively breastfed until 6 months. At that point we tried to introduce formula for the days that I have to go back to work. She broke out into hives and they are saying that she may have worse reactions as she gets them. Turns out she is allergic to eggs, milke, milk casein, and rice. What I did not know was that milk is in EVERYTHING! We have to use something called Neocate that is 50$ for a small can. I also have to cut all these products out of my diet as well. I am so nervous as to how to handle this. Is there anything we can eat?? What about when she gets older? How do I choose snaks? Anyone that has been through this I can use any advice you have. Thanks

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So What Happened?

Unfortunately, goats milk, nutramagin and allimentum all have casein in them so none of them are an option:( She has a mild allergy to soy and is definately allergic to rice and eggs, so much of my options are limited, but it is nice to hear that I am not the only one that has been through something like this and it sounds like I will adjust to it. Thanks so much for all of the advice. I am defintely going to look into the cook books and I have already visited some of the websites!! Any more info you all come up with let me know. I really appreciate it!!!

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K.S.

answers from Cleveland on

Hi K.,
My son is 2 1/2 he is on a GFCF (Gluten Free/Casein Free diet) It is HARD at first but it gets easier. We didn't start this until 4 months ago though, so I know with a 6 month old it would be quite different as far as the nutrition that she needs. If I come across anything that may be helpful I will let you know. There is Almond Milk (by Blue Diamond) that is pretty good you can get Vanilla flavored, Chocolate or Original - that would be a supplement you could use for milk if you decided to keep breastfeeding. There is also Rice Milk that doesn't have Casein (but you have to read the labels carefully) and Soy if she can tolerate that. There are plenty of foods available now for kids with allergies (the downside is that cost quite a bit) since you are catching it so young, she will never get used to the regular stuff, so shouldn't miss it. BUT sometimes they outgrow these allergies... so maybe she will be one of the lucky ones.

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K.O.

answers from Toledo on

Hi K., My three year old son has allergies to many foods as well (milk, eggs, soy, peanut, and wheat). We found out when he was a baby because of awful ecxema, occasional hives, and throwing up.

Have you seen an allergist yet?? They can help you out with different recipes and ways to get around the foods. I have found is that he is able to have some foods with trace amounts of the products and not have a reaction. I know that is seems risky, but through trial and error we have found that he can still eat a lot of what he is "allergic" to!! We don't know if it means he is growing out of it...but we are hopeful.

I could write a ton on this subject because we have been dealing with it for over three years, but now it is just normal to us as a family. We have different recipes for him and he now understands what makes him sick.

I am not completely familiar with casein. Is it in soy?? I reccomend soy milk and it can be substituted for milk in just about any recipe. The hardest thing for us to avoid is cheese and butter. It is EVERYWHERE...especially kid-friendly foods.

I empathize with you and hope my thoughts have helped.

K.

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J.H.

answers from Columbus on

Find a holistic doctor, (he or she would also be an MD) and get advice from them. Also, go to Whole Foods or a local health food store. This is not an uncommon problem, and there are resources and solutions that are not out of reach or too hard! Whole Foods typically has staff who are very knowledgable and helpful. We have a Dr. who is also holistic, and she has given us a wealth of information on other issues (we do not have the dairy allergy problem). I would highly reccommend finding a Dr. who will have lots of info on this problem and be able to give you the answers you need.

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A.N.

answers from Cleveland on

Hi K.,

I feel your pain. Milk is, indeed, in EVERYTHING. My daughter had a milk protein allergy as an infant, and I gave up anything with milk protein in it so I could continue breastfeeding. Obviously, your daughter's case is more severe with the additional food allergies, but my daughter did grow out of her milk allergy at around eight months. She now eats anything with no problems. Maybe your daughter's allergies will improve as she gets older.

I would advise you to check out the La Leche League website. There is a forum there where you can post questions for other moms. I found lots of information on there when I was going through this regarding foods and recipes for children with allergies. Good luck!

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L.B.

answers from Charlotte on

Well, we are all strict vegans here. I would never give my daughter any sort of dairy. It's loaded with antibiotics, hormones, and consists mostly of puss! It is a horribly cruel buisness that I will not have any part in. You can check out pysicians committee for responsible medicine (pcrm.org). They will give you a long list of all the childhood diseases linked to milk.

