Trying to understand why your baby is crying is difficult enough but if you find out it might be something to do with what they, or you, are eating adds a whole new level. Today’s guest post is from Cat who discovered her little girl Lara had a cows milk protein intolerance which was aggravated in the early months by the dairy Cat had whilst breastfeeding.
I held my breath as the nurse plunged a needle into Lara’s tiny arm, delivering her first batch of immunisations. As the screaming began I grew aware of the nurse looking at me quizzically.
“You’re handling this very well,” she said. “Most first time mothers can’t stand hearing a pain cry.”
I laughed it off but was flooded with a mix of confusion and relief. I had suspected for some time that everything was not as it should be. This cry was the same cry that I had grown used to hearing every day and night since Lara was born.
What I didn’t know then was that Lara had an intolerance to cow’s milk protein.
The signs were there. Alongside the screaming there was an aura of general unsettledness. Lara was very sicky and the smell of her farts rivalled any grown man’s. She would go for a fortnight without pooing and seemed to have constant stomach pain.
It had always been our long term plan to combi-feed so, when Lara was five weeks old, we decided to give her her first bottle of formula milk. In the morning I awoke to some strange noises. Lara was vomiting blood.
“Probably just caused by the trauma of vomiting,” the GP deduced after a degree of prodding and poking.
He was pleased that she was otherwise gaining weight and sleeping well. He dismissed her other symptoms as a touch of colic which she would grow out of.
At nine weeks post-partum, I signed up to Slimming World. I knew the eating plan could be adapted for breastfeeding mothers; you just got to eat more milk and cheese. Result! but within days Lara’s screaming was even more frequent and her poisonous smelling farts could have been bottled and sold as pest control.
Several people suggested a food intolerance, but apart from a smidge of eczema, there had never been a swelling or rash.
But the idea stuck. After all, hadn’t everything got worse since I increased my dairy intake?
The GP was unsympathetic, adamant that nothing I ate could transfer through my breast milk to affect my daughter. I demanded a second opinion and a second GP was brought in. As I sat there, close to tears, they diagnosed me with post natal depression.
“But I’m not depressed!” I wanted to scream. “My little girl is the one who isn’t happy, I’m just frustrated.” But I just sat there numbly, while they discussed suitable tablets.
“We need to make sure it is safe to take while breastfeeding,” they explained. That was enough to shake me out of my stupor. If the contents of a pill could transfer, why couldn’t the food I ate?
I walked out, without taking their prescription, and booked to see a paediatrician.
Three weeks later, as the paediatrician examined Lara, Nick and I nervously told him everything, aware that this was our last shot at a diagnosis.
He instantly agreed with us.
He explained that cow’s milk protein intolerance (also known as CMPI) was, in his opinion, a very under-diagnosed condition; officially 2-4% of babies are diagnosed, but he believed the figure was closer to 25%. But as most babies grow out of it by the age of 1 or 2 many cases are undiagnosed.
I was told to give up dairy, to see if we could prove an intolerance that way, rather than submitting Lara to blood tests. The daily bottle we were giving was swapped for a CMPI formula milk.
Within days Lara was a different baby. The pain cries stopped, the constipation and poisonous farts stopped and the eczema incredibly cleared up! Never mind that I couldn’t eat any of my favourite foods, she was actually happy!
The hard test came a few weeks later. To truly diagnose the intolerance I needed to eat some dairy and prove a reaction. I have never been as relieved to smell farts and hear screams as I was 24 hours after my swansong camembert.
Now, at 20 months old, Lara is one of the happiest toddlers I know. She still cannot eat uncooked cheese or milk, but can tolerate cooked cheese, yoghurts and chocolate. With a little brother due in the next few months I’m gearing up to come off dairy again as there is a strong likelihood he will have similar reactions.
Since Lara’s diagnosis I’ve met lots of people in similar boats and it has made me realise just how common these allergies are and also how hard many people have to fight to get a diagnosis.
Has anyone else had experiences of intolerances in babies and how did you cope?
