Dermatitis Herpetiformis - does it look like this

Dermatitis Herpetiformis - does it look like this

It has been a while since I gave an update on Zac’s condition - feedingmyintolerantchild.com

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 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.

dermatitisherpetiformis.org/

18 Replies

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  • The third picture (I couldn't tell where on the body it was) on your blog is not related to the outbreak on his elbow- it looks like a simple spot to be honest with you- it has a white head on it which suggests it might be a small follicle that might have become superficially infected. Nothing to worry about.

    The outbreak on his elbow could be almost anything (indeed, DH has a wide differential itself even when being looked at by an experienced dermatologist) so I don't think there's much point in asking people here what they think it looks like. The only way to diagnose it properly is to biopsy it and test the specimen for IgA deposition with a special lab test. I would say however that DH is usually much more florid and wide-spread than that and it is also usually symmetrical.

    Your son is clearly atopic, so it might well be allergic eczema too. Although again, that is usually symmetrical.

    Paying £260 for an appointment for what is a chronic problem (and one that will probably require multiple pricey appointments and may very well never be completely diagnosed) is in my opinion a waste of money but I do understand that this is hugely distressing for you and your son. You already have an appointment with a dermatologist (who will have seen many cases of DH) so it might be best to stick it out and wait for that. If necessary he can refer you to a paediatric allergist (although it seems you have already seen some?). Allergen testing via skin patch and prick as well as IgE blood tests are notoriously inaccurate so do not assume that getting these tests performed is the be-all and end-all. In fact, that is probably the exact reason why all your doctors have so far been reluctant to suggest them.

    And your son *will* likely grow out of it. He's only four and the kinds of allergies you describe (there are other kinds, particularly peanuts, tree nuts and certain types of fish that commonly persist life-long) are, in the vast majority of cases, grown out of. But this might only occur when he gets significantly older, though many children begin to see an improvement around the ages of 5-6.

  • Hi, my DH doesn't usually look like that...mine is like tiny pinprick blisters but I don't think we are all the same. Have you thought of getting a private appt with the dermatologist that you have already been referred to which will work out slightly cheaper and in my experience they then transfer you over to their NHS list. I did this with my thyroid and my initial NHS appt was used as my followup. Just thinking that then they may get to see the rash and be able to test it.

  • There are variations that it may look like depending on the individual here are a few of the pictures to compare yours with but perhaps it might be best to have it confirmed by your doctor just to make sure:

    dermnetnz.org/immune/dermat...

    dermatlas.med.jhmi.edu/derm...

    aocd.org/skin/dermatologic_...

  • My experience with the DH was an escalation of the blisters and the pain that went with it. After being looked at by 3 different GP's without a diagnosis over the course of two weeks and once being sent into a side room at reception in my surgery as they thought I may be contagious, I said enough.

    I have private health insurance through my work so I asked for a referral to a dermatologist. As I walked in the consultant asked if I had bother with my stomach as what I had looked like DH. She did a biopsy there and then which resulted in a cut that needed six stitches around 4 inches down from my elbow where I had an outbreak. She spoke about needing a black bottle for the tests, I am still not sure what that is. However the biopsy confirmed DH and a subsequent stomach endoscopy and biopsy confirmed Coeliac. My DH looks pretty much like the video. The only relief was to scratch and burst the blisters and that itself causes issues. I am 50 now and as I have posted before, having constant blood tests to evaluate my blood count. I have just lost a week off work with flu and that has been attributed to my immune system being compromised by a low blood count. The flu also brought out the DH again despite the dapsone.

    To me the blisters are as painful as cold sores and even a small sore feels huge, that will explain why your son felt such discomfort. I was being asked if something was biting me and people looked alarmed when they looked at me (more alarmed than usual..:-) ). The doctor may look at a biopsy and I am not sure if you need an outbreak to get one that will help or if they can test without an outbreak. Just as info for you, I had years of the stomach bloating and trips to the toilet after eating breads and other foods with gluten that I had no idea about, all without a diagnosis.

    This is the lady who diagnosed me Olga Kerr as the link below and she left Ayrshire to go to the Wirral. whnt.nhs.uk/your_hospitals/...

    I find it infuriating that people have to get private consults with the same doctors who work for the NHS to get successful diagnosis rather than get the help you need from a GP and a referral. Getting a referral seems to take forever, however I am eternally grateful for Dr Kerr for her swift diagnosis. I hope you get what you need from the consult and wish you and your son luck.

  • Whatever version I have looks just like that.

    I saw a skin specialist and although he didn't do a biopsy he said from the way it behaved combined with the other symptoms he felt it was DH.

