Living with a breastfed CMPA baby
As peer supporters on BfS&I, we are often asked by parents about whether dairy allergy (CMPA) is behind their baby’s colic, wind or general grumpiness.
So I thought I’d write a blog about dairy allergy, how it is diagnosed, what it is and what it’s like to live with one, from the point of view of a mummy with a CMPA child.
What is CMPA?
CMPA stands for “cows’ milk protein allergy” and it is the most common infant allergy in the world. However, it’s actually less common than it may seem from talking to people online. If you are concerned that your baby may have CMPA, it’s a very good idea to have a chat with a lactation consultant or breastfeeding specialist to rule out other, more common breastfeeding issues, such as shallow attachment, first.
Current research suggests:
- Formula feeding increases the risk of CMPA
- 2-7% of formula fed infants and 0.5% of exclusively breastfed babies are thought to suffer from the condition
There are two kinds of allergy response to consider:
- ‘IgE allergy’ is what people most commonly identify as an allergy – in its most severe form, it includes anaphylactic shock. Symptoms of IgE allergies include hives, wheezing, swelling and projectile vomiting.
- ‘Non-IgE allergy’ used to be called ‘intolerance’ or ‘CMPI’ (these terms are no longer used). Non-IgE allergies are delayed response allergies, meaning they can occur up to 72 hours after exposure. Symptoms of non-IgE allergies include reflux disease (GORD), eczema and ear infections.
It’s possible for a child to have a combination of IgE and non-IgE symptoms.
The Breastfeeding Network has a great factsheet on CMPA here which talks about the symptoms. https://breastfeedingnetwork.org.uk/wp-content/dibm/cow%27s%20milk%20protein%20allergy%20and%20breastfeeding.pdf
BfN CMPA symptoms list
Is CMPA the same as lactose intolerance?
I want to shout this from the rooftops: CMPA is NOT the same thing as lactose intolerance! (more here) http://kellymom.com/health/baby-health/lactose-intolerance/
Lactose intolerance is common in adults. It is caused by the body not producing enough of the enzyme lactase to digest sugars in milk. Lactase production declines as we get older, and in some adults it declines to a level where digesting lactose becomes a problem.
Babies and infants normally produce plenty of lactase, which would make sense since their diet is entirely milk. Lactose intolerance from birth is a life-threatening and rare metabolic disorder, not an allergy.
How do you diagnose CMPA in a breastfed baby?
When I was confirming whether or not Amy had CMPA I followed the NICE guidelines, which meant removing all milk products from my diet for at least four weeks. An elimination diet like this is considered the best way to confirm allergies in infants. The reason for this is that tests to confirm allergies in babies are unreliable, and they will not identify non-IgE allergies.
I was able to continue to breastfeed while I did this. It’s very rare for a mum to have to stop breastfeeding if CMPA is suspected.
We saw an improvement in Amy’s symptoms within three weeks. After six weeks, I “challenged” to be sure we had an issue with CMPA – this involved simply having a glass of milk and watching for 72 hours to see if Amy’s symptoms returned, which they did.
In cases of children with severe allergies, this process must be managed under the guidance of a health-care team. Amy didn’t have a severe allergy so we could do this at home without supervision – do check with a health-care professional if you are unsure.
Before starting my elimination diet, I had breastfeeding support from an IBCLC and I also talked to a GP.
“What do you mean there’s milk in the pickled onions?” – Living with CMPA
I quickly had to get to grips with checking labels! I’ve found milk in wine, crisps, chorizo, bread and, yes, pickled onions! I soon learned you cannot assume something will be okay
This wine reduced me to tears one Friday. Proof – wine can contain milk! So check the labels on everything.
In the UK we have strict labelling requirements, and common allergens need to be highlighted on the label in bold, which makes things easier for sleep-deprived parents!
Sticking to chain restaurants when eating out made our lives easier too. Big chains tend to take allergies seriously, and often have a special folder or menu for people with allergies. All places which serve food have to be able to tell you (at least verbally) what allergens their food contains. One exciting development is that Zizzi, Pizza Express and Pizza Hut all now offer vegan cheese and have dairy-free pizza bases. Who would have thought you can still go out for pizza and be dairy-free?
Make sure your server is aware you have a milk allergy so they can take extra care not to cross-contaminate food as they prepare it. It is always worth asking, “What’s in that?” rather than just, “What is dairy free?” You don’t know what the person serving you understands as dairy. Many people assume eggs are dairy, so they may be excluding things from the menu unnecessarily; worse, they may assume something isn’t dairy when it is.
I also always make sure I take ‘safe’ snacks or a packed lunch for Amy with me if we are going out now she eats solid foods, and a small pot of alternative milk for me.
May Contains- to eat or not to eat?
One thing which can be confusing when you first go allergen free is the labelling on products like “may contain milk” or “not suitable for milk allergy”.
Now this looks like it isn’t suitable if you are eliminating milk doesn’t it? However, what may be useful to know is that a ‘may contain’ label isn’t a legal requirement. Any food you buy which is pre-prepared, or in a café, or restaurant is a ‘may contain’ even if it doesn’t say this explicitly. If you still prepare dairy foods in your own kitchen this would class as a ‘may contain’! Therefore avoiding ‘may contains’ can make eliminating dairy or other allergens very difficult. The risk of reaction from these products is often so very small many Mums (myself included) decide not to avoid ‘may contains’.
The thing about cheese and chocolate
Good news – there is amazing dairy-free chocolate! Most dark chocolate is dairy-free and many are soya-free too. There are also specialised “free from” chocolates like “Moo Free” and “Booja Booja” (who do the most amazing ice cream too).
I’ve personally found vegan cheese can have a bit of an aftertaste, and if you are going directly from eating proper cheese to ‘chease’ it can be a shock. I found after giving up on cheese for a while I was happier with the vegan stuff.
My favourite options are the pizza cheeses – Violife Pizza Cheese is stocked widely in Holland & Barratt, and another lovely one (which is a bit harder to get your hands on) is Mozzarisella.
The bad news? I unfortunately didn’t lose weight on a dairy-free diet after I discovered the majority of bourbons were dairy free…
Adjusting to your new normal
It can feel overwhelming when you first go dairy free. That’s okay. It’s not selfish to feel fed up about not being able to have cheese or to feel upset because OAT MILK IN YOUR TEA IS NOT THE SAME. I get that. It does get an awful lot easier as time passes.
It helps to seek out ongoing support, either in real life or online. As well as BfS&I, there are some fantastic CMPA-specific breastfeeding support groups on Facebook (https://www.facebook.com/groups/breastfeedingwithallergiesUK/) where you can get recipe ideas and generally have a rant if you need to.
For me, it probably took about six weeks to come to terms with my new diet, and it was all worth it in the end. Amy was a much happier tot! I’m so grateful I was able to breastfeed her. Mummy milk means I have never worried about my daughter’s nutrition or had to deal with tricky prescription formulas and, for me, that all makes it worth giving up cheese.
Written by Paula Rowley.
More information on CMPA
This blog is not intended to replace the advice of a medical professional, simply to give information for further discussion. Please make sure before making significant changes to your diet or your child’s diet to discuss this with a medical professional or a health visitor first.