I’ve had a similar experience little boy, Oscar who is almost eight months and has the exact same intolerance. We fought hard for a diagnosis and essentially spent the first couple of months of his life back and forth from the hospital and GPS. We ended up in A&E a few times too as during the early weeks it really affected his breathing, but time and time again it was dismissed as colic, that he was just hungry, or even worse… that I was being over sensitive as a first time mum.
I found it incredibly hard ~ I wanted Oscar to feel better but I was helpless. It was also suggested to me that I may have had post-natal depression, but I knew that wasn’t the case ~ I just wanted to be taken seriously and listened to.
Finally we managed to get our diagnosis ~ it was this particular website that I found helpful in getting it: http://www.cowsmilkallergy.co.uk/home/?gclid=CMuz5uaSo9ICFW-x7Qodi64EDA.
For various reasons Oscar ended up on a special formula, not breast fed and I can honestly say we’ve not looked back. In a couple of months we’ll be starting him on the milk ladder to see if his intolerance has improved ~ which I’m really hoping it has. We were advised that many babies decelop an intolerance if they are on antibiotics st birth ~ Oscar spent 5 days on them due to be spiking a temperature in labour, so hopefully, he will grow out of it soon!
“Oh it’s just a bit of colic” AAAAARGH GIVE ME STRENGTH. I hope you find Oscar’s tolerance has increased, Katie
So sorry to hear about your experience but glad you finally got the diagnosis. xx
Oh Katie, its so tough isn’t it? I absolutely recognise that feeling of helplessness. Good luck with the milk ladder, it has been a long and slow process for us as every step or two up has resulted in a step back, but we are gradually getting there x
Wow talk about flashback. I too remember the immunisations as almost verification that my baby “wasn’t right”. If anything, it was oddly refreshing to hear her familiar bloodcurdling screams but for once know what was causing them. I suspected CMPI and went through a phase of eliminating dairy from my diet (if life at the time wasn’t wretched enough ?). It seemed to help a bit but we didn’t have the miraculous transformation you describe. Turns out our issue was reflux.
I’d felt dismissed by midwives and HVs as a naïve new Mum who was overplaying her fussy baby. Fortunately for me I had seen my sister go through reflux diagnosis and treatment with my niece so I knew what to look for and pushed for a solution.
As your paediatrician said, this intolerance is widespread and yet so few HCPs recognise it. Ditto reflux. New mothers are left floundering around on their own trying to find information and support and I’m sure it’s not uncommon to then be misdiagnosed with PND when it’s a simple case of just wanting to make your baby better.
I hope your post brings a lightbulb moment to anyone in that awful situation and more families are able to bring relief to their suffering babies.
I remember my sister having the most horrific reflux as a baby, absolutely awful and I know it took my mum ages to get her diagnosed. I mainly remember her for her projectile vomiting though. When it’s your 8th birthday party and your cute baby sister covers all your friends with sick the moment they walk through the door then proceeds to scream all through pass the parcel it is no fun at all!xx
Lara was diagnosed with reflux too and given Omeprazole; the paediatrician told us that a baby with an allergy/intolerance will often have reflux, but as you say, reflux can be a standalone condition and is pretty grim to live with!
My son was 4 weeks when he was diagnosed as actually allergic to cows milk. I had difficulty breast feeding for various reasons and at 2 weeks old had to start expressing, but after another week started to introduce a couple of bottles of formula. Cue projectile vommiting after every feed. And then one morning he had a large red patches all over his body. A couple of visits to the GP saw us heading to the children’s a+e at hospital. I had said all along could it be a reaction to the formula but everyone said no. The first dr there said it wS a reaction to a virus. The second and third said it was eczema. The fourth said he didn’t know and would keep us in overnight. That night the nurse witness his vommiting and couldn’t believe it. The fifth dr listened to what I said and how it had all started with the formula and ordered us some special formula to try. Within hours, his rash had gone, he wasn’t being as sick (he ended up having quite bad reflux anyway – we never got away from the sickness and has to change our living room carpet at 18 months!!) He had a blood test which confirmed the allergy (horrendous!).
