Signs & Symptoms - back to the start

Signs

 Have you ever noticed these - on your shopping trolley?

Have you ever stopped to take in just how many signs there are around us? Looking for a sign to illustrate this post, I suddenly realised just how many there are - they are well everywhere; it's like an epidemic (just try counting them, next time you go out somewhere). But how many of these are completely necessary - of how many do we actually take notice or even understand? With Baby the signs were there, clear to read - if only I had known how!


Going over old ground
For those of you who have been following the 'story so far', some of what is written in this post will be familiar to you. Sorry if I bore you by 'going over old ground', but I have in mind those new to this blog, who might be wondering whether they or someone close to them might have a problem with milk - in which case this particular post (focussing on what alerted us to Baby's problem) could perhaps prove useful. So, for the purposes of this post, I'm going...

Back to the start

By the time I eventually saw our family doctor, the diagnosis of cow's milk protein intolerance had already been reached and clearly proved. In some ways, I wish I'd visited the family doctor first (rather than the two locums I actually saw) as, when he asked me about her symptoms and I rattled them off, he nodded and agreed that they were classic signs. 


Truth to tell, I'm not entirely sure when Baby first exhibited signs of having a problem, but as we were having other issues at the time (let alone the fact that we were trying to get our heads around having a new baby) maybe I just missed them to begin with. All I know is that I first became aware of soreness in her nappy area, around two weeks into her little life. 'Agh! Lie still!' I would yelp in frustration. Baby would writhe with an incredible show of strength in her tiny frame, and I would struggle to change her. 

As soon as it dawned on me that her resistance was due to soreness, I felt horrible rush of guilt for feeling so frustrated. Immediately resolving to be more gentle when cleaning her up, it took at least a few more days for me to realise that the writhing preceded, not just accompanied each nappy, and that the nappies were rather frequent. Were they too frequent? I didn't know/couldn't be sure however, the signs seemed to escalate - particularly at night. This was when the cycle of feed, cry, nappy, cry much more, feed again to comfort and soothe, seemed to be endless and I was lucky to get a few hours sleep. 

Seeking help

The Hub being back at work was sympathetic but, being able to do little about it (although he did turn to his favourite reference book - the Internet, searching for clues) managed to sleep through. I was exhausted. Quizzing the midwives got me nowhere, neither did two visits to the doctors. I was getting near to the end of my tether, and wondered whether it would do any good to go to A&E - I wasn't sure if it would fast track  us to being seen by a paediatrician or whether I would be dismissed as an over worried first time mum. And then came the decision to see someone about her tongue tie. To get a private referral. 

I sometimes wonder how things would have turned out, had we not 'gone private'. How long it would have taken to get the correct diagnosis - after all I'd already seen two doctors locally. I've met others for whom it has taken longer - although they had different symptoms such as reflux, vomit and eczema. All I know is that the time for which it lasted seemed unbearably long. Part of me felt it must be what having a new baby was like whilst another part of me knew it was wrong. 

Baby's Symptoms

Thankfully we did see the paediatrician, thankfully he enquired beyond the tongue-tie , thankfully he was a specialist childhood allergies, thankfully to him our case seemed pretty straightforward. Once I had described, in as much detail as I could, what had been happening, the paediatrician was able to make a fairly swift diagnosis; the diarrhoea, the writhing prior to a poo (presumably caused by tummy cramps), the frequent explosive blasts of yellowy brown watery poo, all taking place not long after a feed. These, in addition to the sore botty that wouldn't clear up (burning caused by acidic poo) all pointed to one thing as far as he was concerned - cow's milk protein allergy. 

'Testing' the diagnosis

Me, wanting to be sure that he knew what he was talking about (having had two misdiagnosis, I was understandably cautious) questioned how he could be so sure. Apparently, at the age Baby was then, (she was just a month old) the only two likely causes of all her discomfort and distress were an infection or cow's milk protein allergy. Due to fact she was being breastfed, and so young, the infection was the least likely but (to rule out the possibility) a sample was to be collected and tested. Meanwhile, I was to steer clear of all products containing the slightest amount of cow's milk. 

It was this latter course which was to prove the diagnosis. Sure enough, within about three days, the symptoms had vanished and I had a completely different baby. It felt like the miracle for which had been praying. The test results, which were to follow later, merely confirmed what we already knew - there was no sign of an infection.

