A break from breakfasts – now for the science bit 12

As I have worked my way through 15 breakfast options now, I think it is time to bring a bit of science back to the blog. Don’t worry, the food will be back, but I need to share our latest news, as it may resonate with some of you – and some of you may have comments or advice? Please feel free to comment.

After three years of trying to get Zac allergy tested, we finally made some progress at the end of last year and got a consultant to agree that his condition needed further investigating and blood tests were the next step. The blood was taken just before Christmas and by 21st January – after much chasing, I received the results. Zac’s blood tests were negative for cow’s milk, egg, fish, peanuts, sesame, hazelnuts, cashew nuts, wheat, mixed tree pollen and mixed grass pollen. They were also supposed to test for mango and kiwi, but in the letter they apologised for not having done this, as they had taken insufficient blood! Great.

Dr Fox had also requested for Zac to be screened for HLA DQ2 and DQ8 – which would help rule out Coeliac disease, but there was not mention of this in the letter, so I can only assume they forgot altogether. Massively unimpressed – again. I plan to discuss when we next meet the consultant.

More…

Foods on prescription – anything for dairy intolerants? 3

I know I am a bit late to this debate, but I have been doing a lot of investigating since the ‘furore’ blew up the other week about the cost of foods for Coeliac sufferers.

Like many others, I was so angry, but for more than just the usual reasons. I do not think it is right that these foods should cost the NHS so much – but I believe the problem is with the manufacturers and we cannot blame the sufferers.

I imagine the reason that Coeliac sufferers are granted an allowance is because it is widely acknowledged how ridiculously expensive it is to buy the gluten free products. The impact on the ‘purse’ is staggering. So we should be grateful that this provision is made.

The ‘free bread’ is not widely or recklessly dished out. There is a lot of confusion over intolerance, allergy and autoimmune diseases such as Coeliac. Only the Coeliacs are entitled to an allowance. With certain food intolerances you can be ‘cured’ with desensitisation and that is not the case with Coeliac, so the sufferers face a life of having to buy these foods and it makes sense that they get some help.

Many people have just a mild sensitivity to gluten and wheat and some have a much more severe intolerance, but these people are not entitled to anything. I suppose because there are so many of them and they have a chance of managing their conditions themselves and it is not so detrimental to their general health if they have the odd slip up.

I also imagine that this might be the reason it was so difficult for me to get anyone to test Zac. Less interested doctors probably don’t want to uncover yet another sufferer and put more strain on the NHS purse.

It sounds terrible, but in a way, I was disappointed when his Coeliac blood test came back negative. Not just because it meant we did not get our ‘free foods’ but mostly because it left our questions unanswered. Why was he so ill from eating these foods? What happens next? Should I push for a gut biopsy? Nobody else felt the need to find the answers to these questions, so we were just advised to keep him off his trigger foods as he has an obvious bad reaction and just hope grows out of it. So instead, we regularly meet dietitians to review his case.

At the most recent meeting, the penny dropped and brought up some new questions. Zac’s first intolerance was to dairy, the others came along after. At the very first meeting with a dietitian we discussed his milk and dairy replacements, were given advice but that was all. Every time since, the first thing anyone ever asks is ‘what is his dairy replacement?’ How much does he have each day and they always check his height and weight. The gluten intolerance appears to be of little interest and the whole discussion is about his calcium levels.

The most recent meeting was poignant because this dietitian actually explained why she and the others were more interested in how we cope with his dairy intolerance. It is because it is absolutely crucial that a child as young as Zac is getting the right levels of calcium in his diet, not to mention protein and the all important vitamin D. So why is there no help for the children with dairy intolerance/allergy?

Zac is almost at allergy level – we have been told, based on his reactions. No tests have ever been carried out. He has never shown signs of anaphylaxis but he will be running to the toilet within minutes of eating a crisp that has ‘cows milk protein’ listed as one of the ingredients. His tummy blows up like a balloon and his tummy ache lasts hours.

When he was still in nappies, he would explode out of his nappies and it could take a whole packet of wipes to clean him. It looked like someone had vomited in his nappy and it could be blasted as high as his shoulders and down to his ankles. In fact, he was three before he could be toilet trained because his tummy and brain had no time to ‘talk’. So his sensitivity is extreme and we have been advised to keep him away from all dairy for several years yet with no ‘challenges’ unless advised.

