Dermatitis herpetiformis – does it look like this? 11

It has been a while since I gave an update on Zac’s condition. This week we had a distressing new symptom to deal with and I wanted to share it with everyone – just in case anyone else is going through this and is as puzzled as me. Zac has been ill with his intolerances and allergies for more than three of his four years. I have been seeing doctors and paediatricians and dieticians since he was one and they all say the same. He will grow out of it. But the truth is he has grown in to it – he started off dairy intolerant, then became so sensitive to wheat and gluten that I suspected and still do suspect he has Coeliac disease. He is also allergic to cats, has hay fever and has started night coughing, which I know (from experience) is an early sign of asthma.

I have argued that he needs a full allergy screen and further tests. So far all he had was a blood test for Coeliac which came back negative. But previous to this he had been on a gluten free diet for months. We introduced gluten containing foods in the three weeks before the test but I suspect he hadn’t eaten enough to give a positive result. He was so ill by the end of the third week, he could hardly eat at all and ended up in hospital!

Despite all this, not one GP at our practice thought he needed to be seen again and like a fool I accepted this. They flattered me by saying how well I was managing his condition and just said I should keep him on a very restricted diet for several more years and then they would consider challenging him again.

Then in recent times we have had some accidental ‘gluten’ incidents which have told me that we still have a problem. The first one was several months ago when he had a gut bloating reaction after eating Burger King fries – which I later discovered are not gluten free. Then more recently after a supposedly gluten free, dairy free meal at Carluccio’s he was suddenly hit by an uncontrollable urge to scratch. He was literally clawing at his face. I ran to the nearest Boots and got him some anti histamine. Within about twenty minutes, he stopped scratching and fell asleep.

As far as I was concerned that was an alarmingly swift and very definite allergic reaction. So I went back and saw yet another GP and begged for a referral to a different hospital (our third). This GP was sympathetic and surprised that both previous had discharged Zac. He referred us to a dermatologist at another local hospital but warned there could be a wait. A month later and I still have not got my appointment.

Then this week everything changed. We spotted a blister on Zac’s elbow. He was scratching and really distressed by it. He got to the point where he sandwiched it between two cushions as he couldn’t bear for anything or anyone to go near it. I thought it was just a knock from pre-school, but after several days I noticed it looked nasty and a bit infected. A bit like chicken pox. Then my husband spotted another similar one on his hand and wondered if we should take him to a doctor. Later I spotted another on his knee. I called the surgery again and was lucky to get an appointment with another GP that we hadn’t seen.

By the time we saw the GP the one on his elbow had ‘given birth’ to several other tiny blisters all around it. Zac also had a runny nose and was very tired. He had a lot of this before we eliminated all his ‘triggers’ so as far as I could see he was having a reaction to something and his immune system was struggling. I have long suspected Coeliac disease and have been aware of dermatitis herpetiformis. Zac has had a few tiny breakouts before but I put that down to a heat rash. He is quite a sweaty boy. But in recent times he has become a very itchy boy and often wakes up in the night and in the mornings often has claw marks on his face where he has scratched in his sleep.

I decided not to ‘feed’ the GP anything and just showed him the blisters. He said it was clear Zac just had a cold and that the blisters were a reaction to the virus. He said they had spread because he has scratched and got infected. He told me to stop him scratching! I asked if he needed anti biotics or anti histamine or anti inflammatory. He said no, just tell him not to scratch!

I could feel my blood boiling and could tell he was not going to associate it with his other conditions so I asked if he thought it could be linked to his food intolerances. He said ‘I doubt it’. I also told him we had been referred to a dermatologist because of his itching fits and he said it was up to me to chase.

When I got home, I went onto Dr Adam Fox’s website http://www.adamfox.co.uk/ and emailed a query. I was desperate. I gave a potted history of our case and said I have been trying to get a referral from GP’s for years but am getting nowhere. Within minutes a lovely lady called me and asked when I would like to come in. We have an appointment for mid November – for the bargain price of £260!!! We can’t really afford it, but I reckon I spend that every month on his ‘special’ foods, so really it is a drop in the ocean and I cannot bear to see him suffer any more. It is clear that the NHS have no interest in my itchy boy and I have no option but to sort this out myself. I feel so guilty. I don’t know why I waited and hoped for the NHS. Never again.

So now we are counting down the days until our appointment. Yesterday I decided I should take some photos of his skin outbreak. Chances are that by the time we see Dr Adam Fox, the skin will have cleared up and it might help if we show him his skin during a flare up. I also took pictures because I want to show everyone what this looks like and ask any of you who are or know Coeliac sufferers – does this rash look like dermatitis herpetiformis to you?

I have been on several websites and think it looks quite similar. It is very distressing to the images. My husband and I have felt very sad about it this week and are furious that it has got to this. Even if it is not DH – something is waking Zac up at night, making him feel very itchy and uncomfortable and is making him a bit unwell. His tummy troubles have not flared, thankfully. I am so incredibly vigilant about keeping him away from dairy and gluten – so all I can suspect is cross contamination.

