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Matthew Johnos wrote:

>I have been diagnosed with dermatitus herpetiformis for five years, not CD
>and although I have not seen any letters on this topic, I thought there
>still might be some readers who also have dermatitis herpetiformis

My son is diagnosed dermatitis herpetiformis (DH), nine years old, and it
took us about six years !! to get DH diagnosed. From the moment he was "off"
the breast (sorry for my English - I am Dutch), we had trouble: diarrhoea,
high fever, vomit, skin blisters, etc. When he was five years old the
blisters become more and more. We have been to a lot of docters, children
hispotals, a lot of them said the boy was over-sensitive, especially for
insect-bites (which is absolutely true), but only two years ago a
dermatologist did a skin biopsy, and diagnosed DH. Since then he is on a
glutenfree diet, and does NOT need any dapsone additionally.

>        First, I take 25 mg of Dapsone a day because of my gluten
>intolerance.  I am told that this is about 100 mg less than some people
>which is good because it has side effects.  Why do I need to take the
>medicine though if I am on a gluten free diet?  I know it helps because if I
>go 2 days or sometimes even one day without taking it I develope a rash. Why
>is this?

I have a copy of a study, performed in the university of Helsinki, named:
"dermatitis herpetiformis, genetic aspects and gluten-free diet treatment",
by T. REUNALA, department of Dermatology, University Central Hospital,
Helsinki, Finland, where is written:

(study based on 226 patients with DH):
"The effect of gluten-free diet (GFD) treatment on the skin was studied in
81 patients by observing the daily dapsone requirement. <...> The clinical
response to a GFD was clear. 93 % of the patients were able to reduce the
dose of dapsone and 28 % were able to stop it completely. <....> The
response correlated with the duration of the GFD treatment: after one year
on a GFD the patients needed on average about 40 % and after 3 years about
20 % of the dose of dapsone required to control skin symptoms at the
beginning of the diet. <...> The elimination of gluten from the diet is a
valuable form of treatment for patients with DH. Almost all patients respond
clinically to this treatment but the TIME required to a response VARIES from
one patient to another."

>Second, when I have a rash and I scratch it, it gets worse. I can
>understand that this might make it take it longer to get better, but why
>does it make the rash become worse?

I am not so sure, but my wife said that our dermalogist told us that
scratching will "infect" neighbouring skin.
I quote the above mentioned study:
"Histology: The histological picture of an early lesion consists of the
dense accumulation of neutrophils and some eosinophils in the dermal
papillae, producing what is called papillary microabscesses. These are
filled with tissue fluid. Neighbouring papillary vesicles coalesce to form a
unilocular bulla. The epidermis forms the roof of the bullae. These are seen
macroscopally as small blisters."

This is a bit abracadabra for me, perhaps it of use to you (and others).

I 'd like to know if more list members are diagnosed DH, and if so please
provide some info about DH itself, or mention some recent studies, etc.

Thanks,
Bert
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Bert Pleijsier
e-mail [log in to unmask]

Organisation : National Aerospace Laboratory NLR, the Netherlands
tel. +31 5274 8328
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