Cows Milk Protein Allergy in a 7yo - just diagnosed

[tinseloatcake]

My 7yo has just been tentatively diagnosed with cows milk protein allergy. She has been eliminating all dairy for a few weeks now and is well again, but I dont really know anything about this. and anything I can find after a quick google relates to babies - I guess it is less common to be diagnosed at such an age.

does anyone have any idea of the implications, differences of what she can eat compared with lactose intolerance, and anything else I need to know. We are awaiting a dietitian appointment.

Thanks

Not sure if I can help, DD is IgE to cows milk (plus egg and peanut) and my DF is newly lactose intolerant, so I've cooked for both.

Is your DD IgE or non-IgE as that might make a difference. How you deal with it also depends on whether she can tolerate a certain amount of dairy?

from a quick google non-IgE. I guess that it is. Wondering whether she can tolerate something. Also whether there are some differences in what I thought she can or cant have, or not.

Thanks for your response btw - I hope you dont find cooking too difficult!

It's hard to cook at the start but you get used to it. DD also has coeliac disease so it's a bit awkward!

Obviously you'll get better advice from the dietician but it might be best to start with a completely dairy-free diet, then once she's feeling more stable you might be able to test and see if she can tolerate baked milk. There's a dairy ladder for testing reintroduction of dairy and you can slowly work up it until you get symptoms. Non IgE is easier in that you won't be risking anaphylaxis but it's harder as you have to go slower when you wait for delayed reactions over a few days.

Lactose intolerance is well catered for in the supermarkets as there are a growing number of lacto free products. There are fewer for completely dairy free but the vegan market is expanding quickly so more options there. Do always check and 'free from' labels as some are only gluten free and not milk free!

Does your DD have school meals? Our school is amazing and cater for DD with dairy/egg/gluten free meals. Some parents prefer to send a packed lunch, it'll depend on your school. I have complicated discussions with the cook as DD can now tolerate baked dairy but still has anaphylaxis to any uncooked milk.

I have a 15 year old son who is allergic to cows milk (and a lot of other things!). You are right that most of the info relates to babies, as the vast majority of CMPA individuals outgrow it by school age so it can feel a bit lonely if you are one of the few that don't!
You will get used to it but it is hard at the beginning as milk is in so many bought foods - watch out for milk in bread etc. My son can tolerate small amounts of hidden/cooked dairy now but at the beginning it is best to strictly avoid everything. Products for lactose intolerance are often unsuitable as they usually include cows milk protein. You might also want to avoid soya initially as up to 50% of cows milk protein allergic people also react to soya. We are lucky in that DS is fine with soya products.
I can't write any more now as off on a bike ride with DS but I've got 20 years experience of CMPA as my older children also had it but outgrew it so feel free to ask me any questions either here on by DM.
It is hard initially, but honestly once you get used to it it is fine and you may even find you are all eating more healthily as a result.

This is really helpful, thanks.

Dd has woken up today feeling a bit poorly and she had soya twice yesterday, so that might explain it. I think we will reduce it.

School have so far been great - they just switched her to an allergy menu day 1. No questions asked.

I actually feel so relieved that we know what it is about now, and heartened that she might grow out of it.

Thanks for help so far, any more tips welcome!

There are lots of non dairy alternatives available these days which mean you can avoid soya too. It's important to ensure she eats a wide variety of foods and gets enough calcium in her diet. She may need vitamin and mineral supplements, but the dietician will help with that.

Read labels constantly, what was fine last week might not be the next. Flavourings can have dairy products in them so some roast chicken flavour crisps/gravy granules will be off the menu.

Some people think margarine is dairy free as it isn’t butter, but most margarines do have dairy element in. We used Pure one when DS had his dairy allergy.

@tinseloatcake. Am I ask what her symptoms were and how you got her tested/diagnosed? I keep wondering if dd1 has some sort of milk allergy/intolerance as she suffers with very bad stomach pains and is quite bloated a lot of the time.

DS had suspected CMPA (turns out he probably doesn't but won't bore you with irrelevant details) and I went dairy and soya free as well as I was breastfeeding him. So for a more 'adult' take on dairy free diets you might find useful information in groups for mums breastfeeding CMPA babies.

