Help! Dr told us to go dairy free but no advice!

[kaygeebee]

So I've noticed that my BF 6mo son comes up with hives after dairy. I took him in to GP today, and was told to keep him off dairy until he is older than 1, but no further advice. eeek

I've long suspected that he reacts to something in my breastmilk, but didn't know what, as he has been an unsettled baby at times since birth - he is also very gassy - often violently gassy which seems to accompany crying fits.

Help - where do we start with a dairy free diet for DS? Do we have to check all labels for dairy, and cook everything from scratch or not worry about things he doesn't seem to react to? Should we replace with soya products or stay away from these?

How about me? Should I be cutting out dairy, or will it make no dfference by now?

Sorry, lots of questions, but I've been thrown, have found my GP no help and don't know where to start.

Am I right in thinking that hives indcates CMP allergy rather than lactose intolerance? How would we go about finding out? Is this potentially very serious or am I making big thing out of something small?

Hi kaygeebee

I have a dd with a milk allergy. She is lactose intolerant and has a milk protein allergy (any kind of milk from a mammal - goat, cow, human even).

First of all dont stop breastfeeding

You need to cut out dairy in your diet. This means getting a diagnosis from doc as to what your ds is suffering from as lactose intolerance and milk allergy is not the same thing.

Cut out the main things such as butter, milk, ice cream, cheeses, yogurt, cream etc... see how it goes, if hes still fussy after two weeks, it may be the milk protein allergy he has, this is harder to deal with, but gets alot easier as time goes by, you get to know what you can and cant eat...casien, whey powder are other names for milk protiens, these can be found in breads, cakes, gravies, stocks, pancakes - most things

There is no actual test that docs can do to determine milk allergy but there is one for lactose intolerance, but you will have to see if they will do it on a baby as it involves breathing into tube to measure hydrogen and methane levels after drinking a lactose solution.
Symptoms tend to be pretty straight forward as you have described:

Milk Protein allergy symptoms: gassy, fussy, crying, irritable, lethargic at times, constipated or green mucousy stools (with milk protien allergy blood can sometimes be seen in stool), colic, reflux, being sick alot, runny nose tends to go hand in hand with milk allergy.

"A milk allergy occurs when the immune system mistakenly sees the milk protein as something the body should fight off. This starts an allergic reaction, which can cause an infant to be fussy and irritable, and cause an upset stomach and other symptoms. Most kids who are allergic to cow's milk also react to goat's milk and sheep's milk, and some of them are also allergic to the protein in soy milk." Kidshealth.org

"Lactose intolerance occurs when the body makes too little of the enzyme lactase, which is needed to break down lactose into two smaller sugars called glucose and galactose. When there's not enough lactase in the body, lactose doesn't get broken down in the small intestine, and it passes into the large intestine where bacteria ferment it into gases and acids. This process can cause cramps, abdominal pain, gas, and diarrhea about 30 minutes to 2 hours after consuming any foods or drinks that contain lactose."

Children can grow out of these by the age of 3-5yrs, but some never do - like my dd...

Items I use include:
Alpro Soya milk and yogurts
Vitalite margerine
Warburtons/Hovis Bread (though there are others out there)
Asda do a few soya products of their own which actually taste better than alpro.
Bisto roast onion gravy
There are actually quite alot out there, you just have to get used to looking at ingredients. Ive been doing it for the past 2 years and got it down to a tee -can read backs of tins etc...so quickly
Eggs are fine. If its lactose intolerance - some cheeses are okay too - my mom eats pizza's, though dd cant cause of milk protein allergy.

Take a look here at kidshealth for lots of info...

If you do end up deciding you cant go without choc - though actually plain choc and hot chocolate in cyllinder tub are fine - then you can swap to soya milk ( i used cow n gate infasoy for dd from 3 months ) alpro soya can be added to food from 6 months but dont offer as main milk just yet stick with formula if you really have to or persevere with the BF.

Dont whatever you do offer goats or rice milk as this is not recommended for infants.