    Mine starts with an itchy little blister looking thing then progresses into a full on hard lump which can stay active for months. The skin thickens and eventually if I am lucky it fades to a purpleish scar. At any one time I have several active (growing thicker lumps) in places from my elbow to my back. Years ago they surgically removed the one on my hand twice, of course it just came back. Like your son if I ingest gluten sometimes I'm ok, others a few new spots appear as a result. The itch is unbearable and I use ice in a cloth to stop it.

    I was one of the unlucky ones who had strange feelings when on dapsone, quite spaced out so I couldn't take it. Annoyingly I find I have little control over the skin problem regardless of anything ((and I have tried most things) I try.

    Now I use a foot skin tool to gently rub away the excess tissue and that seems to help. Covering the area with a plaster also makes it reduce for me.

    I had a reaction in Carluccios too...makes you wonder.

    I hope his skin settles down soon, mine varies so his might too.

  • Hi

    I was diagnosed with DH 12 years ago, I went to my Doctor and said I think I have the skin condition associated with celiac disease which I have had for 14 years.

    He sent me for a biopsy which confirmed it - a simple procedure that took a piece of the rash from my bottom and elbow ( these seem to be the most common areas of the body that are affected ).

    Was put on Dapsone which cured it within days ( Dapsone is also used to treat Leprosy ) and I maintain a maintenance dosage of Dapsone - 50mg every other day - as well as following a gf diet. Warning Dapsone can affect the body in various ways and can shorten life span according to my Doctor - Dr Hymes in Walkden Manchester - who is very good. We discussed and I stated to him that I considered quality of life to take precedent over length of life - not being overly dramatic - but I have lived a very fulfilling life over the last 12 years.

    I am fanatical about following a gf regime but there is hidden gluten ingestion, whilst it can say Gluten Free on the tin, bottle or carton this only relates to the ingredients, not the packaging. Some plastic trays that contain fish chicken etc are coated with a glaze that may contain gluten so wash all chicken etc first before cooking. Also if you buy chicken with a sauce often in a tin carton - NEVER use the carton to cook in - transfer the chicken to a casserole dish instead.

    I do however accidentally ingest gluten from time to time, whilst this does not affect my stomach - the amount is too small - it is enough to trigger a DH attack. What is concerning me is that before any rash appears I become very very bad tempered beforehand almost as if my brain is picking up the fact that I have had gluten.

    I do hope that this note can help your son in some way, to my way of thinking the symptoms of DH is far worse than celiac and those are bad enough.

    Just to repeat a small biopsy of the skin was enough to diagnose DH and once Dapsone is taken it is a marvellous relief.

    Good luck

    John

  • I have DH mainly on my legs, looks exactly like you pics. I've been clear of it for a couple of months. I have no idea what foods cause mine as I am completely wheat / gluten free. Complete mystery. I have been tested for ceoliac many times and its always negative. I also have thyroid issues which before treated caused me endless night sweats.

    I have been glutened at carrlucios and will never ever eat there again. Once safe foods do not always remain safe as they change the ingredients, recently caught out with a bag of crisps, once I had eaten them of course, my stomach started bloating and aching. Read the ingredients and it listed wheat!

    Poor Zac it's terrible when you are trying your best to keep him safe and well that the medical profession just don't give a damn. I've tried countless times to get help with whatever causes my DH but no testing available which is rubbish. I can see a dietician, seen two of these and they were useless, so gave up.

    Hope all goes well with the private appt and you get some positive help for a change.

  • My husband was diagnosed 8 years ago, to the point of nearly loosing his life throe dehydration ! His blood test came back negative so a biopsy is the only test that will confirm Coeliac. Our Son Andrew was tested by biopsy but came back negative. Andrew had Exma as a baby and did grow out of it unless he got stressed or drank blackcurrant, saying that he gets a rash on his shoulders, ankles down, and in the folds of his elbows that looks exactly like your photo, we still don't know what kicks it of, but I feel it is diet and stress, he is now 23.

  • Thinking about it the Food Hospital on Channel 4 a couple of weeks ago had a little boy with horrendous scratching and irritation a dairy free diet helped a lot. If I were you i would go back to your Doctors and insist on a biopsy. If diagnosed this way you will be entitled to a lot of produce on prescription free of charge that is not available in the shops to buy, and of course the cost. I have found that Aldi sell a lot of food that is Gluten Free ie some burgers etc, their chips are good to, just read the label on everything you buy there is more out there than you think that just so happens to be Gluten Free therefore you are not paying a premium price for it. It took my husband 8 to 12 weeks to even begin to recover after his diagnosis, so a change in diet is no quick fix it takes time for the bowl to repair itself. hope this may be of some help to you, but most of all DON'T be fobbed of. xx

  • i have a little rash like that on my butt some times it iches a lot then goes away for a while but dosnt spread its horrid when it starts only had it 6months xthiught i had been bit at first

