<<Disclaimer: Verify this information before applying it to your situation.>>

Regarding Dapsone & DH:

* Some found Soap, Dishwashing soap, shampoo & bubble bath to be the
gluten containing *culprit*.
* Topical steroids can be used (but many found these useless)
* Atarax can be used to claer up the rash
* A bout w/ DH indicates there is a hidden source of gluten being
ingested. Go back to the drawing board and start all over with an
elimination diet.
* Keep a food log to ferret out the problem
* It can take 18 months for all the deposits under the skin to
dissipate.
* Dapsone is a powerful & dangerous drug. It can cause liver damage &
mess with your blood counts. Most gastroenterologists don't prescribe
it- will refer to a dermatologist.
* Many dermatologists have no real clue about the necessary diet to get
to the source of gluten. DH can be a slippery slope in between Celac GF
diet & an after-the-fact treatment of gluten exposure.
* One listmate took Dapsone for a prolonged time, and said it did
serious damage to his bowel system (not on a GF diet- derm. told him it
was not necessary- the dapsone would take care of it-WRONG!).
* Once on the GF diet & cleared of the DH, no other treatment other than
the gluten free diet should be necessary.
* One listmate takes an antibiotic and niacinamide (B3) when they get
these bumps, because they do hurt.
* DH can be diagnoses with a simple painless skin biopsy.
* With my DH I am also sensitive to Soy. (Soy is gluten Free but a large
number of celiacs are also sensitive to it. Soy is like gluten, it lurks
everywhere, soy sauce, cheese, fillers, etc)

*Some need to take Dapsone on ocassions due to a mystery gluten sometime
lurking in foods.
* In my opinion, if your Dermatologist is good he/she will give caution on
how to take Dapsone.  To much for to long time will really mess up your
blood, that's why you must have blood tests regularly.  There are two
other types of medications that are possible to help DH and they are a
sulphur type.  I've heard of a prescription topical cream that can also
help with the itching.  I've never been helped using these.

*As far as the areas to the body the DH effects, well it can appear
anywhere it feels like it.  This information I received from Dr. Kari
Connelly, Dermatologist with UCSF Medical at a Celiac meeting in Oakland,
California.  Normally it just shows up on the upper arm, buttock, back of
the knees, on the scalp around the hairline.  Well, I've got it in many
other places.  There are a lot of cases of eczema that are misdiagnosed
when they are actually DH.

*I am "gluten intolerant" or similar and first had skin problems with
soybean oil (lecithin specifically) before gluten.  Now, I also have
problems with most seed oils - flax, sesame, probably canola.

* Find a dermatologist who knows about Dermatitis Herpetiformis, DH.  Not all
of them do.  He (or she!)  can perform a simple biopsy ofthe skin.  The
biopsy is a simple procedure and done in the doctors office.  However, the
analysis of the biopsy is highly specialized and not all pathology labs can
perform the examination of the tissue sample to identify antibodies.  The
examination must be an immunofluorescence examination.  Many times the
pathologist may not specify DH in the lab report but just list the
antibodies.  The doctor must be capable of interpretation of the antibodies
as they relate to DH.  If done properly, this test is said to be 100%
accurate.  The antibody in the skin for diagnosis if DH, is called IgA.  The
test is usually done on the area of blistering or rash.  However, if one has
DH, any area of the skin can be used.

I suffered with the same problem for 38 years and had gone through about 60
biopsies before becoming aware of this immunofluoresence method of
examination.  I had been seen by some 20 dermatologists.  I had to tell the
dermatologist what to do.

Dapsone is the miracle drug that is the cure for Leprosy.  It's use by DH
does not cure.  It just masks the problem.  I tried dapsone as an experiment
before anyone knew about DH.  It made me very sick with severe head aches and
stomach cramps.  It is a sulfa drug and I found out that I am allergic to
sulfa drugs.  There are many side affects that go along with the use of
dapsone.  Make sure you get all of the information first.  Some of the latest
literature states that once on the gluten free diet, the average length of
time for the blistering of the skin to clear-up is 7 years.  However, the
length of time may vary between several weeks up to 16 years.  I have found
that any kind of stress on the system ( a cold, flu, cut, ect.)  can cause a
flair-up.

*The gastroenterologist we had at our support group meeting last week
did not have a clue about DH.   If she has a skin problem, I suggest
a dermatologist.  At least they can do a biopsy which a
gastroenterologist does not do on the skin.   It may be a reaction to
corn.   Many persons who are not CD have a similar rash to corn.
Does it itch?    A gastroenterologist will not prescribe Dapsone as far
as I know because it is out of his (or her) area.   Only dermatologists
will do that as they know how to follow
it.

>>>>Thank you all for your detailed & informative responses. My co-worker
was SO happy to get 3 pages of info from you. (now I've got a 4th page to
add!)

Fran Oregon US of A
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