Dr. Spock has actually appologized for telling parents to give thier children the milk of other species. He recants his former position and states that there is no place in the diet of a human infant for cow's milk.

Fruits, vegitables, grains, and legums are the four food groups for a healthy life. You can make just about anything your used to eating by just tweaking the recipe a little bit. Just look into vegan recipes. You and your family will be much happier and healthier for the effort!

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M.C.

answers from Cincinnati on

My 2 year old is allergic to Milk, Casein, Egg White, Egg Yolk, Wheat, Peanut, Soy, Banana, Coconut, Rice, Rye, Beef, all tree nuts, and lettuce. His problems began almost immediately. Colicky baby, vomiting, severe eczema, you name it.

I would assume that if you want to breastfeed him you would have to cut all of the allergic foods out of your diet. Did I read somewhere he's allergic to soy too? Something to keep in mind, your child is allergic to the PROTEIN in these foods. So, typically, if someone is allergic to soy, they can still have food prepared with soybean oil because the protein is broken down. My son is allergic to coconut, but obviously can drink Neocate even though it has coconut oil in it. Does that make sense? I hate to see people limit themselves more than they have to, especially when you are dealing with this many allergies.

Have you met with a pediatric dietitian in addition to the allergist? He/she will help you sort this out and verify what I've told you. The pediatric allergist and pediatric gastroenterologist I have met with all had a pediatric dietitian to meet with. She was invaluable.

In regards to NEOCATE, here is a form letter Dr's typically fill out and send to the insurance company. It's called a letter of medical necessity http://www.neocate.com/aaa_neocate/686-neocate-infant-req... . Be prepared to fight your insurance company to get them to pay. Perhaps you'll luck out, but people wouldn't be working so hard to get legislation passed to make insurance companies pay for Neocate and Elecare if ins companies typically paid for them. Neocate (and the US brand Elecare) are so broken down, they can be tube fed. The stuff tastes so bad, I don't think they ever intended for it to be tolerated orally. Insurance companies use this loophole to not pay for it. They say they will only pay for it if it is tube fed. I hounded my insurance company for months and finally refused to get off the phone one day until I got to speak to a manager. He worked with me to get it paid for. We were also reimbursed :). As an infant, it was running us $500/month, as a toddler it would have been around $350. My friend just got hers paid for by getting a lawyer involved.

I've known about my son's milk and soy allergy since he was couple months old, so I know what you're going through. It's so difficult to see them suffer.

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S.B.

answers from Cleveland on

I can't help you with the allergies but I just wanted to throw this out there. When we had problems with our 3rd son we were searching around for formula and tried to get him on Neocate...unfortunatly we found he had other problems but our friends son was on Neocate and if I am correct, because it is a prescribed formula, like medications, his insurance paid for it. I just thought that if you hadn't tried that just look into your insurance and see if they will cover the cost.

Good Luck with your daughter!

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H.S.

answers from Cleveland on

Read and research is the answer to your diet. My daughter was diagnosed at 2wks old with a dairy allergy. If your daughter is allergic to the milk protien casein, then chances are great that she is allergic to ALL dairy, which include goat's milk and milk from other animals. I too breastfed and had to limit my diet. Dairy is in everything! Vitamins, birth control, medications, you name it! The website www.foodallergy.org gives you a list of ingredients to aviod when reading labels. It is hard at first, but you grow accustomed to reading labels. Be aware that you will spend a great deal more time at the grocery store. Also, even when you find products you can eat, ALWAYS check the label the next time you buy it. Manufactures change product ingredients all the time without consumer notification. I was told that she would out grow it by 15 mos, but now she has an EpiPen and is also allergic to peanuts/nuts. Her allergist informed me that once I learned she had an allergy to milk I should have cut out all other allergins from my diet while I was breastfeeding. She was sensitized to peanuts and nuts through my breastmilk because I ate them. I have hope that she will out grow all of this by age 4; we are 3 mos from age 2. The website that I mentioned above also has an alert page that tells you when food products on the market have been changed. It sounds your daughter will be eating alot of whole foods and foods that you have to prepare yourself. FYI: Fleischmanns light in the tub and Fleischmanns unsalted margarine are both dairy free and can be substituted for butter. Good luck! It is hard at first, but it is managable.