We are always told he could grow out of it. However, at the recent Allergy Show, I got tested and showed up as diary intolerant. It did not surprise me. I stopped drinking milk as a very young child and am almost phobic about it. Just watching someone drink it makes me feel queasy and now I know why. It is not my imagination, it is my memory! It really did make me feel sick. As I dislike dairy so much, I have avoided it for years, so didn’t think about it. But now I know I am still intolerant after almost 35 years of dodging it, I think it is very unlikely that Zac will grow out of it. He is much worse than me and if it hasn’t worked for me, it is unlikely it will work for him.

So what help will we get? Dairy intolerant babies, quite rightly get their dairy free formula on prescription, until they are twelve months, but to my knowledge, there is no provision for dairy intolerant children. Zac was just over twelve months old when he became so ill. I had to fight and fight just to see a dietitian and was given minimal advice. When I met the first paediatrician he congratulated me on keeping Zac so healthy as he has seen so many dairy intolerant children suffering from malnutrition as ‘their mothers are doing it all wrong’. Surely, these people need as much help as the Coeliac people.

An infant needs to consume a huge amount of ‘dairy replacement’ to ensure that they are getting adequate levels of vitamins and calcium. I received little advice on how to achieve this. I worked it out for myself. I have been lucky that Zac actually likes the Alpro Soya Junior milk and loves the yoghurts. It is not unusual for him to eat three a day, which costs a fortune. At the most recent visit the dietitian advised me that the reason he is so well is probably because the yoghurts and milk are so full of everything he needs, it is almost like he is back on formula.

At the moment, there is a great deal of concern and press coverage about vitamin D deficiency, which is widely blamed on our poor climate and poor diet.  Vitamin D is mostly ‘supplied’ via sunlight and dairy products, so for a dairy intolerant infant, surely it is crucial that the parents are given all of the information they need and ideally some help to buy the products! A chronic lack of vitamin D can lead to many serious conditions, e.g. rickets and osteoporosis, and it seems amazing that no-one has yet waved the flag for all the dairy intolerants out there, as a group in dire need of some help.

If anyone needs a bit of extra help buying foods for their ‘intolerant’children, surely it is people like us? The people with Coeliac understand the damage that could be caused to their bodies, if they consume aggravating foods. But not enough people understand the damage done to the body of an infant who does not get adequate calcium and vitamin D. So I am afraid to say, I think the government needs to dig a bit deeper and think about the provision for the dairy intolerant children out there. I realise that there is as much chance of this happening, as there is of Zac ‘growing out’ of his condition, but I would love to get some awareness. Anyone want to help me? 

Revised Rock Cake Recipe 9

As the rock cakes disappeared so quickly yesterday, I have had to make some more today. Tom, Sophia and Zac all wanted them in their packed lunch today, so I guess they are tucking into the last few right now.

Here is the revised recipe, new and improved to make nice big crumbs.

8 oz self raising flour – Doves Farm www.dovesfarm.co.uk make a good wheat free, gluten free flour and it is widely available
4 oz ‘butter’ – we use Pure www.puredairyfree.co.uk sunflower spread, also widely available
4 oz caster sugar
4 oz dried fruit
1 large egg
5-6 teaspoons milk – we use Alpro Soya Junior milk http://www.alpro.com/uk/soya-plain

and the all important Xanthan Gum – 1 teaspoon, and a splash of vanilla extract for extra flavour

I have added a bit more sugar, bit more ‘butter’ and a bit more milk this time, just to ensure we have properly eliminated the dustiness and improve the flavour. The vanilla extract is just down to personal taste. To be honest, I have given measurements but I go more by eye. If the mix looks a bit dry, I just add more liquid and vice versa. When it looks a but runny I add more flour to stick it back together. As I have said many times, I don’t really love baking that much, but I quite like the ‘science’ and common sense of it.

The latest batch has just come out of the oven and I am very pleased. Even better than yesterday. I do feel proud of myself as I am such a reluctant baker and never expect my cakes to be any good. I am also slightly anxious that the children are now going to expect a fresh batch of home made cakes every day when they get in from school! Even more alarming is that while I was clearing up from making the rock cakes, I decided to have a go at chocolate brownies too! What is happening to me!!!!