Things I found great were oatly products (not just milk, their ice cream and creme fraiche are delicious) and nutritional yeast stirred into pasta dishes or risotto gives a cheesy taste like parmesan. Oatly barista is fortified with calcium but I don't think all the other versions are so it's worth checking.

If she needs to eliminate soya as well, bread products are an absolute pain for containing soya flour so watch out there.

This is really good thanks. She had more soya today as it was a lovely treat and she wanted to try it. She has fatigue, nausea and straight to the loo, so there is definately something there.

Her symptoms have been fatigue, nausea, irritable bladder, thirst. Fatigue to the level of missing weeks of school, unable to do swimming lessons etc. Had it for years, I used to have to carry her to school and back when she was little.

She's been tested for coeliac, diabetes, full bloods done a few times so quite a long road to get here.
Thanks for tips about re checking labels, she is very vigilant about it which helps as are her siblings.

We seem to be doing ok with subs, although she doesn't like the soya yoghurts ( which are now off the table anyway) and is doing ok without cheese although dh and I are eating lots when she is in bed! All I want in Mac and cheeeeeeese

Nutritional yeast sounds good.

Flora original is dairy free, it does not come out of a clean factory but I have had no problems with it.

Oatly milk is good as are some of the pea ones. Alpro chocolate almond is a great treat, in mochas for adults and milk shakes for kids.

My mild allergy took full advantage of menopause and now I have to be strict rather than casual. Have been steering clear of soy as well and although a total pain, it is totally worth it symptom wise.

Other symptoms: excema, much smaller than siblings and painful joints although I have nothing linking that to the allergy - except that she doesn't have it any more

You can get fake cheese but that might be soya so no use, it has been quite a few years since DS had his allergy and he was ok with soya.

I have a vegan teenager - she prefers oat and coconut milks to soya. You can also get coconut yoghurt (Lidl do own brand ones) and cheese substitutes (cheddar and cream style).

Strongly recommend joining some vegan FB groups - Plant Based On a Budget, Vegan Families UK are both good. Yes it's vegan rather than dairy free but still very useful info!

Marks and Spencer has a good range of vegan cheese products - one of the best I've seen if you're near one of their larger foodhalls.

Coconut yoghurt and ice cream are nicer than soya IMO. I prefer hazelnut or almond milk to soya in things like porridge and hot chocolate.

I'll join an FB group and also yes to large m&s; there is one near.

I'm on the hunt for coconut ice cream

Oatly do an almost indecently good chocolate-fudge ice-cream, available in Tesco. The vegan Ben & Jerry’s flavours are made with almonds, but they contain some soya. Frustratingly, lots of sorbets [may] contain milk, though they absolutely shouldn’t.

Naturli is expensive well it is to me but it’s available as both a spread & as a block like REAL butter, & doesn’t have any soya in it.

Violife cheese is quite nice (should probably state here I’ve never had Real Cheese, but I know people who have who think it’s good) & is soya-free. It doesn’t melt in the same way Real Cheese does though...

If you’re cutting dairy & soya, not all oat/coconut/nut milks are as fortified as soya tends to be, so it’s sensible to supplement your DD’s vitamin D[3] (she may not have been absorbing it properly from dairy if she can’t process the foods properly in the first place) & make sure she’s getting plenty of calcium-rich foods in her diet. 400 Units/10mcg is the recommended daily dose of Vitamin D for children & there are heaps of supplements available. Optimising vitamin D levels will mean your DD then absorbs all of the calcium she needs from her diet - if her vitamin D levels get too low then that stops happening. Vitamin D deficiency can cause joint pain, too - and indeed horrendous fatigue. Was it something they checked when they did bloods? Vitamin D deficiency is ridiculously common in the UK, but...

It really is much MUCH easier to navigate allergies of all kinds now than it was even a few years ago: everything’s so clearly labelled & there are heaps of products easily available as well as a wealth of information online.

While you’re waiting to see the dietitian, if you’re not doing so already, keep a symptom diary; & a really detailed food diary. Don’t let your DD know about them though, you don’t want her worrying about any of this, starting to overthink everything her body does, nor to start thinking about food in any kind of unhelpful/unhealthy ways/becoming anxious about it - which a totally understandable focus on it by worried parents can inadvertently cause. A really detailed food diary is important for the dietitian because not only might they see things that you’ve not (it could be the soya is Not Guilty, for example, though obviously bloods are what you need to sort that out) it’s how they can best advise on how to support your DD’s nutritional status for optimal health & to help ensure you (& she) feel confident about managing a dairy-free diet.

