My son Zac is almost four. Has multiple food intolerances, tested negative for Coeliac but has all the symptoms. Am trying to get past my GP's and get him tested again. He has gluten free, dairy free diet and despite being so young is very good at managing it when I am not around, so has very few 'accidental' gluten encounters.
His past symptoms were mostly just 'gut' trouble - bloating, cramps, severe stomach upsets. In recent times he has developed skin trouble too. Uncontrollable itching - but no rash - after a supposedly 'safe' gluten free, dairy free meal in a restaurant. And in the last few days has developed two 'blisters. One on his elbow and one on his hand. They are both so painful, he won't let me examine them closely. But they are very raised spots, mostly red and angry, with white heads that looks like they will burst.
Anyone else had this type of skin reaction?
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Feedingmyintolerantchild
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Thanks so much. The blisters do look a bit like bites and he does scratch like I would if I had a bite. They also look a bit like chicken pox spots just before they fully blister up. There are not many but Zac has been GF for over a year - so it can only be a trace that he is accidentally consuming.
He has the odd slip up when a mystery food ingredient sneaks in - usually when he is out of my care. But we are both pretty hot on all the secret names for gluten containing ingredients. However, I am now starting to think it might be in 'sweeties'.
He doesn't have much in the way of confectionery. I am a bit of a mean Mummy and don't want him to and I am afraid of everything as he is so sensitive to gluten and dairy. He doesn't have much of a sweet tooth and is very nervous of everything he puts in his mouth. Being dairy free too, we mostly give him dairy free chocolate as a treat, but recently he has been given the odd bit of 'Haribo' which people have assumed is safe. I know they are dairy free, but perhaps they are not gluten free. That is the only source I can think of.
Earlier this evening I found another spot on his knee and it looks like there is one coming up on his cheek. He has been complaining and actually protecting his sore hand and elbow with a cushion! He wont let me look properly, so I know he is feeling very tender. It is heart breaking. So in the end I decided to go straight to Dr Adam Fox and have booked in to see him at his private clinic. We cannot really afford it, but I cannot see my child suffering. I know he has something wrong. I need to know what it is. I know he will never get a referral through the NHS. We have been trying for three years, he is not even four yet! Will let you all know what comes out of it.
Altho' relatively rare this may be dermatitis herpertiformis that is an auto immune disease linked to coeliacs.
I started with a rash and it took my GP's around 12 months before they referred me to a Dermatologist but when I finally saw one she took one look,took a couple of tiny skin biopsies and it was confirmed as DH and from that they did further tests that confirmed coeliac's disease as well.
The rash usually comes on the pressure points,elbows,knees,back and side of the head,between the buttocks and is an intensely itchy rash.
Zacs mum, just a thought my daughter is off gluten and dairy tested for nearly everything tests coming back normal but her body says different,anyway she was recently tested poitive for fructose intolerance through a hydrogen breath test which been told no longer do these tests (too expensive) it was just your description of the spots that caught my eye as did most of his other symptoms.It may be worth a look at fructose intolerance. hope this may be of some help.Yes its heartbreaking watching our children suffer it truly is.
Hello Zac's Mum - I agree with another anser - it does sound like DH. I thought I had chicken pox at first! Very nasty watery itchy blisters appear around the elbows, knees, and anywhere else but always symmetrical. Scarring is minimal but it does leave a purple coloured bruise! If it is DH although even on a GF diet, it can take up to 2 years to clear. I hope you have a good GP who can refer Zac to a good dermatologist. Good Luck x
Thanks everyone. I saw a GP this morning and he said it was likely to be caused by a virus. He didn't think it was in any way connected to Zac's food intolerances and other allergies. He just told me to tell Zac not to scratch it. Utterly hopeless. Roll on 13th November - we have an appointment with Dr Adam Fox at Great Ormond Street. We don't have private healthcare and are paying for it ourselves. I have now officially given up on the NHS. We have seen every GP at our practise and 2 paediatricians at two separate hospitals. Not one of them would refer us - yet when I emailed the Dr Fox website, someone called me back in minutes and said I did not need a referral and they would see Zac. I know I should have done this before, I just thought we might be able to get through to him via the NHS. I should have known better. I am sure we will make some progress once we meet him. I have heard great things.
Thanks everyone for your thoughts on Zac's blisters. I am going to post a picture on my own blog, so if anyone is interested, take a look later today and see what you think. It all seems to much of a coincidence to me. He is also very tired and has a slight runny nose - other signs that Zac is fighting something.
It sounds like DH to me too. Good luck!! I too have multiple intolerances, and all 3 of my daughters started off with them, especially teh middle one. All heathy teenagers now! It can get better! It took me decades to be taken seriuosly by doctors, and was so lucky in an NHS experimental clinic took me seriuosly-that was 26 yrs ago! Things are much better now, knowledge so much better, but nhs has no money. So after all this time i am the expert!! Well thats what it feels like! and no one knows your child like you do.
I very much hope he will grow out of a lot of intolerances, especially when he is resricted from eating them, my daughter s didi anyway!
Thanks so much for you kind comment Ellen29. As soon as I have any diagnosis from our appointment at Great Ormond Street, I will definitely be lodging an official complaint. I already put one it Northampton Hospital who took three months to give us our first blood test result. We have had such a lack of care or interest that it is truly shocking. It feels like he is being punished because I am working so hard to keep him well. If I let him eat all the foods that make him ill and got him to the point where he was desperately ill I think they might see him - maybe! Obviously, no parent would do that, so we are doing the thing that most end up having to do and that it is try and find the cash for private treatment. Obviously our son is priceless to us and it is easy emotionally to make sacrifices for him, but it really shouldn't be this way. His blisters have got worse and worse this week and he has also had croup. His immune system is terrible and we really need to understand what causes his body to fight itself like this. I will keep you all posted. Thanks again.
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