Other symptoms

The symptoms I have described are common to many other food intolerances or allergies. There are, however, quite a number of other possible symptoms that can accompany the same condition, such as:


Bloating
Flatulence
Reflux/vomit
Feelings of nausea
Stomach rumbling
Colic
Constipation
Eczema
Hives
Wheezing
Headaches
Dizziness
Lethargy
Itching
Runny nose
Swelling
Weight loss (if left)
Malnutrition (if left)


Interestingly enough, it seems that individuals can exhibit a different set of symptoms at different times of their life. So a young child might begin by exhibiting symptoms affecting the gut, but later (when they're older) have the kind of reaction that affects breathing.

How can one know for sure?

If you are trying to work out whether you or someone else you know might have this problem, it can be quite tricky to find out. It's easier when they're a baby, as problems with cow's milk among babies are fairly common. It is possible, however, for symptoms to go unnoticed, or for people to develop symptoms later in life. Older sufferers have much more variety in their diets and so identifying the cause of a problem, can be like looking for a needle in a haystack. So what about diagnostic tests?


Quite a lot of people have heard of skin prick tests. Medical opinion is divided on how useful they are and blood tests don't always detect problems that do exist, as I found out following the tummy bug I had the other year. Part of the problem is that such tests work on detecting a response in the immune system, which might occur with an allergy but not with an intolerance.


A first step towards pin pointing a problem might be to keep a food diary - listing everything that is consumed, alongside any possible symptoms. Doing this can help to identify patterns and perhaps the cause. Following this, excluding 'suspects' from your diet  (one at a time) can help confirm what is triggering the symptoms, and therefore what is causing the problem. 


These so-called 'exclusion diets', such as the one that Baby and I have had to follow are most reliable way of confirming that a food is causing a problem but it is recommended that these are carried out under medical supervision, as are food challenges (where following an exclusion, a small amount of the 'problem' food is reintroduced back into the diet). This is because otherwise you could be missing out unnecessarily on important nutrients.

So how do I know?

Although the blood tests that I had (following my tummy bug) the other year proved that I wasn't coeliac, the fact that wheat along with other certain foods caused me intestinal pain and dihorrea, (accompanied by headaches when the reaction was particularly strong) was enough to convince the doctor that I was intolerant to some foods. Like with Baby's problem the unknown factor was and remains - whether the intolerance will be short lived or last for life.

Shopping Around... Dairy Free

When we first started shopping dairy free, I must admit I was a bit daunted. I mean, I knew that I was safe with plain meat and fruit and veg but there had to be more to food than that!! Would I have to give up cakes, biscuits and chocolate? It's all very well being born with a milk allergy - you never know what you're missing, but when it is suddenly thrust upon you (and until now you've been able to eat whatever you like) you know exactly what you're missing! 

Fortunately, as I was to discover, there is food that you can still enjoy out there... somewhere, it's just finding it! 



First, know your 'enemy'!

So you've got the list? You know the one that goes like this...


Check labels for: 
milk (including skimmed, semi skimmed, evaporated, condensed, dried, longlife, sterilised)
buttermilk
butter
cheese
quark
cream
yoghurt
fromage frais
casein
caseinates
hydrolysed casein
whey
whey solids
whey syrup sweetener
milk solids
non fat milk solids
lactose*


Yes? Well, now you have it, anyway!

This'll be the list that you'll need to assist you in your shopping! The list looks a bit long long to remember off by heart, but of course most of these do not need to be learned off by heart as they are pretty much common sense. It's the unusual words, that you never realised had anything to do with milk (for me it was 'casein') that really need to be taken in. By the way, watch out for 'lactose free' - this does not mean 'milk free' or 'dairy free'!

Update 2019: You no longer need to carry around this list in the EU, because of statutory requirements that mean that all food products have to clearly denote the presence of the top fourteen allergens (one of which is milk). However, it is still worth knowing your enemy, as other products such as shower gels etc. do not have to declare the presence of the top 14 allergens. I have recently found a really comprehensive list of allergens via a US Allergy Charity which is really comprehensive. Please click here.


Checking the labels

Dairy free shopping means checking the food labels on every food product you purchase (even if you have bought the product before, as recipes and ingredients can change) and being aware of all the ways that milk might be referred to on these labels. It can be a bit of a chore. 

Once upon a time, it was much more difficult to source suitable products, I believe health food stores were pretty much the only option (I shudder to think what people did before these came along). Now the big supermarkets have got in on the act; they've cottoned on to the 'need' or 'market' and made things slightly easier for us - in that they not only stock specific 'Free From' products but helpfully group them together in one section. The big stores also have lists of dairy free products which can be obtained from them, if you ask.