Milk and me Reply

I have often wondered if I am the reason my children cannot tolerate milk. I am almost phobic about it and haven’t drunk it since I was a five year old milk monitor. I am still haunted by the memory of those lukewarm little bottles and the tiny blue straws we had to poke through the cream encrusted silver tops. If I think too hard about it, I can almost smell it. Just watching someone drinking milk makes my stomach turn. That gross milk moustache and the way it slowly slides back down the glass leaving a cloudy coating.

So needless to say, I didn’t drink any milk during my pregnancies – and possibly didn’t give them immunity? It was hard enough to keep down the foods I love, let alone pluck up the courage to put milk in my fridge. In fact, I was so sick I couldn’t even open my fridge for weeks, so there was no way it way I could bring myself to try it again after over thirty years.

Naturally, I was concerned and asked my midwife. She was not worried and just advised me to be super vigilant about getting the necessary calcium from other food sources. That was all I needed to know, so I didn’t give it another thought. Until the time I started to wean Sophia and she started to throw up every time she had a drink of cow’s milk.

I had a brief chat with the health visitor about it and she said we had no need to worry. Sophia was bottle fed and was fine during that time, a bit colicky in the first three months but nothing out of the ordinary. I was curious as to why ‘neat’ cow’s milk caused a problem, when formula and even baby yoghurts and cheese didn’t. She explained that the formula and other dairy products go through so many different processes that it makes them much easier to tolerate than milk in it’s pure form. Made sense to me, so I just moved Sophia on to growing up milk and toddler milk and latterly soya milk.

Next it was Zac’s turn. There is only 20 months between them, so it seemed that weaning time came round very quickly. I was a bit nervous to introduce cow’s milk again, so was very wary as he approached 12 months, which is when I was told you can try and introduce it on cereals and as a drink.

Zac had also been bottle fed. He was never a particularly settled baby. He used to struggle after night feeds. I could hear him snorting and grunting. I even took him to a cranial osteopath. She explained that a lot of babies have blockages caused by the ‘birth journey’. He arrived very swiftly and she explained he had probably missed out on the ‘hours’ in the birth canal that helps with the shaping! Whatever, but after a few massages, he was finally able to cry proper tears and his head seemed a lot less blocked.

But he was still a fidgety sleeper and had some very unsettled moments after feeds. He always had a lot of dirty nappies. More than I remembered with Sophia. But he was growing well and fine in all other ways, so I didn’t think too much of it. Just put it down to him being a bit less easy going than his sister!

Once he hit six months old and we started weaning, he did change. He was a hungry little chap and loved ‘food’. His formula feeds dropped off very quickly and he appeared to love to eat real food. He would eat anything I put in front of him and I did try and keep his diet as varied as possible. Although bread, pasta, baby yoghurts and cream cheese became firm favourites. Perhaps I let him over eat them. I guess I will never know because by the time he was approaching his first birthday, he contracted swine flu and was very ill.

That is when everything changed and my relationship with milk changed again. The swine flu caused Zac weeks of diarrhoea. As he started to feel better and regained his appetite the foods he seems to crave were bananas, cream cheese sandwiches and yoghurts.

One evening he really seemed hungry and ate a lovely big dinner, followed by a bit of cream cheese on toast, two little yoghurts and some toddler milk. As the evening went on, I noticed his tummy ‘growing’, just before bed it looked like his little pyjama jacket would fly open like something from a cartoon.

He went to sleep ok but an hour later I could hear him crying and got to his room, just in time to witness him bringing up his dinner. He was sick at regular intervals all through the night. Then the next day his tummy was flat again and he was bright as a button.

He didn’t eat much all day, but dinner time he had his appetite back and ate well. That evening he was ill again. It was easy to work it out. He had not had any milk or dairy since the night before and within hours of eating it he was ill again.

The next day I took him to our GP and he agreed it could be lactose intolerance brought on by his illness, a kind of post infective colitis. He congratulated me for spotting it and advised us to switch him to soya milk for a few months and make an appointment with the dietitian. He also told me to check out the Vegan Society website – as they are experts at ‘dairy dodging’, as I like to call it.

And that’s how it started. Milk and me became enemies once again and I have been doing my own detective work ever since. It has been a staggering and shocking mission – the number of other children with this condition has been the most alarming discovery. Only today, at my exercise class I met another mother with a little baby with lactose intolerance! Like me she is now trying to work it all out for herself as she has had some poor and contradictory advice from health visitors, dietitians and doctors.

