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.

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.’

Here is a link that explains it in more detail.

http://www.nice.org.uk/nicemedia/live/13348/57929/57929.pdf

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. http://www.allergyuk.org/causes-and-risks-of-allergy/the-allergic-march. 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 that there was a link and this could be it. http://www.nhs.uk/Conditions/Eczema-(atopic)/Pages/Complications.aspx

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!!!

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12 comments

    • Thanks so much. Good tip. I have stayed away from oat based stuff for now – unless they are gluten free oats, as they still haven’t ruled out Coeliac or gluten intolerance! When I see the dietitian I will ask about it though and if she thinks it is safe I will give it a go. Thanks also for the insight about the creams. I don’t know if it is a coincidence but it is ten times worse than this time last week, i.e. before we start putting it on him!

      • yep good point re coeliacs. my cd daughter is ok on soya so she has that. quite a mixture in my fridge!! there is almond milk too – but not sure about calcium levels. both girls are on calcium supplements and my cd daughter has vit d too. it’s a minefield!

      • It is a minefield – no wonder you are a tired mummy. It is exhausting just working out what to buy and how to feed them. The supermarket is a nightmare, not to mention what this all does to the bank account! I think I have no choice but to get dietary supplements for him now, as there is no way his diet – and fussiness will allow us to get in all he needs! Headache!!!

  1. Hiya. MyItchyBoy has been on Oatly since coming off prescription milk. Am in a panic this week as since a cold he’s not wanted cereal in the morning and therefore not getting enough calcium. Having said that, it is in other foods but prob not enough. i find Oatly a bit rubbish for cooking though and the cream can be hard to come by. It is also disgusting so I don’t use it in as much stuff as I could do if I could stomach it (I’m an Alpro soya girl myself as dairy gives me eczema!).

    We did see a dietician and found it useful. One main thing was that there is a standard recommendation that all under-5s should be on multi-vitamins, even those not on a restricted diet. The other useful thing is they can give you lists of foods with calcium in, for e.g and the portions you need and advise on different foods to try – even ones you might not normally think of (e.g. indian or polish food) as we do tend to stick to what we know a lot of the time as adults.

    I’m lucky that MIB tends to be fairly good with food and brave on trying stuff. However, I can appreciate the doctor’s thing. He does have a tendency to kick off even for a repeat prescription appt. Understandable, but you are still the one having to put on a brave face and wanting to explain to the rest of the waiting room.

    Also, MIB gets atopic eczema that looks like spots – kinda rashy. That’s why it took a while to diagnose and I kept being told it was a viral rash. His skin was amazing at the weekend, so soft and looked like a ‘normal’ child. A few days later though and he has a spotty tummy again and more normal eczema on his legs. Makes me want to cry. That and the getting up three times in the night to add more cream!!

    Some suggestions:
    1. Make sure you check the creams you are using are doing a good job. If you are not seeing an improvement, ask to try something different. Have you been to a dermatologist? If not, insist on seeing one asap. They will talk you through the emollients and steroids.
    2. Buy/borrow a copy of this book: http://www.amazon.co.uk/Eczema-Childhood-Facts-David-Atherton/dp/0192623982/ref=sr_1_2?ie=UTF8&qid=1360273315&sr=8-2
    3. Check through everything (suggest getting a grandparent or friend to help as you may miss something) from him getting up in the morning to going to bed at night – what laundry product, what bedding/jammies made of, what eats for breakfast, what lotions and potions in the bathroom, what perfume do you use, does he touch the chopping board/worktop/cloth where food is prepared even if he doesn’t eat the food. And so on……there are so many times that we don’t know what sets MIB off, but sometimes, just sometimes there is something that you can pinpoint. Our latest is plasticine. No idea why. Although, a lot of stuff like that (including crayons!) has soya in it, as do most prepacked bakery goods.
    4. Food diary? Tedious but usually worth it. Worked for me and I have used for MIB. He gets cramps with grapes that he used to eat tons of. They aren’t good for my tummy and we discovered a link that not good for him either. He still has a few at nursery snack and I have to limit the amount of raisins too. I think they just have sensitive tummies bless em.