A supermarket Free From aisle

Helpful as this is, the frustrating thing is,that they often major on 'Gluten Free' products some of which (by no means all) are also dairy free, so again you need to check labels. Conversely and confusingly, sometimes products labelled 'Gluten Free' are sometimes also dairy free but do not state it openly. Waitrose gluten free chocolate chip cookies are just one example of this and it's a shame they don't make more of the dairy free labelling, because in my opinion, they're quite scrummy. 


Recently I met a mother whose child, like mine, was dairy free and who expressed her frustration at the restrictions of her child's diet. She just wanted to buy her daughter 'ordinary food'. If you are or have family members who are dairy free, you have probably shared this frustration at some point. The good news is, that there are products out there on the shelves of the supermarkets**. The bad news is that it is a bit like looking for a needle in haystack unless you get some hot tips from someone you know (I can still remember the huge sense of joy I felt, when told by the curate's wife, that Hobnobs were dairy free). 



Use modern technology

The next bit of good news is, that you can get an app for that!! Called 'Food Maestro,' its been made in conjunction with Health Care Professionals, who work with allergies. It doesn't work in all stores yet, but is getting there!


My husband has been my lifeline - he often finds food products, when doing the weekly shop (which, to make life easier, we now do online at Ocado). He originally started doing this to avoid the weekend scrum at the supermarkets and soon discovered he liked the way they laid out their product information. It was through investigating Ocado's website that he discovered my gluten free pasta, which I'm only mentioning here because it is made with chickpeas and is therefore quite handy if you are trying to top up your daily calcium (it's also available from Waitrose, in the fresh pasta section). Of course other stores do similar things with online shopping, you just need to find the one that suits you. 


You can also shop online by using Internet food stores devoted to allergies. I haven't used these personally but have looked at a few and found them quite interesting. They have a wider range than you might find at a supermarket and provide accurate information.  The only thing you might find with these is that delivery charges add to the price of already pricey items - Free From food is already expensive enough as it is! 


You may decide online shopping is not for you and may not have a smartphone on with which to use fancy apps but you can still find product information online, and browse for ideas before you hit the shops. In the past we have used Sainsburys site which seemed to be fairly helpful but I don't generally spend much time browsing for products, unless I'm looking for something specific. Also I get frustrated if I can see something online but not in my local store! 



It's worth shopping around 

Someone made me laugh the other week by pointing out that my husband*** works for one major supermarket, but that we shop elsewhere - at Ocado and Waitrose. This is not entirely true - living in an area where I have quite good access to a number of different supermarkets, I hop around the different shops according to where I happen to be that day or according to which Free From products I want, as the supermarkets all vary slightly in what they have to offer. Prices can vary too, as I found out last week, when I visited the Co-op and found that my favourite brand of Free From bread and my Free From Jaffa cakes are currently cheaper at the Co-op than at either Sainsburys or Tescos! 


I also still pop in to independent health food shops from time to time. They might be a bit pricier than the supermarkets but they quite often have products that you can't find elsewhere (except maybe the allergy food shops online). Where else can you find a dairy substitute made from pea protein? And they tend to offer their customer a bit more of a personal touch than supermarkets too. Who else might offer to order in something that they don't have in stock, but will offer to order it anyway, because they can get hold of it and they know you want it - like those Free From ice cream cones I wanted, last summer? Yes! These days you can get dairy free ice cream! Mmm! Sounds like a cue for another blog!




*Watch out for 'lactose free' on labels - this does not necessarily mean 'dairy free'!

**The bad news is that if you are really sensitive to milk, a lot of these products may not be suitable for you. Even if they do not contain milk in the ingredients, they may still contain 'traces of milk'. This is because they have other products made on the same production line that are made with dairy - in which case they cannot guarantee 100% that a tiny amount of dairy might not enter the one you're after. 


NB Something else to look out for - if something is suitable for Vegans then it may also be dairy free. Although some products that say they are Vegan still say 'may contain milk'. The only way to be sure is to (yep, you've got it) check the label carefully everytime.

*** The Hub no longer works for any supermarket - just in case you're wondering!

Anyone for coffee and cake?

I don't know about you, but when I go out shopping, the trip doesn't seem complete without a bit of a pit-stop somewhere along the line. I think the habit began, when I was a teenager and my Mum started taking me and my sisters to the odd cafe for a sneaky tea and cake. I don't always indulge, but from time to time, the urge to have a coffee with a bit of cake on the side, just steers me in the direction of a cafe. 