(I have an anaphylactic dairy allergy & respond to frankly ridiculously small amounts, so have been doing this for a long time.)

I have a 3 year old with a CMP intoleraance. He has been unable to have cmp since birth, but had successfully started to have some, before being poorly again. So we're now back to completely dairy free. There is a fantastic selection in most supermarkets of free from products. We use oatley milk for cereal, and use Alpro yoghurts (not great if there's an intolerance to soya as well though).

For baking, we use stork blocks (not in the tub as they have milk in), and make dairy free cakes which we all eat. We have dark chocolate as treats, or moo free. A lot of products are dairy free though, like oreos, most bourbon biscuits, ginger biscuits etc. I'd recommend joining one of the Facebook cmp groups as they often have great ideas for meals/snacks. I often buy from the vegan range in supermarkets, especially for things like pizzas, or the we make our own with dairy free cheese. You get used to checking everything after a while :)

One of my children is dairy free, the main things we buy are...

Naturli vegan block which is a great butter substitute for making cakes or baking.

Oat milk, we actually buy the sugar free Alpro or the Aldi version as the Oatly one has quite a lot of sugar in it. Not sure about the calcium content.

Violife cheese is the best I’ve found so far, vegan cheese is not great so that will be trial and error to be honest. I’ve just found a Violife chocolate spread too!

Moo free or Mini Moo chocolate is great.

Oreo biscuits and Lotus biscuits and their biscuit spread is vegan. So is dark chocolate, but check all ingredients.

You can buy Vegan Magnums and Cornettos, Oakley and Wicked do dairy free ice cream tubs.

We buy Pure spread or Vitalite.

You’ll get into the habit of checking everything. Be careful with bread. But it’s actually surprising the amount of stuff that doesn’t have milk in it. Check mayonnaise too!

And go nuts at Christmas, I buy loads of mini moos and dairy free chocolate to keep a stock.

@tinseloatcake
Sorry for the double post, Allergy UK have a food & symptoms diary you can just download & fill out.

As it says on the website, you can do a couple of sample weeks, but in all honesty, a dietitian isn’t going to mind you providing more information as long as i. it keeps to the same level of detail & ii. you understand that they may not be able to read the entire thing in detail then & there (I’d expect them to skim something long & take a copy for notes).

If you have details for the department you’re being referred to, once you get a date for the appointment you could send a copy of the diary to them eg 2 weeks beforehand with a request it be added to your DD’s notes &/or made available to the dietitian you’re going to see. (I’d speak to someone in the department first, obviously, to check how best to arrange this.) Being able to provide the food & symptoms diary straight off may mean that you don’t find yourself basically told “please go away & write down the things you’ve just been telling me about & then we can repeat this conversation in a few months”.

Some people with CMPA are OK with sheep & goat's milk and cheeses. And buffalo mozzarella for pizzas. Another substitute for baking is rapeseed oil, Google Farringtons mellow yellow or Hill Farm oils.

If she misses yoghurt try the oatly yoghurt. Soya and dairy free. My son loves it. Actually all the oatly products are great. Cheese wise the best we've found is violife, or as others have mentioned, nutritional yeast added to pasta sauce (made with oatly cream). Vegan products can help expand her diet too as will always contain no dairy.

This is amazing, thank you so much to all of you.
I'll read through it all a few times.

We have a cheese - she says it tastes like chips - amusingly! and it never goes off wierdly. She leaves it outmostly.
She likes "oat no sugars" milk, we got lots of options in at the start.

I've found oreos and boubons, this is good. One of the issues is that she is the middle child of 3 very close in age children, so it is all about fairness, and noone having anything better than another, so normal food they can all eat helps immensely. I do a lot of home baking, so that is easy, it is more snacks after school etc which need to have parity, so ww3 doesnt break out.

Im off to have a wander through the virtual aisles of morrisons.
And m&s in the week.

And back to food diaries - you are right. I find them so tedious. I also do one for another dc who has continence issues...