    Right, this is realllllllllllly long, so I will stop. I hope it helps to know you are not alone, but unfortunately it is only a small consolation. Keep fingers crossed that in time it will improve, with age it will pass and be grateful that the peanut blood test was clear cos, trust me, that’s a crap one!
    Hugs

    • Thanks for all the advice. It is all very useful. Some things I have done and considered, and others I have not, so will get on it. I will let you know how it all goes too. It sounds like the type of eczema our boys have is similar in appearance. The GP who recognised it at our practise is the only one I think is any good, so might pop back and discuss the creams. Seeing the dietitian next week to discuss what else we can do – and need to get to work on his ‘environment’. It is all so daunting though. Poor little man. But you are right, I should be happy that he is not truly allergic to anything and especially nuts. I suspect he is very sensitive to fruits – I guess he just eats too many, as there is not much left to snack on when there is no dairy and gluten in your diet. He is always hungry. Gluten free food is not very filling. But as I said, he has some real ‘fear’ of food and doctors now, so this dietitian is going to have to work hard to gain his trust and convince him that trying new foods will be ok! Best of luck with everything and thanks again for contacting me. Reallly, really appreciate it.

  2. Watch out for stone fruits. MIB is fine with small amounts now, but we still stay clear of them. Discovered that one when I was trying to be a good Mum and give him avocado as a baby like everyone said I should. He was also sick with apricots. If there is mango in a smoothie or something then these days we let him have it, but I still keep him away from full on portions of just stone fruit. Stone fruit allergy/intolerance also linked with latex allergy but can’t remember how.

    MIB also loves cooking and baking and has helped in the kitchen from a young age. Because without egg and milk he would otherwise never really have cakes, biscuits, etc. I found that him helping me (and licking out mixing bowls!) helps him to learn about food and also get involved in a positive way. He is also one for begging for raw pepper, etc while cooking meals and likes to look through cookbooks to see which recipes we can make for him.

    • He does love peaches and I have often wondered if these were a problem – as he is much more itchy in the summer when he eats a lot of them. He once had a very worrying crazy itching episode immediately after eating a fruit salad – he put the mango in his mouth but spat it out, but still had a reaction. Dread to think what might have happened if he had swallowed it. Funny you should say that about latex too, because he had a very bad skin reaction to the gloves of the person doing his blood tests and is very ‘funny’ with plasters. Some of them appear to ‘burn’ his skin and leave a perfect ‘plaster imprint’ on his skin for hours after they have been removed. So that is all useful information. Thank you. As for the cooking, I do involve him and he is interested but he really is very anxious about trying new foods. It is probably a psychological issue now but I am always cooking and having fun in the kitchen and involve the children where possible. I do all I can to make his food interesting and explain that it is ok but he just will not open his mouth some days. Very sad.

  3. Another thought is apples. There is something to do with the sugar in them (I’m afraid I am rubbish at remembering the reason why, I only remember what to avoid!) that makes them hard for some people to digest. This is not an allergy thing, but I find that my son struggles with anything that is not good for sensitive tummies in general. Husband and MIB both struggle with apples in excess. Unfortunately they are in so much and not marked as an allergen. It’s just another thing that might be good to avoid if trying to ‘bland’ things down until know more about what is setting him off.

    • Oh my – he has just really got into apples! Perhaps that is a link with his skin. It is definitely fruits that make him itchy. But until recently there was never anything visible on his skin. I need to get this checked out. Thanks for the tip though.

  4. Hi,
    I’ve only just discovered your blog and don’t know much of your story, but have you tried an elimination diet? For intolerances this is the only way to know, there aren’t any medical tests. Don’t expect your dietician to know enough about this, many know very little. The best source of information I have found has been Sue Dengate’s work and her website http://fedup.com.au/

    • Hi. Thakns so much for the tips. I will look out for that website. We have done elimination diets. But a long time ago and that is how we arrived at a dairy free, gluten free diet. Once we did that his tummy was better. But now he is having skin trouble, perhaps we need to do it again to establish what is behind the eczema. Will let you know how we get on. Many thanks and best wishes.

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