As I have recently worked my way through ‘inventing’ 15 gluten free and dairy free breakfast options, I think it is time to bring a bit of science back to my 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 (my intolerant child) 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.
The tests did reveal his iron levels and vitamin D levels to be low and advised us to see our GP about a multivitamin and an iron supplement. They also attached a list of ‘high iron’ foods, most of which are foods he has had very bad reactions to, despite the results saying he is not allergic, so I won’t be introducing any of these without the advice of a consultant or a dietitian.
The consultant from Great Ormond Street and the consultant at our NHS hospital had agreed on their meeting Zac for the first time, that he may be suffering from non-IgE mediated allergies. The blood tests look at IgE – so their negative results indicate that that diagnosis is correct. In short it means that although Zac is not allergic to all of these foods in the ‘classic’ sense, his body still reacts in an ‘allergic’ manner when it has to deal with many foods or inhaled or contact allergens.
Here is a paragraph I have borrowed from the NICE guidelines, which explains it well.
‘There are two types of food allergy, depending on whether the allergic reaction is triggered by an antibody called immunoglobulin E (IgE). These antibodies are the chemical signals that set off a sudden allergic reaction. Reactions that happen very soon after contact with the food, such as rash and swelling of the lips, are known as ‘IgE-mediated’. Reactions that take longer to appear, often hours or days after exposure, are known as ‘non-IgE-mediated’. Symptoms can include eczema or stomach problems and can continue for a longer time.’
So even though Zac’s results appear to put him in non-IgE, it means he should still have treatment and be assessed and his diet should be extremely carefully managed and professionally supported. So that is our next step. We are now waiting to see an NHS dietitian who can help us work our way through this maze and possibly carefully, introduce some foods and see what happens.
My only problem is that Zac is now extremely mistrustful of most foods and is anxious they will give him tummy ache or make him itchy. So the food ‘challenges’ certainly will be a challenge. He is also extremely wary of doctors because the last few encounters have been very painful – the abscess squeezing and the blood tests. So the whole thing fills me with dread but I know we have to push on.
For a long time, I have managed Zac’s diet and have kept him well – tummywise. However, in recent times, the asthma and currently the eczema are getting worse and I feel that I have no control over those, as I am not sure what his triggers really are. I fear we are on the Allergic March. Something I read about the other day. This link explains it. Zac’s was in slightly different marching pattern, with the rhinitis followed by food allergy, followed by eczema and asthma and at present the eczema is the only thing I don’t seem to be able to control.
Obviously the blood tests tell me nothing with regard to his condition because everything was negative. All I know is that nothing, to my knowledge has changed in his diet or environment for a very long time and yet all of a sudden his eczema is very bad. He only had a few little specs at the base of his neck a few months ago and in just the last week he has gone from being a bit itchy, but skin fairly clear, to being quite covered across his back and arms and it is spreading down his legs – this allergic march seems to be gathering pace.
I know that diet is a massive factor with eczema and always thought that being dairy free would actually protect him from skin trouble. My hunch now is that his soya milk may be a factor. We were advised a long time ago to replace his dairy products with soya. So we did and as it never aggravated his tummy, we always thought he was ok with it. However, it is a known trigger for a lot of people and can aggravate skin as much as tummies, so perhaps he has ‘lost his tolerance’ to it. I don’t know. I am just guessing now and feel desperate for answers. When our GP saw him last week, she just diagnosed atopic eczema, gave us some Zerobase and Oilatum and told us to keep an eye on it – and bring him back asap if ever he blisters again, as she suspects his blistering episode was also a form of eczema.
I looked this up later and discovered that there are several types of eczema and they can look different. Zac’s looks a lot more spotty and like acne or chicken pox than the types of eczema I have seen in the past on family members and friends, so I didn’t really think it was the same thing. I would never have thought his elbow spots that got infected and led to the abscess were a form of eczema. However this link made me think there was a link and this could be it.
So this is where we are today. I have NHS appointments lined up for mid March. But I feel I need some clarity on his diet and his skin and the long term handling of this condition. It is very frustrating that from our early December appointment, it is late March before we can discuss his case again. The appointment was originally set for June, but I complained and got it brought forward. Now his eczema has suddenly got so bad, I plan to ring again and see if they will see us sooner. Or I might actually see if I can afford to see some privately, as I know I could probably be seen next week!
I feel very worried that he might get another infection in his skin, so feel that I should do what I can to prevent this. I am also concerned that it has in fact got worse since we started using the Zerobase and Oilatum. Could they be making it worse? It is just coincidence? Could there be other ‘allergies’ and triggers even though according to the blood tests he is not ‘technically allergic’ to anything? I just want to fix him and with every day that passes I get more anxious as his skin has changed before my eyes from golden blemish free velvet to red, spotty, sore and itchy. He is always scratching, always sweaty and it wakes him up every night.
I really fear that soya will be the culprit and if it is I am not sure what we will do – he loves the yoghurts, they support his diet well and I am not aware of any other suitable dairy free replacements. It looks like I will just have to make my own – good job I don’ t mind playing around in the kitchen!!!