  • I agree with others here --get it diagnosed properly, mine depends on the severity of my glutening-from just very itchy elbows and knees to massive fluid filled blisters on my arms, legs, bum and head( at least 3" around) and the roof of my mooth has enormous blisters on it.

    it may be that he has been glutened from a hidden source but if he has not he has another problem and it needs care. i hope he gets better soon and that you can control this newbie

  • Hiya,

    Would love to chat to you more about what you've been going through as my daughter is 14months old and we've had 12 months of her life battling the NHS and living a life of upset having to watch our baby screaming with agony as she rips her skin to shreds due to fiery rashes all over her body in response to having different foods. She is dairy free, gluten free, grain free, and many others! We did go privately in the early days which helped us temporarily and we have finally got an appt with the allergy clinic in NHS next month (the amount of pushing ive had to do get to this point is unbelievable!).

    I cant help you with your question but i can certainly say i feel for you and know exactly what you are going through and of how upsetting it is. Keep battling and dont allow the profs to stop you from finding an answer. Would be interested to know how you get on with your appt.

    Take care. sarah

  • DON'T GO TO PRIVATE MEDECINE FOR TWO REASONS. 1/ you need aeons of tests and privately they cost the earth. 2/ these days chid protection like picking up kids with poorly defined illnesses and accusing their parents of fabricating them - using private medecine leaves you wide open to this. THERE IS PROBABLY AN UNDERLYING CAUSE AND THAT MAY LIE IN ENDOCRINOLOGY RATHER THAN ALLERGY OR IMMUNOLOGY. Where in the UK are you?. If you are in or near London or further south I have suggestions. Find Parents Protecting Children UK on Facebook and message me so we can talk more privately. My daughter is older but also gets these spot/bumps often as a warning of a coming angioedema attack, One current working hypothesis is that she may have Mast Cell Activation Disorder which could explain multiple allergies and other symptoms. You most definately need the might of the NHS to sort this out - the £280 would be a waste as you will get nowhere in a single consultation. Jan LB.

  • I'm absolutely horrified at you putting this post up. Going privately does not put anyone at risk. My experience is that I've just been transferred onto the list of my chosen consultant after an initial consultation, which at it's worst is playing the system. Exactly the same happened for my daughter when she was small.

    Child protection agencies pick up on children who have a myriad of problems and certainly not just ones who have visited a doctor practising in the private arena. They have to have reasons to be there and to have been notified either by a doctor or an educational establishment.

  • My experience through Parents Protecting Children UK is that child protection teams don't believe any private diagnosis and that parents of children with multiple allergies and unexplained illnesses are at enormous risk of entanglement in child protection and family court procedures.

  • A week later and it got worse. Yesterday we went to the doctor as he was in agony and it had swollen and was oozing pus from two separate blisters. They diagnosed a large abscess!!!!

    The doctor I saw was visibly shocked and asked me how it looked when I showed it to the doctor last week. I know she would never say it but I could tell she agreed with me that he should have had anti-biotics then and it should never have been dismissed as something viral!

    So now my beautiful boy has been prescribed very strong anti-biotics which are foul tasting and have already started to upset his tummy. And yes, I did ask the pharmacist if they were safe for a dairy and gluten intolerant child and he said 'I am pretty sure'.

    I am furious for so many reasons. It should never have got to this. When a child who has been diagnosed as 'atopic' presents with skin blisters and chronic itching, it seems surprising a doctor would not think there might be some connection. When anyone presents with an obviously infected wound of any kind, it is pretty risky to dismiss it as something that does not need treatment. I don't know how close we could have been to blood poisoning but I do know that the doctor we saw yesterday went pale as soon as I showed her his arm. Without saying anything she actually went into first aid mode, dashed to a sink, scrubbed her hands, grabbed some 'stuff' and told me we needed to squeeze out as much of the pus as we could asap. I had to have him in some kind of firemans lift style rugby hold while she grabbed his arm and squeezed with all her might. You can imagine the screams. It still makes me go cold just thinking about it.

    I just thought I would share this. I don't ever want anyone to go through this. I don't know if his blisters were caused by DH. But I do know that an abscess is not normal in a 3 year old.

  • that is awful...the poor love.

    The trouble with an absess is that they can crop up as soon as there is broken skin and bacteria gets in and with young children......I would use this as an opportunity to have them try and push your appointment through with the skin specialist.

    Is there any chance you can always see this doctor? Unfortunately there are some docs who seem to think that mothers fuss too much......far better to be on the fussy side I say than not bother!

  • the poor little man, I hope you get it diagnosed and helped really quickly, young children do really badly with infections especially ones who are not totally healthy in the first place.. fingers crossed he gets well soon--- keep us updated with his progress.

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