Our story 18

I am the mother of two children, Sophia and Zac. Sophia is 7 and Zac is 6. From birth it was clear that neither could stomach too much dairy but over the last few years it has become clear that Zac is most definitely an ‘intolerant’ child, who suffers unpleasant reactions to many foods and ingredients. Since he was one I have been working out how to feed him without making him ill and I am happy to say I have now made enough progress for him to lead a normal life.

He was just coming up to his first birthday when he contracted swine flu and this is when he became extremely intolerant to dairy – thanks to the weeks of diarrhoea. I quickly worked out what was wrong and cut the dairy from his diet but as time went on he still had far too many abnormal bowel movements every day. So since 2009 we have seen many doctors, paediatricians and dietitians and he is now on a gluten free, wheat free, dairy free diet and is ‘well’. I have been told he will grow out of it, but for now he actually still seems to be growing into it, and is still extremely sensitive to many foods and is now developing asthma and eczema, and apparently some reactions that look like Oral Allergy Syndrome. We still have many years of intolerance ahead of us I fear, and I feel I have to do all I can to try and make this easier for him, for me and for anyone else out there with similar issues. So this blog is my way of sharing our experiences and hints and tips on how to live with and ‘feed an intolerant child’.

My intolerant child as a grumpy toddler!

My intolerant child as a grumpy toddler!

Getting some help from Sophia

Getting some help from Sophia

Literally feeding an intolerant/intolerable child

Literally feeding an intolerant/intolerable child

My little taste testers - biting off more than they can chew!

My little taste testers – biting off more than they can chew!

Here we all are.

Here we all are.

Cooking together - not such a chore

Cooking together – not such a chore

My intolerant child - all grown up and ready for his first day at school

My intolerant child – all grown up and ready for his first day at school

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18 comments

  1. Hi Nicola. My eldest son has medically diagnosed allergies to dairy, egg, shellfish and wheat so it is with great interest that I read your blog. I have some experience with what you’ve been through and share your disbelief that so many foods contain “unnecessary” ingredients such as dairy and wheat! Why do crisps contain milk?!?! It makes it even harder for us that he is also allergic to egg as you wouldn’t believe the amount of free from foods (especially bread) which contain egg!! Anyway, best of luck with your blog, I shall be an avid reader! Nikki (Uni friend of Tom)

  2. Hi Nikki, thanks for getting in touch. I do remember you, I think we met several times, in the pre-children years. If we were all to get together now, it could be an interesting challenge, as so many of the little ones have a variety of intolerances and allergies. I was sorry to hear about your son. Those are nasty allergies and very difficult to ‘work with’. I am now starting to feel rather sad and anxious about all of this. It is very alarming to think that so many families are having to live with these problems, that were pretty much unheard of when we were children.

    I am starting to wonder if something has got into the food chain at some point. As you and I have both noticed, there seems to be far too many unnecessary additives in food with milk, wheat and egg derivatives appearing in the most unlikely places. It feels like an unknowing over consumption could be the root cause.

    I also wonder about the preservatives. Years ago milk used to go ‘off’ and bread would go mouldy just a few days after buying it. Obviously, we rarely have either in our house, but on the occasions we do, it can be in the house well over a week and still doesn’t seem to deteriorate in any way. That can’t be right, can it?

    The fact that the ‘Free From’ foods aren’t even really free from bizarre additives is also interesting. Why are Tesco putting ‘junk’ starch in their so called ‘friendly’ foods, when the farmers ‘Debbie&Andrew’ have gone back to basics and just put good quality meat in?

    It is starting to look like we all need to go back a few decades and follow the example of our grandmothers. We should just shop every morning with a local baker, farm shop, butcher and only buy the freshest food that has not been interfered with. It would mean we would spend all of our lives shopping and cooking everything from scratch, but as the mother of intolerant children, that is what we are doing anyway!

