My youngest daughter, Amalie, who is now three, was diagnosed with coeliac disease at six months old. Well, the consultant is fairly certain that she has it, but she was too poorly for us to give her gluten for more than two weeks so her blood test came back negative. I wrote a couple of blog posts about it if you want to read more (Part 1: One mums worry will my second child have coeliac disease too, Part 2). Both myself and her big sister have coeliac, so it is very likely indeed that she does too.
Now, I don’t know what a normal child’s nappy is like with bringing up two kids with coeliac disease. But I have been a tad concerned about Amalie’s the whole time she has been alive to be honest. I have severe lactose intolerance and so I look out for signs in my children, and these are the signs we have been getting for rather a long while…
She started to avoid drinking milk.
She used to love cheese on toast and pizza – but now won’t touch it.
If she has an extra drink of milk, ice cream or yoghurt in a day – she has diarrhoea.
Sometimes she projectile vomits after milk.
She has a bloated tummy all the time.
As soon as she could talk, she kept saying, “I have got a sore tummy” several times a day.
There are some really horrible nappies after chocolate.
We’re having problems toilet training her for number twos – it’s like she can’t tell us when she needs to go and that it hurts (exactly what happened with my eldest before she was diagnosed with coeliac).
So really, I think we have our answer. Something is going on and it seems to be totally connected to milk or lactose.
Finally, I chatted to my dietitian friend who said that it would be worth doing an elimination diet with her. Obviously, I waited until after Christmas… then after the girls’ birthdays in March… and then, of course after Easter. I realised at that point that a year will have gone by if I don’t just get on with it. At least the chocolate stash had diminished ever so slightly.
Even though I am dairy free myself, I still wanted the proper support and direction from a dietitian so I went to the GP and asked for a referral and waited for the call. I got an appointment in two weeks which I was extremely impressed with. Well done Leeds Teaching Hospitals – I work there and I know how busy everyone is so that is an absolute result. Amalie’s dietitian agreed that we needed to eliminate milk. She advised us to eliminate milk for six weeks and then reintroduce it step by step using the milk ladder.
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On the milk ladder, you start with foods that are most likely to be tolerated for the first week (like biscuits that contain milk), and then build it up each week until you eventually get to milk in its true form. Obviously, because Amalie is also gluten free, most of the suggested food items need to be adapted which might be a little tricky. But I’m sure we can manage it. The dietitian wants to see if she can tolerate any dairy at all and to work out whether it is milk protein or lactose (the sugar in milk) that she is reacting to. She said that because I did not have dairy when I was pregnant or feeding Amalie, it can sometimes lead to difficulties tolerating milk protein.
I trotted off to nursery to let them know the news. They have another six kids that are dairy free, but none that are both gluten and dairy free. They were great though – they already have dairy-free products there and the cook said that she tends to cook Amalie’s gluten-free meal the same as for the dairy free kids. So, with a tiny bit of tweaking, it wasn’t really a problem.
Before we eliminated anything, I had a few little chats with Amalie. Obviously the level of conversation to a three year old is quite basic, but she just said, ‘no I am going to have normal milk!’ each time. So I was really looking forward to the elimination. Eek!
I therefore tried a different technique, saying to her, “you’re going to have Mummy’s special milk, butter and even my chocolate. You’re not going to eat all my special chocolate are you?” I also pointed out anyone else that can’t have milk so it felt fairly normal to her.
When the time came, I put my ridiculously expensive shopping order through – with every different type of dairy-free milk you can get (rice, coconut, soya, almond…) and also free-from yoghurts, rices etc. I wanted to make her feel in control and let her choose what she liked.
We are pretty lucky though, as I can buy products that are nearly the same for both dauguters. Check these out…
They was a real hit with Amalie as she doesn’t feel hard done by at all.
I already have a freezer full of free-from ice creams too, so the hot weather hasn’t caused us any problems. I, of course, always have a sneaky stash of free-from chocolate too.
On the Monday we started, she was really excited. The second tactic well and truly worked. And of course it helps that she sees me drinking ‘special milk’ and eating coconut yoghurt.
She is not loving any of the dairy-free milks as a drink yet, and definitely doesn’t like almond or coconut. But she is starting to drink the rice and soya milk a bit. She loves the free-from yoghurts which is great, but even so, I am still a little worried about her calcium intake. I therefore bought some milkshake powder yesterday and she then drank two cups of soya milk (which is fortified with calcium). Hooray!
Amalie has been an absolute super star. Just like when both my kids went gluten free – I think Mum was doing the most worrying. She just seems to have accepted that she has ‘Mummy’s special milk’ now and continues to be her happy and hilarious little self.
It has been two weeks so far, and I think it is already making a difference. She is doing brilliant with toilet training, had no problems with poos at all and has not said her tummy hurts over the last week either. Nursery said that she has loads of energy and that they think it has really helped. So I guess she may be looking towards living her life gluten and dairy free like Mummy, but at least she will feel well enough to enjoy it and that’s the main thing isn’t it!?