We have now had our letter back from Zac’s appointment with Dr Adam Fox at Great Ormond Street Hospital. The meeting was great and I came away feeling very reassured. Now I have my letter I feel even more vindicated for all my pushing over the years. I now feel I have something to show the GP’s at our surgery and the NHS people we are due to meet next week. No more will we be sent away saying ‘he will grow out of it’.
I am now armed with a very long and detailed letter which shows just how thorough Dr Fox is. In my humble opinion he is what a doctor, and a scientist should be. He felt that anecdotal evidence is not enough to base a diagnosis on and he explained what his hunches are and wants them confirmed with blood tests.
At the meeting and in the letter he explains that he believes Zac is likely to be suffering from ‘non-IgE mediated allergy – to milk and wheat’. http://en.wikipedia.org/wiki/Food_allergy
He has pointed out that you can still be ‘allergic’ to something without being in anaphylaxis. He said if you suffer pretty much instant reactions such as bloating, vomiting, upset tummy, generally feeling rubbish – that is an allergic reaction. Intolerance is much slower in developing and less severe.
He also said he felt that the three weeks Zac was made to eat gluten for the coeliac blood test was nonsense as you need around 6 months to make the test valid. He said that the severity of Zac’s reaction during that three weeks, that culminated in him being hospitalised with a temp over 40 degrees, a lacy skin rash and a very poorly tummy indicated a massive allergic reaction to what he had been eating. This makes him confident that Zac has an allergy to wheat, and the coeliac thing is a red herring.
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?
In the two years since we identified Zac’s food intolerances, we have worked so hard to learn all we can about the mystery ingredients that were sneaking into foods and making him ill. If you have a dairy intolerance, it is not enough just to look for the word ‘milk’ in an ingredients list and the same goes for anyone with intolerances to egg, and wheat.
The naughty food manufacturers put so many scientific sounding ingredients into food that your average shopper could never feel confident about recognising them as potentially harmful. So I have been digging around to pull together a list of ingredients to beware of which I keep handy when shopping. I want to share it with anyone who suffers with these problems or has to cater for anyone with allergies – so here it is. It might not be definitive – but the foods listed here must be avoided to those with intolerances and allergies. Some are obvious, others less so. I am still a learner myself, but I think it is a good start and should help clear up some of the mysteries of food labelling. Happy shopping!
Dairy free living in the UK is not easy. Gluten intolerance is widely understood and supported, but living a dairy free life is very difficult. Milk proteins creep in everywhere. You have to be very careful not to accidentally consume it. Finding a good dairy free chocolate is also very difficult. Even a lot of ‘dark’ chocolates still have some milk solids, which is just not safe for an extremely dairy intolerant child like Zac.
One of our early discoveries, after Zac’s diagnosis were the ‘Dairy Free’ branded chocolate buttons. They were relatively widely available in most supermarkets, on the ‘free from’ shelves. Sometimes we found the ‘milk chocolate’ variety and sometimes the ‘white chocolate’ variety. They were a little pricey but a nice treat for Zac, so I had no problems with grabbing a handful of packs every time we saw them.
Then just recently they disappeared from the supermarket shelves. I contacted the suppliers, Humdinger Foods and found out they were discontinuing them due to low demand. They told me they imported them from Australia and it was no longer viable as the supermarkets were also planning to launch their own brands. Fortunately after a bit of pressure they have changed their minds and are bringing them back. Great news. But it made me wonder. What is different in Australia? Is the demand much higher? Why does no-one make them here?
Zac is three and goes to lots of birthday parties. My friends are all fab and kind enough to consider him when making up party bags and so many have gone to the trouble to find the buttons. Very kind. So it is not just the mothers of intolerant children who missed them. Are you listening supermarkets???
One particular friend had to go through a dairy free phase with her children, so knows how hard it can be. She also has in laws in Australia and yesterday she knocked on my door with two bags of dairy free chocolates her family had brought over on their most recent visit. Extremely kind and thoughtful. I was very touched. Zac absolutely loves them and so do I. Thanks Kerry.
So now I am curious. I have now only come across a few brands of dairy free chocolate and most of them have come from Australia. So what is the story? Is dairy intolerance a big issue in Australia? Or do they just sub out the milk because they are such a health conscious nation and have long realised how damaging too much dairy can be? Or is just climate? By swapping out the milk does it prevent the chocolate melting so fast in the heat? I really don’t know. I am guessing. In fact I am asking. Aussie friends and Brit travellers who have been – what is the answer? Please tell me. I need to know.
By the way, the brand is Sweet William Dairy Free. Delicious. They have 25% less sugar (than what?). They are also gluten free, nut free, suitable for vegans, and Halal and Kosher approved. www.sweetwilliam.com.au
If they were available on the shelves here, I would be very happy indeed.
Just watching tv and saw an ad for Yakult. Could not help but wonder if this might be safe. I seem to remember years ago it was marketed as a product developed in the far east or something. So I wondered if it might be suitable for Zac as dairy is not a ‘staple’ in the far east and soya is far more commonly used.
Hopped on their website and found the FAQ page. Saw a good question. Is Yakult suitable for those with Lactose Intolerance? Yes – so far so good. Is it suitable for people who are gluten intolerant? Yes, it is completely gluten free. Even better. Then I noticed the million dollar question. Is it suitable for people who are allergic to milk? NO!!!! What a shame. It contains skimmed milk and is therefore not suitable for people who are allergic or intolerant to milk or dairy products. Zac’s intolerance to all things dairy has been described by his doctor’s, as closer to allergy level and therefore he needs to avoid ALL milk proteins and products – not just lactose. And that is the misunderstanding and potential trap to those who are new to this ‘dairy dodging’ business. It just crops up everywhere and something lactose free is just not safe enough for adults and children like Zac.