    Do keep in touch and let us know how you are getting on. Have you had much guidance from the doctors? In our experience, they have shown little interest and are just content with suggesting some dietary detective work. In my opinion that is just putting a ‘sticking plaster’ over the problem. Zac has never even been examined, just one round of blood tests. They seem content to discharge us now he is ‘well’ and I am keeping him away from ‘trouble’. Why is no-one trying to understand how a baby who was born healthy, has developed so many allergies and intolerances in such a short period of time? If we can get to this point in three years, it makes me wonder what lies ahead! Obviously I will do all I can to manage his condition and keep him healthy and if I manage that, it will be no thanks to anyone in the medical profession.

    Best of luck with everything and thanks for your support. Keep in touch.

    Nicola x

  3. Did your son have a skin prick test done at hospital? This can diagnose hidden allergies. Like your blog too.

    • Thanks Melody. Appreciate your comments and interest. No we have not had skin prick tests done. I have requested them. I have seen three GPs and two paediatricians, but not one of them seems to think it necessary!!!

    • Hi Melody, Thanks so much for your comments. Having visited asthma clinic today and had a discussion with the nurse, I think I will take your advice and will push on for the skin tests on both of my children. Sophia’s asthma is a bit of a mystery to us and I would not be at all surprised if hers is a food related trigger. What I find puzzling is why Zac has developed it. His has come on since his diet was cleaned up – he has had no dairy for well over a year. No wheat or gluten for almost a year. So I suppose this is telling me there must be another hidden allergy, as you say. Were you treated privately? I am starting to think this is the only way I am going to make any progress as the NHS doctors we have met are not very interested in his case. Nicola

  4. It’s such a shame that we have to fight such big battles to get the best care for our children! We had real issues in the early days of realising that Edward was suffering, but thankfully got there in the end. Nicola – I’ll contact you offline to chat a bit more. X

  5. Hi Nicola

    Have only just come across your blog and want to thank you for raising awareness of food intolerances and providing a forum for people to share experiences. My eldest son (age 13) was confirmed coeliac a year ago after I demanded blood tests to be done following my own research about Type 1 Diabetes (my younger son age 10 was diagnosed 4 years ago) as they are both auto-immune conditions and closely related. The journey the family has been on over the last 18 months has been very distressing, with the total lack of understanding and support from medical professionals. We have not only had to fight every step of the way but have found that we have been labelled as a problem family, asking too many questions and challenging information we are being given. Like you we have a good knowledge of nutrition and being vegetarian we mainly cook from fresh ingredients. My eldest son did not fall into their ‘known criteria’ and has suffered from extreme ‘gluten attacks’ when he has inadvertently eaten gluten (even after ingesting a little toothpaste) as we have now discovered gluten is in so many things not just food! Although his gut has ‘healed’ I know he is still reacting to allergens and we too have had to go private to get our suspicions confirmed. He has shown as being intolerant to dairy but not on any tests done on the NHS. Being vegetarian I have not totally eliminated diary from his diet yet but feel this is what I need to do but will be criticised by doctors who say their tests do not show this! I am wanting to gather support locally and have decided to do two local press articles in the next few months but would also like to work with you to explore what could be achieved on a larger scale. I hope to hear from you. xx

    • Hi,

      Thanks so much for getting in touch. I was sorry to hear of your struggles. I totally understand how frustrated and desperate it can make you feel. We ended up making a formal complaint to the first hospital we had dealings with and have since been referred to another. They are no better. Your experience sounds dreadful and it is a scandal. I do feel the time is right to elevate this to the press. I have been contacted by at least two other ladies who feel the same and have come across countless others on Gluten Free Guerillas. We all have struggles with the lack of care, interest and knowledge by the so called professionals. My other big ‘story’ is about how this has happened? I believe something must have got into the food chain and must be causing this. It is quite topical at the moment. Just the other day I saw a worrying article on ‘battery milk/dairy farming’. I have also read that there is a condition that damages the villi, much like Coeliac and it is caused by dairy. No-one talks about this yet. That is what I am convinced is wrong with my son and it is about time this was properly addressed.
      I know that it is all in the press at the moment and everyone likes to beat up the supermarkets and medics, so let’s go for it. Between them they are damaging the health of a future generation. Strong words, but that is how I feel.
      My long term plan is to establish a ‘reference centre’ community online, so let’s start now and see if we can gather enough people to raise proper awareness. Ready when you are! Hope to hear from you soon, Nicola