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I.P.

answers from Columbus on

Hi i just found out friday that my 2 year old son is allergic to milk,eggs,wheat,peanut and dog!Great! So i went to the heath food store with my 2 page list of things to avoid and two hours later spent $75 dollars on like 20 items!I found the milk allergy easier to deal with than the wheat seems like almost everything has wheat in it.I ended up getting dairy-free butter,yogurt and cheese!Since she is so young she might grow out of them what i would do is make your own baby food since most of the jarred kind have milk or egg in them.Also did you try to apply for wic if you get approved and you have a prescription for that formula they should cover it.Sorry i wasn't much help just wanted to let you know your not alone! Good Luck
*EDIT*
I forgot to mention that i got some eggless mayo and they make egg replacer to use instead of eggs it comes in a box i didn't get to read the ingredients cause they were sold out.If i think of anything else i'll let you know!My son also has really bad eczema thats how i figured it had to be some kind of allergy making him flare up all the time!

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J.P.

answers from Houston on

Hi K.,
I understand what you are going through. My daughter had a milk allergy. I breastfed her exclusively up until she was 8 months old. We discovered her allergy when she was 3 weeks old. I had to cut out dairy completely from my diet and I remember thinking that there was nothing I could eat. I hated now being able to eat pizza, ice cream, cheeseburgers, even yogurt but I googled non-dairy diets and found foods that were safe to eat that wouldn't affect her. She eventually out grew it by her 2nd birthday. Best wishes and hang in there!!!

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K.B.

answers from Columbus on

I would try the baby on goat's milk which is closest to breast milk. I nursed my daughter for 16 months until I became pregnant with my 4th child. We tried her on cow's milk and she became sick- so we have her on goats milk. It comes in a can- and it is $ under 3.00 a can- each can makes 24 ounces. Goat's milk is the closest to breast milk- and it is also for allergic babies and toddlers. Hope this helps,K.

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R.W.

answers from Toledo on

I am a mother of 3 boys. My youngest is 5 and he has allergies to milk, egg, and has had an allergy to wheat. He can tolerate wheat now and I'm glad for that. It is hard to find things to eat. I also cut out all the dairy out of my life as he nursed for 4 years. It was a long time, I know. He will at times drink soy milk which has the same amt. of calcium and vit. d as milk does. Snacks are hard. I still don't allow eggs or cheese flavored snacks in my home even for our older boys who can eat them. Luke (the 5 yr. old) has even broken out in hives from touching something that someone else touched and had eaten dairy. That is why I don't allow those potential hazards in our home. Everyone seems to understand. The only advice I can give you is to take the time to read every food label and get a good allergist. Have the dr. prescribe her an epi-pen jr. in case she has a reaction worse than hives. Even the hives can show up in her mouth and throat and using the epi-pen will be necessary. I carry one with me everywhere I go. There are recipes online that you could use to make a birthday cake with no dairy or eggs. I use them and they work out great. Luke's allergies(allergy antibodies) are slowly getting lower but his allergist still wants him to avoid dairy(whey) and egg. He said that even with a low antibody count he can have a strong reaction. Things do get easier the older they get. They realize that there are certain things they cannot have. Luke will be the first one to tell you that he has food allergies and he is hesistant to try food that HE thinks are questionable. You also need to keep everyone who comes in contact with her informed and don't be afraid to ask them to wash their hands before holding or playing with her. Her life and health are so important. I'm not sure if any of this helps. I know it's hard and scary at first but you can adapt. R.

