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I would like to thank you all for your responses to my questions about
Dermatitis Herpetiformis.  I received 37 responses and a few web sites
which I will add to this letter for those of you who have asked me to
summarize the information that I received.  I am not sure if the rash is
caused by an allergic reaction to wheat or a auto immune reaction to
gluten yet but someone sent me a web site that described a test that a
doctor or dermatologist would do for DH.  It involved dropping iodine on
the skin to form a blister for the doctor to test.  Being a adventurous
person, I tried the test with regular iodine found in a drug store.  I
know that it is not the iodine that I am allergic to because I used it
alot as a child on scrapes and cuts.  I was amazed at how fast my skin
reacted to the iodine.  Within two hours it had swollen and by the next
morning there was a itchy bump.  Still not proof positive by any means
but it was interesting.  I tried the test on my children and husband and
nothing happened so it does indicate that there is something different
about me that caused such a quick reaction.  Many people said that the
doctor could have tested the rash to find out what it was...I asked and
he refused.  I would change doctors but he is actually the best in the
area.  I may decide to make the four hour trip to see a Dermatologist
eventually but for now I will wait to see what happens when I go back on
the gluten free diet again.  Here are a few of the responses:

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On this Celiac Forum:  http://forums.delphi.com/celiac/messages it is
stated that you have to go to a dermatologist and he will take a sample
of DH and analyse it. If it is DH, you dont need to go through an
endoscopy, as you automatically are Celiac. Ask to Abigail there or
Chris.

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It appears as a raised bump sometimes with a small red dot in the middle,
not quite blister like, but it is ridged and INTENSELY ITCHY...  In fact
it is SO itchy that when it is scratched until raw and bleeding it feels
better.  If the bumps are allowed to mature without scratching them off
(THIS IS VERY DIFFICULT TO ACCOMPLISH) they become very painful and still
itchy at the same time...

So in my opinion it is better to scratch them off.  Unfortunately doing
so increases your chances of skin cancer.

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The best pictures I know of DH on the net are found at:
http://www.dermis.net/bilddb/diagnose/englisch/i694000.htm These
pictures are quite graphic. DH can cause insane burning, itching, or
both. Although there are some classic areas, it can appear almost
anywhere.

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Below is an article by Dr. Papp.

Dermatitis Herpetiformis,  Dr. Kim Alexander Papp Dr. Papp is a
consultant at St. Mary's, Grand River, and Listowel Memorial Hospitals.
He is also President of Probity Medical Research Inc. The first mention
of Dermatitis Herpetiformis (DH) in the literature was in 1884 in
Dhring.  The connection to wheat was made in Dreke, Holland in 1941.  It
is an uncommon, but not rare, disease that affects males twice as often
as females.  It is found in 10% of first degree relatives.  There is a
genetic association; 90% of DH patients have HLA-B8 vs.  only 15% of the
general population.  HLA-DRw4 and HLA-DQw2 are also associated with some
DH patients. DH normally is found on elbows, knees, shoulders, buttocks,
sacrum, posterior scalp, and face.  While it is unusual, it can also
show up on the hands or inside the mouth.  It presents as clear blisters
that itch very badly.  [One patient described the itch "...like rolling
in poison ivy naked with a severe sunburn, then wrapping yourself in a
wool blanket filled with ants and fleas."<1>-ed] The original diagnosis
of DH was done by giving Dapsone, a leprosy drug, and noting any
improvement.  Today, the "gold standard" for diagnosing DH is a skin
biopsy with immunofluorescence. (A plain skin biopsy is not
sufficient.)  Most DH patients also have villi damage in the small
intestine and lymphocyte infiltration of the intestinal wall, and
IgA/IgG antigliadin antibodies in the bloodstream. However, there is
really no need to perform a small bowel biopsy or test for blood serum
antibodies; the skin biopsy with immunofluorescence provides a
definitive diagnosis. Dr. Papp indicated that about half of his patients
are diagnosed after having their symptoms recognized and pointed out to
them by other DH patients. DH is not an allergic reaction; a different
mechanism is involved.  It is caused by antibodies to the gluten found
in wheat, rye, and barley. The causes of DH flares include large
quantities of iodides (some iodine is needed in the diet), kelp,
shellfish, non-steroidal anti-inflammatory agents (such as aspirin),
gluten, stress, and some cleansers. What else looks like DH?

*  DH can be misdiagnosed as psoriasis, or the patient may have both
conditions.

*  Linear IgA disease--the immunofluorescence pattern is different, but
it looks and feels the same as DH to the patient.

*  Allergic contact reactions. DH is treated by adherence to a
gluten-free (GF) diet.  The skin lesions
can be treated with either a sulfone (Dapsone) or sulfonamide
(Sulfapyradine) drug.  In about 85% of the cases, at least a year on a
strict GF diet is needed before DH is resolved.  In rare cases DH
lesions clear up after only a few weeks on the GF diet. Dapsone can have
side effects, though these are not common.  It can alter blood
chemistry, causing anemia.  Those of Mediterranean or African ancestry
can have sudden red blood cell count drops [known as G6PD
Deficiency--Dr. Alexander].  Other complications include tingling
fingers and neurological problems. Ideally, if the patient is on
medication there would be monthly lab tests to monitor the dosage and
effect on the patient.  This almost never happens. The GF diet takes a
long time to bring DH under control because it requires time to clear
the IgA and IgG from the blood.  So even if one is on a GF diet and/or
taking Dapsone, technically one has DH.  Like an alcoholic, one always
has the disease. Dr. Papp concluded his presentation by answering a few
questions from the audience.

Q:  How soon after ingesting gluten or iodine will a flare occur?
A:  It varies tremendously.  With iodine, it usually takes several days
of consumption before a flare    occurs.

Q:  What effect does stress have on a DH patient?

A:  It intensifies any symptoms the patient is experiencing.
Q:  What effect does iodine on the skin have?

A:  It really has no effect; it doesn't penetrate enough.  Iodine must
be consumed to cause a DH flare.

Q:  After several years on a GF diet with no flares, is iodine still a
problem?

A:  No.

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Find a dermatologist who knows about Dermatitis Herpetiformis, DH.  Not
all of them do.  He can perform a biopsy.  It 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 is called IgA.  If an individual has DH, the
doctor usually takes a biopsy of one of the blisters caused by DH or a
piece of the skin near the blister.  Some dermatatoligists use an iodine
patch to cause a blister that can be used for a biopsy.  I have been told
that if one has DH, a pinch or piece of skin that does not show
blistering or a rash can be used.  The IgA antigen shows up in good
tissue.

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For images of severe cases see: http://www.GFlinks.com/#DH This is from
Peter Thompson's web page at
http://www.demon.co.uk:80/webguides/nutrition/diets/gluten-free/ and was
written by Dr. Joseph Murray (University of Iowa Medical School, now
Mayo Clinic): This is what my Merck Manual (16th ed.) says:
Osymmetrically on extensor aspects (elbows, knees, sacrum, buttocks,
occiput). Vesicles and papules, common on the face and neck, occur in
about 1/3 of patients. Itching and burning are severe, and scratching
often obscures the primary lesions. 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 clear 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 diagnosed 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.Too much for too 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.

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Thanks again for all of the responses. This is a great group and I am so
glad that I have had the opportunity to join. Good health to you all.
Irene Young
South River, Ont.Can.