It was one of the things I was so looking forward to, when I went on maternity leave. Problem was, my maternity leave had no sooner started than it finished when I was admitted to hospital with HELP syndrome, and ended up giving birth far earlier than I had originally thought. Oh well! I thought, as I lay in hospital, I'll just make up for it once baby has arrived. 

Of course it didn't work out that way as before long we found out that our baby had an allergy to cow's milk. As the realisation began to sink in (of what that meant for me, if I continued breastfeeding) I thought what can you do and where can you go when you're dairy free?

The answer to that, of course (if like me you've tried going out for coffee and cake) is not a lot, sadly. Finding a black coffee, if you can't tolerate soya, you can do almost anywhere. Finding cake to go along with it, is something else! If Baby is asleep my options are wider as she can now tolerate it if I have something with a little milk in it, like a biscuit or small cake, but if she's awake - no chance - she wants what I've got!  In the interests of complete self- interest, this is what I have found so far:

The Big Three!   (near me anyway)

Costa

Soya milk - yes

Cold drinks also available.

Dairy free cake - yes! Last Christmas Costas made my day, when I realised that they sold a slice of Christmas cake which was dairy and gluten free!! What's more I thought it was great. If I was being really picky, maybe it was a teensy bit dry, but you tend to get that with gluten free cakes anyway. 

Alternatively, they now offer a packet containing two mini Cherry Bakewell Tarts (which Baby LOVES!) The packet says 'Gluten Free' on the front, but the back of the packet confidently states that they are also wheat and dairy free.

Costa now also sell gingerbread biscuits that are dairy free (not gluten free). They're quite big, for a little person, though!

Anything else you can eat?  - plain crisps and fruit. I couldn't find any nutritional information available on their website. It's a shame, because when you rush in, you don't have time to stand there and read all the labels and, in my experience, you can't rely on the staff to possess detailed knowledge about the food they sell. 

Starbucks

Soya milk - yes

Cold drinks also available.

Dairy free cake - NO, not anymore! They used to sell a chocolate and hazelnut loaf. I thought it was OK, if a bit dry, but maybe I'm just desperate for a bit of cake!! But the only problem was that it often sold out. Now the only problem is that is has disappeared completely!! There is no dairy and soya free cake at Starbucks, at all!!

Anything else you can eat? The answer is, not much if you're really hungry. There is a Vegan gluten free wrap, but it's usually filled filled legumes I avoid, because of intolerance. A friend of mine asks for the fruit loaf, without the butter and you can ask for soya milk with your porridge. Starbucks website says they do a bacon butty. They do have what looks like a very comprehensive chart on their website which covers various things, including dairy, but sadly a lot of the dairy column is filled with N for no! If you do take a look at the chart, I'm not sure if it's still there, but watch out for a sandwich listed as dairy free - it contains cheese! Please beware if you have the bacon butty - if it's heated on the same grill as everything else, there is every chance of cross-contamination occurring!!

Cafe Nero

Soya milk - yes

Cold drinks also available.

Dairy free cake - Yes! - although if you're gluten free, there is now the option of an OK raspberry, coconut slice. 

Anything else you can eat? - fruit, plain crisps and more recently, I spotted some sweet and salty popcorn. Nero do have additional nutritional information online, but you have to research product by product - which is very time consuming. 

Is there anywhere else you can go? 

This isn't an exhaustive list, by any means, so if you have any other suggestions, we can add to it.

Sainsbury's

Near us there's a large Sainsbury's. I was pleasantly surprised to discover that they have decided to stock two Free From nibbles - a chocolate brownie and an almond biscuit! The almond biscuit is obviously a replacement for the mince pies that they stocked around Christmas. 

Sainsbury's  cafe also has a folder for staff, full of nutritional information. I found that if you ask, they will show it to you. They can't guarantee that any of the food they sell is dairy free unless it is in Free From packaging. If your dairy intolerance is not very severe, you might be OK with some of their food, as long as it doesn't list dairy products on the ingredients list in their folder. However, it is always a calculated risk, as none of their food is produced in a strictly dairy free environment.

Bebo

A small local, independent cafe. They have just two cafes in the UK - Welwyn Garden City and Birmingham. They sell a wide range of drinks and offer soya milk as well. It's basically a sandwich bar and food on the menu is made to order, so there is some lee way about what you can request, when you make your order.

The one near us has a really nice ambience and the staff are helpful, although not always all that knowledgeable. They are beginning to recognise the importance of food allergies - apparently, my coeliac friend approached the manager there, when the shop opened and asked him what he was going to do for Welwyn Garden City. He responded by supplying gluten free cake and has gone on from there to offer gluten free bread as well. Some of their cakes are meant to be dairy free as well, according to one staff member I spoke to, he just couldn't remember which!!  