  6. Hi Nicola,
    Thanks for your lovely message on my blog – I would be very interested in trying to raise awareness of dairy intolerance/allergy – it is a ‘hidden/ignored’ problem that has huge impacts on the lives of the people involved. My dream would be to teach those who need advice to cook wonderful food and to feel just like everyone else!

    We have been lucky enough to have been under the care of one of the top allergists in the country, and as such have received fab care – the GP is another matter altogether! – they can range from knowing nothing to being downright rude!

    Look forward to hearing from you

    Best wishes

    Lucy

    http://www.lucysfriendlyfoods.wordpress.com

    • Hi Lucy,
      Thanks so much for getting in touch. Really lovely to hear from you. I am glad you are finally getting some good help and advice. It is hard to come by and I think you are right. We need to look after others like us and find a way to help them get the help they need and take away the fear of free from cooking.
      Kind regards and please keep in touch. I will keep you posted on the progress my end.
      Nicola

  7. Hi,

    Just seen your blog for the first time. My 5 year old developed eczema when he was three, which got really bad and ended up on all parts of his body. I work in nutrition so food allergy was my first thought and I got him tested.

    He is intolerant to wheat, gluten, dairy and yeast. I took him off all of these for 6 months, and it did get a little better, but not totally and would still flare up. I had to push and push my GP but in the end I got him tested, turns out he has an allergy to house dust mites. I have addressed this issue, and now he is 99% eczema clear all the time.

    I tried all those awful ‘free-from’ type foods, and they are really dreadful – nutrition-wise it was hard for me to give them to him because of all the crap they are filled with! And yes, that bread. Great in theory but still have to chuck half of it away due to holes, rips etc….

    Anyway, I just wanted to send you this as despite my sons food intolerances, it was the dust mites that triggered his eczema, and not the food. I was really amazed by that.

    Good luck, really hope you get somewhere

    All the best,

    Denise

    • Hi Denise, thanks for getting in touch. It sounds like you and your little one have been through some horrid things. Glad you got tested and got some results. I am hoping we will get tested and finally have confirmation of what we are dealing with. At the moment it is all based on assumption and food diaries.
      Interesting what you say about dust mites. Horrid thought but definitely one to consider. Along with mould – I have heard.
      As for the free from foods. I agree with you. That is why I make as much of my own as possible. He prefers it. Must be healthier and the rest of the family cannot tell the difference.
      Will keep you posted on all developments. Thanks again for contacting me. Best wishes.
      Nicola

  8. Hi- just seen your blog after a friend has liked your news comments on Facebook. Like the others- my son is allergic to dairy, egg and rapeseed oil, pollens, dust mites …the list goes on. I had a VEGA test done which was really helpful in identifying what he is allergic to and is not invasive. I then followed up to get to see a specialist for formal blood testing- was fobbed off that his symptoms were normal childhood snotty nose wheeze etc but when I said I was a paediatric nurse I got the referral to shut me up I think! Test came back positive for egg and dairy. No real support as what to do next. In my research I found a homeopath – christina head – who specialises in children and problems from vaccinations – my sons problems started when he had vaccinations and fortunately I stopped after the first 3. I have spent the last few years undoing the damage from them and building up his immunity. I have not had to use antibiotics – there is a remedy equivalent which might be useful for you. She has also written a book and does over the phone consultations. Dr Fox – I saw him at the allergy show in London- hopefully he will help but it is still very medicalised – I remember working with him years ago before he became an allergy specialist but can’t comment on how good he is but is very approachable.
    I am finding the rapeseed oil to be a huge problem as the supermarkets a putting it in everything and the restaurants are frying with it – mc d chips… If you read the literature on rapeseed oil( not the agencies that are supplying it but real research!) it is shocking that we are allowed to consume it. If you want the contact details for the homeopath or about vega testing please let me know. Good luck in your journey