Ever since then I have stuck to my guns about my intuitions when he is unwell or something is up. I strongly believe mother knows best.
when he turned 1 we were allowed to start introducing dairy again – there is a 12 step ‘milk ladder’. He tolerated most things and now at age 2 he has everything apart from uncooked cheese (I think he just doesn’t like the taste) and actual milk (we give him a fortified kids soya milk). He does have cows milk occasionally but it seems to bring out eczema patches on his cheeks.
Weaning was difficult, but the amount of dairy free products has grown massively even in the last 18 months since we started and it’s just extra checking on labels, milk is in the strangest of things sometimes!!
Funnily enough in my first few months of pregnancy I just could not face any milk, yoghurt, cheese, cream. It made me feel so sick. I’ve always wondered if there was a link? Would be interesting to hear of anyone else had the same!
Claire I had the same and have always wondered about a link! I had hyperemesis so pretty much everything made me pukey, but any dairy was especially bad and my daughter was diagnosed with cows milk protein allergy
Dairy certainly creeps into some random things! The looks I was given when I asked people if the gravy they were serving had milk in it were priceless!
In my current pregnancy I definitely avoided dairy in the first trimester, the thought of it made me feel sick. I’m not sure if this was a subconscious placebo though, as I wasn’t like that at all with Lara.
I’m going through this at the moment. My son had no problems but my first daughter had really bad reflux bad eczema and just something wasn’t right. The doctors would only prescribe baby gaviscon which made everything worse. I ended up cutting dairy out and breastfeeding exclusively till she was 15 months. With trial and error soya came out my diet too and at 2.5 she is still dairy and soya intolerant. We can’t get past the 1st step of the ladder.
My second daughter was born 15 weeks ago and I cut dairy out when I was still in hospital as she was being so sick even the midwives were alarmed. Her reflux is still really bad and she’s labelled failure to thrive which is heartbreaking. we’ve tried gaviscon and ranitidine neither which worked and they won’t prescribe the next one up. We have spent countless times at the doctor and she had breastfeeding jaundice till 13 weeks so we’ve been in and out of hospital and she’s had far too much blood taken from her which is awful. I’m thinking she is also soya intolerant as even though I haven’t had any direct soya in sense of milk / yogurt etc she’s still reacting. I also think she’s egg intolerant. The only problem is I feel like I’m going mad and everyone thinks I make it up but she sounds seriously snuffly at night if I eat something won’t settle and has stinking farts and nappies full of mucous it’s revolting.
I’ve booked a private paediatrician appointment for this weekend. He’s supposed to be an allergy specialist and I’m hoping he will help.
I think what I find hardest is the lack of knowledge one of the reasons I believe my elder daughter still can’t tolerate milk or soya is because helpful family members think it’s rubbish and that I’m making it worse by not giving it her. I love my mother in law but every mistake we’ve had so far is because she’s given her something with milk in. ‘It’s just a tiny bit’ or ‘she wanted it’ or ‘I didn’t see milk in the ingredients’. I understand mistakes happen but it’s awful as consequences are horrible to watch so I just wish they’d take it seriously because it is real.
Sorry for brain dump. I had 2 Oreo biscuits yesterday and got exactly 2hrs sleep last night as baby was up all night crying, farting and generally being miserable. They have soya in. ??
Oh Karena, you poor thing. You’re absolutely not alone, but I also got the feeling that some family and friends thought I was over-reacting, which just made it harder. That, and trying to explain to people that it isn’t the same as lactose intolerance…
In our case, I think it was easier for people to think I was loopy, as Lara tended to react 24-48 hours after eating something; if there had been an obvious immediate reaction it might have been easier.
I can only echo what others have said; stick to your guns, mother knows best.
I understand that children with a dairy allergy often react to soya too; we were advised to stay away from both. It’s so hard when you need a biscuit or some cake though!