Summing up!

So the answer to my earlier question is that the main players (near me) are pretty similar, but there are some differences. I think that it just goes to show that both independent cafes and big chains can be open to new ideas, they just might need to be approached to realise we're out there! I mean to go back to Bebo and Starbucks to ask about dairy free products again, because I believe that if you don't ask, you don't get!

There are dairy free alternatives, but it's certainly not butter!

You may be familiar with the advertising slogan for a current alternative to butter: 'I can't believe it's not butter'. Unfortunately, I don't think there's a true alternative to butter in dairy free land. It's very difficult to replicate the true flavour of dairy products. However, I have found a spread that replaces margarine quite nicely. The one I use is produced by Pure dairy free. They have produced three different versions: Soya, Sunflower and Olive, all of which are are associated with certain health benefits. Their website provides more information and some helpful recipes to try, but here are a few of my personal thoughts about their products:

Soya

The soya version isn't any use to me, due to my problems with soya. I did try a bit, to see if my body would cope with it (it didn't), and it seemed to taste OK. It is the spread of choice for supermarkets - if they only have room for one dairy free margarine, they seem to stock this version, by default - which is rather annoying for those of us who need to avoid soya!

Olive

The Olive version is alright, but I thought it produced slightly greasier results, when baking. 

Sunflower

My favourite version is sunflower, which I have found to be very versatile - good on bread and toast, I've also used it for making scrambled egg and cakes, with excellent results. I have to admit, I thought that it might have some unpleasant after taste, but I haven't noticed any. The other good thing about sunflower is that it contains vitamin D, which your body needs to absorb calcium.

Update
Since I wrote this post other dairy free margarines (usually made with sunflower) have seemingly sprung out of the woodwork! Vitalite's version is available in many places, Sainsbury's also sell one called 'Tomor' in the Kosher section of their chiller cabinets and most supermarkets now seem to be producing their own dairy free brand - from M&S to Aldi! Now we have choice!!

Update 2015:
Look out also for Koko's new margarine, which is coconut based. It is currently sold via Waitrose.

Here's what to look out for!

Update 2016:

Now Flora have entered the dairy free fray by bringing out their own dairy free version. Watch out though, as the packaging is very similar to it's Original margarine! I also hear that its made on the same lines as other products containing milk, so if you're really sensitive to dairy, it may be best to avoid!

There are alternatives - dairy free milk substitutes

So you can't have milk, but you might still want your morning breakfast cereal or something with your cuppa. Well there's no need for complete despair, there are alternatives! 

One of the main things to consider is the age of the individual involved. Some milk substitutes aren't suitable before the age of six months, two, three or even four years, so you need to read your labels carefully. 

Baby's choice:1+ by Alpro

You might also want to bear in mind whether your milk substitute needs to be enriched with certain vitamins. If, for example, you want your milk substitute to perform the same kind of role that normal milk would previously have carried out for you (by providing a considerable amount of your daily calcium allowance) you need to check the label. Most do, but organic versions won't, because they cannot call themselves organic, if they have added anything into the mix. 

Some also have vitamin D added. It is vital for your body to get enough vitamin D, in order to absorb calcium, so it could be worthwhile to make sure your milk substitute contains vitamin D as well. Some also have B vitamins, and so it goes on...


The good news is that there are all kinds of milk substitutes these days. The problem is that the choice could be bewildering, so let's take a look at the options:

Soya Milk

Perhaps most widely known and available - often offered in coffee shops etc. no good, however, if, like me, you have an intolerance to soya milk. Many people who can't have milk also have problems with soya. There is also some question mark over the use of soya by those who are pregnant or infants - soya contains a plant form of oestrogen, which it is thought might cause some kind of hormonal effect. More worrying for boys than girls apparently, but there nonetheless.

There are other associated risks, but reading around, it's tricky sorting out the fact from (quite frankly) the fanciful. The following article, from the BDA, is quite a helpful read.

One thing that does seem to be agreed upon, is that soya is not deemed suitable for children under the age of six months. Alpro produce a junior version (suitable from one year) that we now use for 'Baby'. This is the medical profession's preferred option for young children under the age of two, unless they are intolerant/allergic to soya. This is because it has the right amount of calories and additional vitamins, that are needed by very young children.

