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Hi Everyone,

My original posting was regarding a comment that was made on the list saying
that if an individual has DH, they will not test positive for Celiac.  I
disagreed with this as did all of the people who wrote back to me.

Four people wrote back to me saying that they had positive tests for both the
skin biopsy for DH and by the  intestinal biopsy for Celiac. One individual
thought her rash was a reaction from penicillin, but after being biopsied for
DH, was referred to a gastroenterologist who also biopsied and found Celiac.
Another individual had been put on Dapsone for 20 years for DH and almost died
before being diagnosed with Celiac.  He now has a dysfunctional digestive
system which is caused by strictures.  He recommended Michael Marsh's book,
Coeliac Disease, which mentions that untreated DH can lead to strictures and
Dapsone only controls the rash and does nothing for the damaged intestinal
tract.  As further proof of the link between DH and Celiac, another individual
was put on Dapsone for 38 years for DH and nearly died after becoming "skin &
bones." She saw a gastroenterologist, who told her if she was taking Dapsone
for DH, she had Celiac disease.  It took six months to completely get off the
Dapsone after going on the GF diet and she is very thankful to the doctor who
finally properly diagnosed her.

One individual who had a terrible itchy rash which was biopsied with no
diagnosis, later developed Celiac disease which was diagnosed through
intestinal biopsy and after going on the GF diet, noticed that her rash
disappeared.  Another individual suffered for 30 years before being diagnosed
and recommended reading the summary done by Jim Lyles in the Sprue Nik Press
(March 1995) of Dr. Joseph Murray's talk on "Celiac in the 90's".  I had read
this before and Dr. Murray says that "all DH patients also have Celiac
disease, whether they realize it or not."  He also finds it distressing that
most DH patients are prescribed Dapsone and are not put on the GF diet which
puts them at risk for developing lymphoma later on.

As far as my story goes, I was diagnosed just by chance.  I went to see a skin
doctor for a mole on my back and mentioned the rash that I would get
periodically on my elbows and knees.  He told me to come back when the rash
returned and he would biopsy it.  A few months later I returned to him with
the rash and unfortunately, he did not do the biopsy correctly, and the
immunofluorescence test came out negative.  He recommended that I see another
skin doctor who did these biopsies all the time which I did and this time the
biopsy came out positive.  From what I understand the biopsy is more accurate
if taken just to the side of the lesions and from the elbow rather than the
knee.  Anyway, this was the diagnosis I needed to go on the diet and I did for
two years.  After two years, I decided I wanted to know if I also had Celiac
and I went to a young gastroenterologist who diagnosed me with subclinical
Celiac sprue by intestinal biopsy after I went on a gluten challenge for nine
days.

As I said before in my original posting, it was important for me to have the
Celiac diagnosis as it made me more compliant with the diet.  Since my rash
was mild and my only digestive complaint was occasional nausea,  I really
debated over going on the diet as it was almost worse than my symptoms.  Now,
of course, since I know the real reason for the rash, I am extremely happy
being on the diet as I know in the long run, it will be worth it.

Thanks for listening,

Barb from NE Ohio