I found several vegan recipes online for chocolate cake which were fairly easy to make and kept me going and I became a bit of a pro at scouring the free from aisles in the supermarkets.
Don’t even get me started on why baby gaviscon is prescribed for breastfeeding mums…..
Regarding the reflux ~ push to be given Lanzoprazole, GPs won’t prescribe it but we requested to be referred to our local children’s observation unit where the paediatrician was able to prescribe it. It worked wonders for us!
Sorry I forgot to add ~ that was after trying both gaviscon and ranitidine!
My daughter was diagnosed with a cows milk protein allergy, again after months of me suspecting it and asking two health visitors and being told it was so very unlikely in breastfed babies. So having been told it wasn’t that, around 4 months we began to try and introduce the odd bottle of formula. She would really resist the bottle spitting the milk everywhere (despite previously having expressed milk no problem) and scream for ages afterwards. Also had eczema. It was summertime so one hot day she was in a nappy, she spat the milk out into her tummy and instantly broke out in hives. I called the GP and insisted they see her that day. Luckily I took a photo of the rash on my phone as the rash went down by the time we had an appointment. The GP luckily was very supportive and instantly prescribed Neocate (which I’ve had can be difficult to get them to do due to cost!) and I went dairy free while we waited for the hospital appointment. I managed dairy free for 2 months while introducing the Neocate but as a vegetarian, I found becoming vegan overnight very difficult, losing weight and I was starving hungry all the time. So when she was 6 months we moved over to the Neocate.
She’s been on oatmilk for the last 6 months-ish, we tried soya at 1 but there was still a reaction. A very timely post for me as she’s just turned 2 and we are still very low on the milk ladder. She tolerated baked milk, but the cooked milk she’s still reacting too and breaking out in rashes, as recently as yesterday, cue screaming crying toddler. Call to the dietician today! Does anyone have experience of the allergy continuing beyond 2?
Just on your weight loss point- I’m not vegetarian but I did lose a huge amount of weight, and looked really unwell due to the change in my diet (whilst breastfeeding and having limited sleep a diet change isn’t helpful). It was actually really difficult especially when I got a lot of comments about how skinny was rather than praise for helping my baby!
I went the other way. I think I was so grumpy about not being allowed dairy I was on a mission to taste test all of the dairy free cakes and biscuits! ?
My daughter still has reactions at 2 and a half. We’ve got as far as cheese on the ladder but yoghurt is too far. We will try again in a month or so and see what happens!
This is very familiar. Noah was 4 weeks old when I first went to the GP. Every time he fed he threw it straight back up. He had a lot of wind and seemed very unsettled. Wee were told ‘it’s a laundry issue’. Things only got worse, so we went back, and were told it was reflux. I had to give him gaviscon, but he was breast fed. So I had to mix gaviscon with expressed milk and syringe it in. This didn’t help (and was very stressful). We then tried ranatidine, which also didn’t help. By this point he was around 12 weeks old, and screaming (in what I thought was pain) constantly at night. Whilst my friends babies were starting to do longer stretches of sleep, he was still waking every 30 minutes. I was told to wean him early, and this is where things got even worse. At around 5 months old I gave him a spoon of plain yoghurt, and he was sick for ages and screaming in pain. He wasn’t gaining weight and my effort to introduce a bottle was pointless as it would come up even quicker. He had eczema so bad his skin was bleeding and the Gp just kept giving me stronger and stronger creams. I saw a new GP who finally suggested CMPI. I cut dairy out of my diet and within days it was like I had a new baby. she then told me to cut out soya and within a week he was sleeping 9 hour stretches at night. I actually couldn’t believe it. His eczema went. He started gaining weight. I then had to eat it and see his reaction- predictably horrendous. Noah’s now almost 19 months and had his first cup of milk yesterday, the milk ladder started when he was 1 has been a success.
If only we knew sooner!
I’m so pleased you eventually got a diagnosis Anna and that Noah is doing well! Gaviscon and breastfeeding… eurgh…most stressful thing ever!