One of the major advantages of soya, however, has to be, that (as it has been around so long, as a useful milk substitute) manufacturers have found ways of developing yoghurts, cheeses etc. made with soya. You can also get it in various flavours and in smaller cartons, which are good for carrying around. So if you can tolerate soya, and don't depend too much on it, it could be a good option.

Rice Milk

Personally I think rice milk has a nasty after taste. It is a popular alternative but not considered suitable for children below the age of four and a half (and therefore not suitable for those who are breastfeeding either). This is due to the fact that rice contains a certain level of arsenic!! The arsenic comes from the soil in which the rice is grown. Yet somehow rice is generally widely consumed and is still considered safe as a first food for babies!! Read this article by the Food Standards Agency, for official advice. And then the following article, by Foodsmatter, for a more interesting read!

For those who can have rice milk, as well as the larger cartons, it also comes in handy smaller lunchbox-sized versions, which are good for travelling. They also come in variety of flavours.

Almond Milk

One alternative that is becoming more and more popular, is almond milk. I really like almond milk. Almond is a good natural source of calcium, so it makes good sense. It's also an excellent source of vitamin E. The good news, for nut allergy sufferers, is that almonds are not nuts - they're drupes and are related to the peach!

Ecomil, Blue Diamond, Alpro, Dairy Free Dream, and Rude Health all make their own versions of almond milk, but Ecomil's, being organic will not have any extra vitamins beyond those which are naturally present in the almond itself because you can't add vitamins to an organic drink - it immediately invalidates its organic nature). Rude Health's version will not be suitable for anyone avoiding rice milk (see section below), as it contains 14% rice milk. This isn't a huge amount, so you might regard it as okay, but that's entirely up to you!

Alpro's advice (aimed at those of us who have young 'uns) is that Almond milk is not suitable as a main milk drink for children under three, but can be used in cooking etc. Additionally, they state (unless they're organic, of course), that all Alpro milks contain vitamins B2, B12, and D as well as calcium.

Hazelnut Milk
Hazelnut milk has quite a distinctive nutty flavour. I like it in porridge, as it adds a kind of creaminess, which is missing in almond milk. Alpro is the brand leader in this one. Rice Dream also make a hazelnut milk, but it's unsuitable for anyone avoiding rice milk as rice milk is blended in with the hazelnut milk. As with almond milk, Alpro state that it is not suitable as a main milk drink for children under three, but can be used in cooking etc. 

Coconut Milk

Chocolate Kara

Made by Kara, it's OK, but I thought it left a slightly powdery taste on my tongue (but maybe that's just me). Kara's coconut milk is quite good used in custard and rice pudding. It's very popular with parents whose children are unable to have rice or soya milk. Kara's coconut milk contains calcium (250ml = 375% of RDA) and now vitamin D as well (it didn't used to). It is apparently cholesterol free. 

Handily, it comes in smaller cartons now, and in three flavours: Original, Chocolate and Strawberry, although the strawberry only comes in the smaller size. The chocolate version makes a very good hot chocolate once warmed!

Hemp Milk

Called 'Good Hemp' and made by Braham and Murray. I know it has lots of fans, but I tried this one once and am not a fan - it has a very distinctive taste. I'm guessing they've successfully removed the narcotic effects of the Hemp, though, as otherwise things could get a wee bit interesting! It's main selling point seems to be that, not only does it apparently contain calcium and vitamin D, it also contains omegas 3 and 6!

Quinoa Milk

Quinoa (keen-wah) is a type of grain. It was used by the Incas to strengthen their warriors, I believe. It's quite a good source of protein and is regarded by some as a sort of 'super food'. Made by Ecomil, we've only used this in making bread, so far!

Oat Milk

Oatly, are the brand leaders with this one, although there are now more oat drinks on the market. It was my personal favourite before my intolerance problems really began. Now that I can't tolerate gluten, this one is out for me - as it's not made with gluten free oats, which is a shame. 

It's not suitable for children under the age of two, as a main milk drink (unless advised otherwise by your dietitian), but can be used in cooking. I didn't get any nasty after-taste from it, but you do need to shake the carton really well before use as the mixture can separate. You can get a chocolate version (which isn't too bad) and they also do an Oatley cream substitute which is not unpleasant either (it's fairly thick, but thins somewhat, when it comes into contact with warm food).

In case you're wondering...
Goats milk and sheep milk are two substitutes to cow's milk that we've not tried - although people often bring these up in conversation, once they realise you have a problem with cow's milk! The reason that we haven't is because both of these contain proteins that are very similar to those found in cow's milk, so we're not going there! 

