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?