And another tip, if its just lactose intolerant you may find giving ds a dose if infacol every day helps too.

well I think thats it...lol

to answer your last Q

CMP can only be fatal if your ds has anaphelactic shock - rare. My dd went 3 months with rash all over her face, puking her tiny guts up and having her intestines practically ripped to shreds before the HV would take any notice and even then when I went to doc, she didnt run tests, gave no support and just prescribed soya formula. Thought I had no other choice.

Yes the CMP can cause a rash, like hives, small red spots, like lots of red raw milk spots...bathing in just plain water helps it. Not being wrapped up to warm - noticed dd got worse when she was hot. It also causes projectile vomiting - I think every inch of our flat had some sick on it
We even had it all planned out, when we saw her go to puke wed rush her to the kitchen floor and hold her out, so it wouldnt go on th carpet (oh gosh we were bad parents , but didnt know what it was then).

Such a lot of good advice on Mumsnet! Can your miserable doc give you a referral to a paediatric dietician to help you here? Can your health visitor help? Lots of sympathy.

Thank you Chellesgirl - such a lot of good advice there.

I have only started to notice the hives as a definite effect after dairy when weaning and introducing DS directly to dairy. As a smaller baby he used to get them occasionally after feeds and I assumed it was just a heat rash. How bad a mummy do I feel?

I will try and speak to my HV this morning and take it from there ........ I guess the first thing is to push to try and establish exactly what this is.

It is not true that there is no test for CMP allergy, Chellesgirl. There is RAST testing, a blood test that checks for IgE of specific allergens, and skin prick testing also.

You should ask your GP to be referred to an allergy specialist, and a dietician as it is important that your little one still gets the calcium they need from a balanced diet, without cows'milk. I would say it is probably best to avoid soya, for now, as CMP allergy and soya allergy often go hand in hand.

And to clarify, It is also not uncommon to suffer bith CMP allergy and Lactose intollerence at the same time.

To begin with, it is difficult to think about your diet in a different way, reading labels and cooking differently. I would definately recommend you go dairy free, too. It made a HUGE difference to my DD whilst I was breastfeeding, plus it makes it much easier in the long run, as you find yourself checking labels even more thoroughly! It does get much easier, though and soon becomes second nature.
Good luck!

Also, for under one's, if you plan to stop breastfeeding, you should not use a soya formula but ask for a hypoallergenic formula, such as neocate or nutramigen, which are hydrolised. These can also be used in cooking, or you could substitute it with forified oatmilk for cooking. I also disagree with Chellesgirl about the rareity of anaphylaxis. There is no way of knowing how severe an allergy your DS has without further testing.
It is possible to have a much more serious subsequent reaction than hives, rashes and vomiting after each exposure to the allergen. We know this in our household from experience, and it can be very frightening. For this reason, your doctor should prescribe Piriton antihisamine syrup, and explore the need for epi-pens, depending on he serverity of his allergy.
Also, as he is so young, i would ask for allergy testing for other major childhood allergies, such as Egg, peanut, tree and ground nuts. It IS common to have more than one type of food allergy.

Hope this helps.

Sounds as though it is an allergic reaction since he gets hives. I'm afraid as he is so young they are unlikely to do any tests yet. As tests don't really help with severity of allergy they aren't essential yet - good advice is. Epipens aren't usually prescribed under one unless there has been a more serious reaction, piriton should be around all the time. It may not be serious long term, many babies do outgrow this as their immune system develops. Breastfeeding is one way to encourage that.

I'd encourage you to avoid dairy in your diet for at least two weeks then reintroduce and see if it makes him worse. If you can do without until a year that would give more chance of outgrowing. You can have calcium tablets, rice milk or soya milk, don't give those to a baby of this age.

Best to wean carefully and with piriton handy in case of other allergies but don't get too hung up on that.

Lots of advice on these forums on diet but any specific problems just ask. A referral to a paediatrician dietician would be useful for you.

I would ask to be referred for allergy testing as well. They can do blood tests or skin prick testing for allergies.

I would avoid soya for the moment. My DS developed a soya allergy after having too much of it on the advice of a dietician .

If you decide you want to give up bf before he is 2 then you will need a specialist formula as cow's milk substitutes aren't nutritionally adequate before 2.

Rice milk is not recommended for children under 4 because of the arsenic levels in it, so if you are also avoiding soya then oat milk (oatly) is the best, the red carton is fortifie with calcium and you can get it in Tescos and some other supermarkets.