I had a very similar problem with my son. He was 3 months old when he started getting symptoms and he was exclusively breast fed. i also struggled to get a diagnoses and in the end I had to bypass my gp and go straight to the hospital consultants. There seems to be limited information available – especially where babies are exclusively breastfed – for some reason it doesn’t seem to be connected that exclusively breastfed babies can suffer from cmpa.
Thanks for sharing this story. It took me a long time to figure out the cause of my second son’s digestive issues and had a very tough first year with him as a result, due to no one taking me seriously. I was determined to breastfeed exclusively and ended up following a very restrictive diet (dairy and soy free) that made me miserable. I also discovered (only at 9 months) he had a posterior tongue tie, which I’m convinced is linked in some way, but I’ve had an even harder time convincing anyone else of that! My son is now two and doing much better, but I wish I hadn’t had to do all my own research to get to this point. It’s really important to trust your instinct, even when you feel you’re the only one that believes it!
Totally agree with you on the instinct point Kate. I have friends whose first babies were fine but their second was affected. Really interesting theory about the tongue tie – Lara did not have a tongue tie but I do know several other CMPA babies that were.
This morning I would really like to give all of the commenters a big virtual hug.
Whilst I have been fortunate in this respect I think there’s a lot that troubles me about some of the accounts above – particularly where people have been dismissed as being overly anxious new mums and Cat’s being diagnosed with PND. Being a new mum is hard, and one of the things that makes it hard is when we feel like we are not being listened to, or supported, and I’ve been aware sometimes of the pointed way in which I’m asked if my daughter is my first. (Though sometimes I wonder if that IS me being oversensitive.)
So hugs, and (non-dairy based) cake all round.
Thank you Rebecca x
I am so pleased the RMF team have an article on this albeit for Cat is really one I am sure she would rather not have to write. My son also has a Dairy intolerance and I wish I had known earlier. We had a similar experience in terms of crying and colic. He is still dairy free at 18 months. My son is much happier, eczema is so much better and he doesn’t know any different. There are some great diary free alternatives out there. Thanks for doing this article and raising the awareness as it’s tough as a new parent anyway but this will really help anyone who is unsure.
Great post. My niece and a friend’s little one both had dairy intolerance. Your story seems so familiar with their battle to get it diagnosed and then to start working through the milk ladder. So glad you stood your ground. Why is it that Mums don’t get listened too?! Whilst it’s not directly related on topic I have struggled to get my sons (potential) asthma sorted. I was begging Doctors to listen to me when I said the inhalers weren’t working. And that familiar response that Rebecca K so accurately describes – “is this baby your first”. Argh. Give me strength! I even had one Dr say “Well this dose normally works for other children.” Well, this isn’t other children. This is my child and I’m telling you it’s not working! Finally I got there and the only way I did was to keep pestering them and making them take me seriously. He’s now on medication that work for him and I have a baby that is instantly happier. And I’m a happier Mum who doesn’t feel like she’s hitting her head against a brick wall! Well done to all Mums who keep going and work through these issues! x
I had a similar experience with my daughter. I was constantly told it was colic which resulted in the first few months going past in a haze of sleepless nights and constant bum patting.
We didn’t get anywhere with gp’s or health visitors. Finally, with weaning on the approach and still having concerns at 5 and a half months we were referred to a dietitian. 3 weeks later and no dairy or soya for either of us we had a changed baby.
Now at 2 and a half she can eat most things but not yet ready for yoghurt, cream or milk. I only wish that we had known sooner instead of putting her through that for so long. Next time round I will be looking for signs early on as I want to make the most of those tiny baby moments and I won’t be palmed off with colic.
After all this I don’t think even believe in colic. The GP and HV were both quick to tell me it was “unexplained crying” but I don’t think there can ever be a reason for a baby to cry without something being the matter, especially not the horrific pain cries I heard all the time.