  9. Hi there, wow what a great site, Thankyou so much for all your help! Our son is 2 and earlier this year we FINALLY had it confirmed via testing droplets on his skin, that he is allergice to proteins in milk, so dairy free at all times due to his severe reactions. It has been upsetting to see him missing out on yummy treats that his friends and cousins can have, and being so small he doesn’t always understand, he just knows he can’t have it as it ‘has milk in it’. He will grow out of this they assure us, but not for a few years yet, may even be when he is 6 or 7 years old, we just have to wait and see. Anyway, lovely to see someone else understands our plight, especially when it comes to eating out etc – we have been told before he may not eat his own food brought in a box, even after being told he has allergies – grrrr! Anyway, thanks again, let me get back to reading! Lyndsay x

    • Hi Lyndsay, Thanks so much for the lovely comments. Your story sounds very similar to ours. As you have probably read Zac was two when I had to completely remove all traces of dairy. How I used to dread the chime of the ice cream van! But now he has forgotten and loves his special dairy free foods. In fact he ‘heaves’ a bit when he looks at anything that looks and smells like milk or cheese.
      Like you I was told he will grow out of it. But he is nearing 5 now and still very sensitive, so I think it could take some time, but we are in no rush. It has become so normal to our way of life and he is doing so well as he is, I am in no hurry to rock the boat.
      As you say, one of the big problems is eating out. It has kind of ruined that for us. It is a lot easier to be gluten free than dairy free. Being both is pretty impossible. Being made to feel unwelcome is even worse and truly discriminatory, in my opinion. There is lots of awareness raising to be done and this blog is my way of trying. I have lots more posts to be written up soon, so will have some new and hopefully interesting new material for you.
      Take care and keep in touch,
      Nicola x

  10. Hi ya,

    We are also an “intolerant” family. I have 2 boys aged 3.5 and 1 (today gulp!). We are also under Adam fox. I couldn’t find a link to private message you but I think we are local to you! I also have a blog – the intolerantinsomniac.tumblr.com if you want to get in touch!

    I’d be interested to know how you got referred to dr fox etc and if your children are on any medication. We have life fairly sussed with the 3.5 yr old (although doesn’t have dairy, wheat, soya, potatoes, tomatoes, corn, eggs, parsnips, dried fruit and more!) but are still finding our way with our youngest…

    Anyway, great blog 😊

    • Hi Lucy, Apologies for the delayed reply. Thank you for getting in touch and for the kind comments too. To answer your question – we didn’t get referred to Adam Fox. Someone I know told me about him and I looked him and got a private appointment. I couldn’t get a referral through the NHS, they wouldn’t even do so much as a blood test on Zac. Once we eventually established that Zac had non IgE allergies, we were advised to give him anti-histamine twice a day. That seemed to do the trick. He is now 7 and a half and a lot of his problems seem to have settled down – and I was starting to consider some food challenges…but he accidentally ate a cake last weekend that wasn’t dairy free and was screaming in pain less than 2 hours later. He didn’t vomit or have a really upset tummy but it told me all I needed to know. Milk baked into a cake or biscuit is one of the first steps on the ‘milk ladder’ challenge and the fact he reacted swiftly and most definitely tells me that if we were to go further along the ladder and try a yoghurt or cheese he could be very much worse. So we are staying dairy free for a bit longer yet. I haven’t got the nerve to try any wheat containing products yet. That will have to wait until the school holidays. It sounds like your little one has a lot to contend with. Not easy to cater when you can’t have those ingredients. I will check out your blog, it must be very interesting. Good luck with the youngest too. Best wishes xxxxxxxxxx

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