I have a friend who did rear her children on goat's milk (you can get it as a powdered formula in a tin from some supermarkets and good health food shops, it's called 'Nanny Care'), but I'm not prepared to take the risk of a bad reaction. Camel's milk and mare's milk are apparently much less allergenic, but I don't know about you, I've certainly not seen them on sale in any supermarket, just yet!


If you're from the States...
For the Americans among us, a comprehensive breakdown of milk substitutes available in the US, has been produced by the American nutritionist, Heather Bauer.


At the end of the day (having considered the options) whichever milk substitutes you end up trying, I hope you find one that you can enjoy with your cuppa and/or cereal!! 


And please... let me know how you get on!

More posts about milk substitutes can be found on our blog, under the heading 'Dairy Substitutes' which also covers yoghurt, cream and cheese!

Breastfeeding a baby with cow's milk allergy means no more milk for me!

So, decision made! 

A bit daunted, I decided to breastfeed baby. 

Knowing what I do now, I sometimes wonder whether (faced with the same situation) I would do it all again, but knowing me, I probably would. I don't always make things easy for myself, but if I believe in something then I follow it through - to the extent that two years down the line, I'm still breastfeeding my rather bigger 'Baby'!* 

Excluding milk

The paediatrician, whose interest just happened to be in food allergies, was a bit sketchy about what I should do but did advise excluding absolutely ALL forms of cow's milk from my diet - which meant reading ALL labels on ALL food products and medication ( I remind my GP, each time I'm offered a prescription). He also recommended (as I was  unable to have soya milk) using Oatley as a milk substitute but warned against using rice milk - more of which another time.

Fortunately for me, my mother happens to be acquainted with a retired dietician who used to work with a Doctor who specialised in allergies. This acquaintance passed on some important information - chief of which, was was that milk is an important source of calcium in our diets, so if I was going to go dairy free, it was essential to take a good calcium supplement along with vitamin D (vitamin D helps your body absorb the calcium). 

The other key information related to the different guises that milk comes in on food labelling - milk powder, cream, yoghurt, butter, fromage frais, buttermilk and cheese are perhaps pretty obvious, whey and curds, yeah I remember learning about cheese at school, lactose also made sense, but casein? That was a new one on me! 


The practicalities

There was so much to absorb about this new dairy free existence and it hasn't been easy. Life is a lot less spontaneous! I soon became acutely aware of how much eating is a core activity in the day - my days have had to be planned around what, when and where we will eat. 

So I have had to cook a lot more - ready meals are not so easily available. This is a good thing (I tell myself) because it is a lot more healthy, BUT it is a lot more time-consuming! It has certainly meant brushing-up my cooking skills. I've also had to adjust the way I cook - so many recipes use milk and sometimes there are no easy substitutes - especially, if, like me, you can't have soya.

We have found that although it's getting better, many cafes and restaurants have no idea about how to provide for even the most common food allergies, such as dairy (and now gluten, with me, too) even if they say they do, so, going out always means taking food with you - just in case. 

Because eating out in restaurants can be tricky, it has affected days out, social occasions, family get-togethers and even where we go on holiday. 

Shopping is not so easy these days, either. Most supermarkets have 'Free From' sections, but you can't buy all your food there, so all food labels need to be examined very carefully. Particularly as with our baby we've discovered we need to check for the slightest traces of milk. 

This is a particularly good Free From aisle. Unfortunately many stores don't stock this much choice.

One thing I have discovered is that 'may contain traces of milk' can depend on how the product is manufactured and even what batch. Others with cow's milk allergy might not be so sensitive, BUT following the occasions where this has caused problems, we no longer like to take the chance. As baby has a delayed reaction, it's not life-threatening, but it causes her a great deal of pain - not something we like to inflict on our little one, unnecessarily!

And, as I'm now milk and soya free, I find myself going on shopping expeditions in all kinds of different places, just to track down milk and soya free substitutes that can't commonly be found in supermarkets. These are often more expensive!! And tracking these products down can be very time-consuming!! Thank goodness for the Internet and online shopping is all I can say!!

If you can have soya, lucky you!! Soya substitutes are pretty good - most forms of dairy can be substituted pretty well, with soya and soya substitutes can be found everywhere - including many restaurants and cafes!

Soya substitutes, like these, are quite common

The sacrifices

It hasn't been easy having to sacrifice things that I loved. I've missed my lattes, cheese, cakes, puddings etc. etc. especially in the early days. There are times when I have felt quite jealous of everyone else eating 'normally' and even a little bit... well... angry? But then I remind myself that it was my decision to carry on breastfeeding my baby, no-one made me, and there is still so much more food that, thankfully, I can still enjoy or could - until I had a tummy bug and became intolerant to wheat (among other things) but that's a whole different story.