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K.M.

answers from Cincinnati on

K. B,

I have a son with a gluten allregy, which is also in A LOT of things. He can't have any "normal" kids food unless I prepare it special for him. Have you tried soy products? Those worked for Grey before he could have milk. As far as snacks go, just stick to "fresh" things like fruits and vegetables. It seems that a lot of kids are coming down with allergies these days. You might try searching on amazon for some books about your child's allergies and also look for cookbooks that exclude the foods you mentioned. I have a few cookbooks that have recipes without some of your daughter's allergens. If you want more information let me know. Take Care!
K. M

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N.H.

answers from Cleveland on

K.,
My daughter was allergic to milk and soy. So we had to feed her Nutramigen. I don't know if there's eggs in that or not but it was $25.00 a can instead of the $50.00. Also, we couldn't feed her any type of rice cereal because it all had soy in it. When it came time for baby food, we went right to it instead of any cereal. My daughter is now 17 months and has out grown of her allergies. easier said then done, but try to be patient. She will hopefully grow out of her allergies too. Best of luck. N. H.

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M.R.

answers from Cleveland on

Sorry to hear about the allergies. My daughter was diagnosed with a milk protein allegy in October. We have her on Allimentum which is only (yeah, only) 26.99 a can. I don't know if that would work but it's worth asking. There are some books at the library I got, the Milk Free Kitchen and another dairy free. It might not help right now but once your baby starts to eat 'real' food it might help. My daughter is now 17 mos so I'm not much of a help for food for the babies.
Good luck!
Mel

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C.H.

answers from Columbus on

My daughter was diagnosed with a casein and wheat allergy at 8 weeks old. She adjusted easily to soy formula and now at 14 months she drinks soy milk.

Her diet consists of fruits,veggies, chicken, beef, fish, rice and now rice pastas.

This was an adjustment, but like anything else you get used to it.

Making her baby food is easy. You buy fresh veggies, cook them or steam them and put them in a blender or food processor with the water used to cook the food. Portion the food into ice cube trays. Freeze. Label and store in baggies. When ready to eat, heat them up. As your child gets older, make the food chuckier.

We just bought the book - The Kid-Friendly Food Allergy Cookbook by Hammond and Rominger. It is great for a toddler!

AND - you can eat REAL butter. Your child can have real butter unsalted. There is NO casein in it and it is better for you. Our pediatrician has allergies and so does her child. She shared this with us and it makes life a little better when you can't have cheese.

Good luck. You can do it.

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S.S.

answers from Lexington on

K.
I have a nephew who has been allergic to milk all his life, I sent an email to my sister to see what advice she can give for the baby, I know as he got older they use lactose free butter and soy lactose free milk. For food she makes everything seperate for him, she also got buttons made for him so no one touched him that might have the chance to hav emilk on their hands or clothing.
Will keep you updated.
S. S

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T.J.

answers from Cincinnati on

My son could only drink the soy milk....have you tried that? You can buy the generic version at Walmart or Target.....with the same ingredients!! Hope this helps!

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L.P.

answers from Louisville on

Aww, that's tough, I'm sorry! I can't give you a lot of advice on the allergy side, because I don't have any and neither do my kids BUT as fas as finding food for your kid to safely eat I think that once you get the hang of it it won't be so bad. My kids and I don't eat meat or drink cows milk for personal reasons, and we're hardly starving. Veggies are always safe! Your child will probably be very healthy in the long run. I would suggest you consult a nutritionist/RD (doctors know very little) and make sure that everyone who cares for your child knows about her allergies and what to do in case of an emergency. It's not good enough that 1 person at her daycare (if she goes) knows (b/c of lunch breaks and vacations), you have to be vigilant about that and get an EpiPen if appropriate and make sure they all know how to use that as well. Good luck.

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D.B.

answers from Cleveland on

Hi K. B.

You need to call me asap! My cell is ###-###-####. I have a little boy with similar stuff going on. How did you find out about the rice? That is not something I thought of. I am 100% sure about milk and pretty sure about the eggs to. I just sent out an email about being hypoglycemic right now and much of that is because I have had to cut practically everything out of my diet too! So hard. I may have to stop nursing. Did you? We are using Neocate too now...only for a few days. We need to talk! Is your baby on solids yet? I have heard that they will grow out of it. Allergies are usually genetic (my hubby's side has them). Let me know when we can talk or just call me.

Good luck.

Blessings,

D.-Bradt

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