Pure or vitalite are good butter substitutes.

I would give up dairy yourself while you are breastfeeding, i had to with my DS.

the problem with paed dietician is that it is all a bit 'milk and cheese are dairy products......' uh yes, got that, and? err that's about it really. Truthfully I always found dietary advice from them a bit pedestrian to say the least and researching it yourself is for the best. My two had some sort of dairy thing going on when they were younger - not hives and all that but gut reactions and excema. Turns out they had coeliacs as it happens and again the paed dietician is a bit basic to be honest. If you are an intelligent person it is all a bit lowest common denominator. Neither if them have an issue with dairy at all now!

If BF then you should give it up to but you have to watch your calcium levels as BF so being careful with your diet is essential.

Thanks for the replies, this is really useful stuff. x

Sorry nelly, my dd didnt get any testing done, just fobbed her off with soya formula (can be given from birth if needed) but yes I agree nutragimen AA is a def yes ( i only found out about this formula about 4 months ago)

There's no single lab test to accurately diagnose a milk allergy, so your doctor might order several tests to make the diagnosis and rule out any other health problems.

In addition to a stool test and a blood test, the doctor may order an allergy skin test, in which a small amount of the milk protein in inserted just under the surface of the child's skin with a needle. If a raised spot called a wheal emerges, the child may have a milk allergy.

The doctor may also request an oral challenge test. After you stop feeding your baby milk for about a week, the doctor will have the infant consume milk, then wait for a few hours to watch for any allergic reaction. Sometimes doctors repeat this test to reconfirm the diagnosis. - not really reccommended for babies though - I mean how do you stop feeding them 'milk'. I think they mean dont feed them dairy products/dont consume any yourself.

btw calcium can be found in :

Salmon, Canned, with bones, 75g; 185 mg Calcium
Rhubarb, cooked, 240ml; 174 mg Calcium
Oatmeal, fortified 240ml; 163 mg Calcium
Spinach, frozen, cooked, 240ml; 138 mg Calcium
Tofu, firm, 240ml; 258 mg Calcium
Almonds, 240ml; 92 mg Calcium
Beans, boiled, baked or refried, 240ml; 50 mg Calcium
Mustard greens, cooked from fresh, 240ml; 52 mg Calcium
Orange, 1 medium 52 mg Calcium
Halibut, baked, 75g; 51 mg Calcium
Kale, fresh, cooked, 240ml; 47 mg Calcium
Broccoli, cooked from fresh, 240ml; 36 mg Calcium (a good source of vitamin D)
Bread, whole wheat, slice; 32 mg Calcium

Table 1: Adequate Intakes (AIs) for Calcium [1]Age Male Female Pregnant Lactating
Birth to 6 months 210 mg 210 mg
7-12 months 270 mg 270 mg
1-3 years 500 mg 500 mg
4-8 years 800 mg 800 mg
9-13 years 1,300 mg 1,300 mg
14-18 years 1,300 mg 1,300 mg 1,300 mg 1,300 mg
19-50 years 1,000 mg 1,000 mg 1,000 mg 1,000 mg
50+ years 1,200 mg 1,200 mg

couldnt be arsed to correct all that table stuff - sure you can work it out

Chellesgirl, I'm afraid you are misinformed, there most certainly IS a single test for milk allergy, IgE blood tests, along with clinical history is fairly accurate. I have never been asked for a stool sample for my DD, and she has multiple allergies.

Soya formula is, like nanny formula, absolutely not recommended anymore by HCPs, due to the close links between CMP allergy and Soya allergy. There are over 20 protein types in cows'milk which can cause allergic reaction, some of these chains are similar to both soya and goats'milk proteins. Beyond this, soya contains high levels of phyto-oestrogens which I certainly wouldn't want introduce to my childs' diet, especially a boy like the OP.

From what I remember, neocate is more fully hydrolised than nutramigen, and less likely to cause a reaction to CMP allergic infants. I believe it is more expensive, and for this reason, less likely to be prescribed, but worth pushing for. Though they both taste revolting!!

i would also consider asking for a referal, testing for ige can be done, and its wise to be with a decent immunologist, to advise you regarding diet. and to test safely to see if outgrown or not.
also can help if other food allergies develop.