I’m glad you eventually got your diagnosis x
I totally agree Cat
Really interesting post. Good to hear about (if not to live through!). My wee boy had reflux up the age of 8 months (he’s just turned one) and he was a terrible sleeper/crier until then (he’s now a happy-go lucky 13-month old joyous toddler) but sounds like CMPI is even harder to deal with.
So important that new mums are not dismissed and their concerns are taken seriously – inexperience doesn’t mean you don’t understand your baby as you’re the person spending the most time with them!
Have to say as supportive a community this is (and while being completely understanding of what Cat’s been through) I’m a bit troubled by phrases such as ‘loopy’ and some of the comments in relation to PND – something which is a real issue for many new mums and which Rock My Family have published on before (http://rockmyfamily.wpengine.com/the-baby-blues/). Fern’s account really resonated with me and I do think we’d do each other a favour by avoiding this kind of slant which doesn’t help remove the stigma in coming forward.
Hi Nicky, probably a badly thought out term from me there and not intended to offend. I don’t think any of my friends or family thought I had PND – only the GP – but I did get the distinct impression that some people thought I was exaggerating or creating symptoms that did not exist, particularly because Lara’s reactions tend to be delayed (24-48 hours later). I think the GP genuinely thought I was depressed and not coping, so I cannot fault them for trying to do what they thought was right, but in my case I was confident it wasn’t PND; I have friends who have suffered and have seen what they have been through but just knew, deep down, that this wasn’t what I was going through. I hope that provides more context to my comment xx
Hi Cat, thanks for this; its really helpful to know – sorry for being a bit sensitive x
My little boy has just turned 3 and is still on a dairy free diet. He was diagnosed at 3 months with CMPA and a soya allergy, both are non instant which is probably why it took a bit longer to sort out. He also had bad reflux. He was such a poor soul, for the first 3 months he just cried constantly. Honestly if he had been my first I wouldnt of had anymore kids. The amout of times we were at the doctors and a&e with him and rashes all over his body is laughable. It was our health visitor who managed to get us prescriptions for special milk. When he turned 6 months we tried him with soya but he reacted to this so we ended up un hospital for a soya challenge when he was 18months. Thankfully he has now outgrown that allergy which opens up a lot more choice in food for him. We are pretty much stuck on baked milk for him the now. Everytime we try to move up his nappies.are horrendous. Now he is at nursery we are going to try him again and hopefully manage to move up a bit.
In the early days I remember feeling so lost and alone. None of my friends who had babies were going through this and as he got older I always felt a bit put out that no one really understood how serious it was. The amount of chocolate we have received for presents is unbelievable.
I also got asked if I has PND as some people thought I was over exaggerating his symptoms.
I am just catching up on the blog today! So many of these comments and experiences ring true to me! I have now been blocked by gp as a result of pushing for help ! She has told me and the health visitor that I am aggressive and intimidating! More support for mums is needed xx
My little boy was diagnosed with a cow’s milk intolerance from an early age. I’m about to write a post sharing his story. It does get better in time. It can be so hard going through the process though. Great post x
Came across this blog after a very similar experience. I am a first time mum and my baby boy use to scream and cry to an unusual degree in the first few months. The HV kept visiting me as think she thought I was at risk of post natal depression. I kept asking is this normal for a breast fed baby to not go to the toilet for 10 days and have a whole 12 hour build up of crying trumping before a poo. No one had any answers. Whilst waiting to see an NHS paediatrician we paid to go private as he stopped gaining weight at 3 1/2nonths old. Who advised us to cut our diet from my diet. I normally eat a very large amount of diet in my diet and was keeping this up as I thought I would need the calcium whilst breast feeding. I feel awful now! As soon as I cut out dairy gone we’re the eating every 45mins throughout 24hours gone was the massive adult size trumps gone was the pooing every 7/10 days gone was the reflux.no more need for omeprazole. We were advised to early wean at 4months to help with weight gain and they gave us dairy free formula to boost his weight to. Now he is 10months old and I reflex back on those first few months it is really sad to know your new born was is pain discomfort and was very thin. Both me a c my husband have struggled with it emotionally.