The reaction at Carluccio’s was alarming. He didn’t have a rash that day but his itching was severe. I am guessing that perhaps the gluten free pasta came into contact with something it shouldn’t have. I don’t think it was a dairy contamination. Dairy just makes him sick. Gluten gives him a bloated tummy and cramping, and he has been suffering with sporadic episodes of that recently. Although I cannot work out why. I have taken the trouble over the years to learn about all mystery sources of gluten and dairy and how they can get into our food and have been fanatical about keeping Zac safe. He has also been very good at looking after himself and is vigilant about only eating his special food.

So now I am wondering – has he become so sensitive or even allergic that a dusting of flour by accident in an non gluten free kitchen could have caused a reaction? Could it be getting in via another ‘trace’ source? If that is the case, his reactions are very severe for such a miniscule exposure. The other option is that he is having a reaction to something else and perhaps there is another allergy that I am not even aware of. Needless to say, I am hoping and feel confident that we will know more once we have visited Dr Adam Fox. But in the mean time, I would love to know what any of the rest of you think. Please take a look at these photos and let me know if you have had similar experiences.

Here is a link to the DH website for anyone who is interested. I have found it useful.

http://www.dermatitisherpetiformis.org/

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11 comments

  1. Oh Nic, poor Zac. That doesn’t sound good at all. Thank goodness you’ve managed to get an appointment with Adam Fox – I am sure that he’ll take the situation more seriously than anyone you’ve seen so far. Fingers crossed that Zac feels better soon. Let me know how you get on with Dr Fox. x

  2. That looks very similar to what we call “corn spots”. I don’t know any posh name for it, but I do know that Joseph gets these when he’s had corn – usually on my bottom!!! Poor boy it looks very sore sometimes!! Hope Zac feels better soon. I know your fustration with Drs. Greg has been having a really bad time with reflux (he’s dairy intolerant), but no dr’s are interested – except to give medicine which works for a while rather than finding the problem. I haven’t even bothered going about the boys as thankfully I knew about it from family history and just try and keep them off. Look forward to hearing what Dr Fox says.

    • Thanks for your kind words Debbie. Sounds like your boys have it tough too. Poor little chaps. Hope it isn’t down to corn. But I suspect it could be. I am so vigilant about other things and am starting to wonder if there is another mystery trigger that we have not yet identified. Zac loves corn too. Most of his cereals and pasta are corn based. His favourite dinner ‘veg’ is sweetcorn and he likes pop corn and corn tortilla chips too. So probably an overdose. Typical. Once you take out corn, as well as wheat and dairy, there is not much left to feed a hungry four year old. Yikes. More challenges to come I fear. Best of luck with your boys and thanks for keeping in touch. Lovely to hear from you. Nxxxxx

      • I’m sure you know about the rising evidence of being gluten intolerant can include all grains. My mother-in-law stays off most gluten as she is now diabetic and this is the best way to keep her sugars under control. She started with just corn, and now keeps off everything – including most dairy!!! AGH!!! But we get things sorted… I would just say, it’s easier when they are younger in a lot of ways. I have now reached the point where if they are given a bag of sweets which I know they shouldn’t have, I have to let them choose – they soon learn about the consequences! You’re doing a grand job for Zac – keep it up!

      • I realised most grains could be troublesome but was not so clued up on corn and the others. Yikes. Looks like I have some reading to do.

        The irony of the ‘treats’ issue is that it all ‘fell out’ of his dairy intolerance. When people are being kind and trying to find a dairy free ‘treat’ and cannot get hold of Moo Free chocolate or something they hope and assume something like Haribo will be safe because it is dairy free and people assume gluten is just in bread and pasta.

        I am now starting to understand wheat based sugars may be our problem. The biggest irony is that Zac doesn’t really have that much of a sweet tooth. He also seems to have an inbuilt self-preservation instinct and is very fussy and never puts anything new in his mouth without checking first.

        Until we have a full allergy screen, this is all based on assumption and my ‘food and flare ups’ diaries. Not really sound medical evidence! Let’s see what the expert has to say!
        Thanks again Debbie. Best wishes xxxxxx

  3. This is so much like my daughter. I know who you need to see on the NHS. Message me on Facebook at parents protecting children UK and we can talk without the world reading it

  4. Oh my, I feel for you – it’s maddening to feel like you are not heard. You are a GREAT Mothers and your son is blessed to have you advocating for him. YES, YES, YES he can get the rash (DH) from a dusting. My children and myself are HIGHLY sensitive… and a dusting is all you need, especially if you always eat gluten free – your body is that much more intolerant if you are truly celiac. (many hugs) I pray you get answers you need to put this to bed! Meanwhile – keep up the great work. They are RIGHT, you shouldn’t challenge him or anything like that until he is an adult and through puberty – if you want/need to. Celiac can stunt growth if left undetected, and gluten is continued to bog down the body. God bless!

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