My daughter has a milk protein allergy, this was diagnosed by a great consultant when she was 10 months old (with a blood test). She was actually in hospital on a drip for adeno virus at the time.

She had very severe eczema and hives, projectile vomited, has continuous coughs and colds and so on. we were previously ignored and told she would grow out of the vomiting and eczema.

She is on neocate now and it is fantastic. She is a completely different child (probably because she is not constantly trying to shred her skin).

We use the neocate for cooking too and buy other bits and pieces from the freefrom range that Sainsbury's/Asda do.

nelly I wasnt informed at all - the stuff I researched is from Kidshealth.org

this is the problem sometimes with GP's they dont want to really persue anything when they child is so young. No one would listen to me until I finally made a doctor listen - and then she sinply just gave the soya formula - from cow n gate.

I agree the estrogens are in Soya products and yes it can cause boys to 'lose' a testicle or grow breasts. Nutragimen AA - not the normal one is fully hydrolyzed but is as you said sooo expensive - but I have spoken to some mums and dads (funny enough on cow n gate website) that use Nutragimen AA and have been presecribed it by the docs after kicking up a fuss. If I had known this was available for DD then I would have kicked up a fuss too.

I am though going to take DD back to docs and see if they can do a blood test as you say - cause she eats mcdonalds fries (that are soaked in milk) just fine, but when she goes near milk/cheese etc...she sicks up within ten minutes of it being digested

Mcdonalds fries are not soaked in milk.

There has been many law suits against Mcdonalds for not disclosing the fact thier fries contained 'beef' so they soaked them in milk instead (so that the vegetariens could eat them) Now on thier British website they say that the fries dont 'contain' milk - in america they are still soaked in milk. - how do we not know they arent still lying??? It does not say how the fries are prepared. even the chicken nuggets contain milk - eek cause dd has eaten these, also the hamburgers are a ' ! ' for milk.

DD was diagnosed with dairy allergy at 6 months via skin prick tests. They cannot test any younger, so they may be reluctant to test just yet. I would definitely push to get him referred to an allergy clinic, which would also give you access to a dietician (I agree a bit basic, but can answer questions).

The one thing you need to find out is if your DS is also allergic to soya - dairy and soya allergy often go together, but if he's OK with soya, your life will be much more straight forward - things like soya yogurts, cream cheese etc give you a few more options. If you use soya products you need to go for the non-organic versions, as the organic ones are not fortified with calcium, which you need to make sure he gets. Its also not uncommon to have multiple allergies, so if you can it may be better to test rather than find out by trial and error.

For the same reason, it is better to have the hydrolised formula (neocate etc) but it is foul, even assuming your BF baby will take a bottle at all (mine wouldn't).

On the BF, the allergist we saw was insistent that it was rare for the allergens to pass through breastmilk and that I needn't worry about my diet. I'm slightly sceptical of this, as DD had raging eczema linked to her allergies before she had had anything other than breastmilk. So I'm not sure its clear cut.

Chellesgirl the "facts" you quote are from one suit in 2006, in america. "How do we know they are not lying?" You know the answer to that, because mothers like us with allergic children would be suing mad! Categorically, they do not use milk. My DD is anaphylactic to CMP, and has eaten McDonalds fries.

McDonalds fries are definitely not soaked in cow's milk. MY DS eats them all the time has them occasionaly and is very allergic to cow's milk and has never reacted.

My youngest is severely allergic to all dairy and after GP referral to dietician and our joining the invaluable Anaphylaxis campaign we feel more and more confident about keeping her safe. It becomes a way of life and she has become her own best defence as she grows older. wishing you all the best, Joonie

Thanks ladies.

I have gone dairy and Soya free for now. If things improve, I may reintroduce Soya and see if that can be tolerated OK or not.

HV has advised breastfeeding for as long as possible (which is what I was planning on anyway) and we have some Nutramigen in that I can use in cooking / in case it is needed. HV has given me access to a dietician to ensure my diet is adequate. Hell, this could even turn out making me healthier!!

I have a paediatrician appt on 1st april, so will push for more testing then.