The joys

Along with the sacrifice there are some joys that should be mentioned. No claims that I feel healthier or have lost weight on a dairy free diet, however, my baby is healthier and thriving. That to me, is priceless, and on a more practical note although we initially had problems with breastfeeding and it has meant an awful lot of sitting down, it's quite handy and convenient! No more washing and sterilising etc. etc. (anything for less work, me) and it's with you wherever you go and isn't another thing to shove in your already overburdened change bag!!


Summing up

Time on, I must admit, I still miss those leisurely lattes I envisaged myself having once baby was born, but not so much these days - I now enjoy my black coffee and I can still have chocolate - there's a lot more dairy free chocolate out there, these days! All I know is that I did what I felt I had to do, and my baby is a healthy, happy and thriving little girl - which makes it all worthwhile.


*This is by no means what I originally intended - it came about partly because she still can't tolerate cow's milk protein but still needs calcium in her diet. The other reason is that I have an intolerance to soya milk - a common cow's milk substitute. Some people with cow's milk protein allergy have been known to also be unable to tolerate soya, so I have hung back a bit from introducing her to soya, until fairly recently. 

Further Reading:

Cow's Milk Free Diet for Breastfeeding Mums (Norfolk NHS)

After the diagnosis... breast or bottle?

Choices, choices...

Following the diagnosis, it became clear that I had two choices: continue breastfeeding and completely exclude dairy from my diet or switch to bottle feeding my baby, using a special formula. 

Formula?

The definite advantage of using formula is that as the cow's milk protein passes through the mother's milk, the baby's mother doesn't have to give up dairy herself. The formula which we were prescribed, Nutramigen, comes in small tubs and needs to be prescribed by a doctor. At roughly £25 a tub, it's just as well that it comes on prescription as it's not a cheap option by any means! I had one (locum) doctor ask me roughly how many tubs I needed, as it was so expensive!! 

One disadvantage of Nutramigen is the nasty smell, which emanates both from the formula and baby. Another disadvantage is the rather distinctive taste. I haven't tried it myself but it apparently doesn't taste that nice. I used it to make baby rice and baby cereal (having used it as a top-up when my baby was tiny) however, after a short while, my baby refused to eat it any more. When I discussed this with the dietician, she said it was because babies are predisposed to like sweet things (it's a survival instinct, because poisonous things tend to taste bitter) and the formula was a bit bitter. This tends to kick in around six months and might explain why one mother I spoke to said that she had quite a battle to get her child accustomed to the formula, when she tried weaning her onto it.

Breastfeeding?

The advantages of breastfeeding are spelled out everywhere these days, but the obvious disadvantage of breastfeeding a cow's milk protein allergic infant is that the baby's mother has to exclude milk completely from her diet - not an easy option, if like me you love lattes, cheese and cakes. Although actually when you look really carefully at food labels, there's an awful lot more ordinary everyday things that you used to take for granted that you can't eat, like chicken gravy.

My Personal Choice...

Let me stress that this bit of my blog is completely biased - it's about my choice.  It's not something I would push on another person - each to his/her own. I think I would have found this option a lot more tricky, if I had a bigger family to consider or if I had gone back to work. Fortunately for me, there are just the three of us and my husband was happy to go with whichever path I chose.

It soon became clear that breastfeeding was not going to be an easy option, but it was the right one for me, because although I loved milk and would have to cut it out, I saw this as having a short term impact on my life - according to the paediatrician most children grow out of the intolerance by the age of two and I wasn't intending to breast feed my baby that long! Meanwhile, I would be feeding my baby all the nutrients she needed through my milk and providing her with vital immunity. Also, breastfeeding is meant to help prevent food allergies and I certainly didn't want any more to deal with! 

In the end I actually chose a third way - I  combined breastfeeding and formula for a while, as although I wanted to breast feed I was very sore, so I opted to breastfeed from the least sore side, express from the other and top up with formula, until I had healed up enough (my aim was to drop bottle feeding and drive my milk supply back up, once I was better). Thankfully this didn't take too long and I was glad to drop the formula, at least until weaning time, as it was manufactured and therefore (in my humble opinion) second best! 

Actually, knowing what I do now, maybe if I had my time again I might choose differently and be less hard on myself, but who knows?

An article that might be helpful, if you choose to use formula, is this one by Nutramigen:
From diagnosis to weaning