In years since Zac got ill we have met many doctors, specialists and dietitians but at the end of the day, I am the one who ended up working out his intolerance and triggers and then worked out how to keep him well. So Zac, and this entire household is a dairy free zone and I have become an expert at spotting all the places it creeps in.

What happens next? Well, next week I am visiting The Allergy Show. http://www.allergyshow.co.uk/

The fact that there is a show, and recently a Free From Foods Awards Ceremony, is slightly unsettling. Who would have thought ten years ago that there would be enough sufferers, food manufacturers and specialists to fill one of the halls at Olympia? Anyway, I hope to find some more ‘Zac friendly’ food brands, there is a huge exhibitors list. I also hope to speak to some specialists and get some more information – particularly on why milk is such a problem for so many people. Apparently, there are some workshops and consultations available, so with a bit of luck I will come back with some answers.

Fairy cakes and brownies 4

Here are a  couple more simple recipes that are useful. Everywhere you go these days mums are talking about their fabulous adventures in baking and producing cupcakes that look like works of art. As the mum of an intolerant child, I always feel a bit inadequate when I turn up with shop bought, ‘free from’ fake cherry bakewells. So I have had a crack at altering a few easy recipes. I ‘blind’ tasted them on my family and no-one could tell that they were dairy free, gluten free and wheat free.

Fairy Cakes

150g/6oz of Pure sunflower spread

150g/6oz caster sugar

3 eggs

½ teaspoon of vanilla extract or almond extract

150g/6oz of Doves Farm self-raising flour

3 tablespoons of Alpro Soya Junior milk

3 tablespoons of full fat coconut milk

Beat in the eggs and vanilla extract, followed by the flour and milk. Half fill some paper cake cases, on a baking tray. Bake in a preheated oven (200 for an electric oven, 180 for a fan oven, gas 6) for 10/15 minutes.

Chocolate Brownies

100g/4oz Pure sunflower spread

150g/6oz of dark chocolate (dairy free), or melt down 150g of dairy free chocolate drops or buttons, try the Asda chocolate orange flavour ones to make the recipe a bit more interesting and less bitter

1 teaspoon of vanilla extract

1 teaspoon of coconut milk

100g/4oz Doves Farm self-raising flour

200g/8oz sugar

3 eggs

Preheat the oven to 180, 160 for a fan oven , gas 4.

Beat the eggs together and then add the flour and sugar. Next add the coconut milk and vanilla extract.

Melt the chocolate in a bowl over a pan of hot water. Constantly stirring until all melted. Be careful not to let it get too hot. If the chocolate mix is too bitter try adding an extra sprinkle of caster sugar, splash of vanilla extract and or a splash of coconut milk. Let it cool slightly and then add this to the egg mixture and pour it into a well-greased (with Pure sunflower spread) baking tin, ideally 150x200mm. Bake in the oven for approximately 30 minutes. Cut into squares to serve.

Grandma Cakes Reply

When I started this blog, I did say I would be sharing some recipes, so it is about time I did.

Here is one of the first ones we tried once Zac was put on his very strict diet. As a little one, he always enjoyed my mother in law’s homemade rock cakes, aka ‘Grandma cakes’. Once wheat, dairy and gluten were eliminated from his diet she reworked the recipe to make it suitable.

They are so simple and really delicious. Sophia and Zac love them. They can be a bit crumbly, and those crumbs are very fine and powdery but, in my experience, that seems to be the case with all cakes and biscuits made without wheat or butter. I guess as there is no sticky gluten or binding fat, there is nothing to make those crumbs bigger.

8 oz self raising flour – Doves Farm www.dovesfarm.co.uk make a good wheat free, gluten free flour and it is widely available
4 oz ‘butter’ – we use Pure www.puredairyfree.co.uk sunflower spread, also widely available
3 oz caster sugar
4 oz dried fruit
1 standard egg
2-4 teaspoons milk – we use Alpro Soya Junior milk http://www.alpro.com/uk/soya-plain
1. sift flour into bowl
2. rub in butter finely
3. add sugar and fruit
4. mix to very stiff batter with beaten egg and milk
5. place 10 spoonfuls of mix in rocky mounds on baking tray
6. Bake at 200 for 15-20 minutes

To add some extra flavour and perhaps some extra richness you could add an extra teaspoon or two of coconut milk. I sometimes add a splash of vanilla extract or almond extract, just to give them more flavour. No matter how I make them, they do not last long in this house, which is always a good sign.