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From:
Pat Heidt <[log in to unmask]>
Date:
Sun, 18 Oct 1998 06:02:43 -0400
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<<Disclaimer: Verify this information before applying it to your situation.>>

Thanks to all of you who responded to my question about DH.  You have
given me a much better understanding of the variations of the rash.  I
thought I was gluten free but my rash continued to get worse (although
nothing like the classic description).   Then I discovered that two
supplements i have been taking have starch in them, so that is probably
the culprit.

Here are some of the responses I received.

*****

I have DH, I get a rash, and it has blisters sometimes. If mine itches and
I scratch it, then, yes it is bothersome and itches worse. If I leave it
alone, then it is not as bothersome. It mainly bothers me around my waist
line or if I get hot, like this summer, then it tends to bother me more.  I
got into some gluten this weekend and the celiac portion is bothering me
worse than the dh. I am having mild bumps, and little itching, thank
goodness.

*****

Yes. I am a biopsy diagnosed Celiac, but my DH has not been biopsied and my
rash does not conform to the classic descriptions, except for being
symmetrical and following the course of itchy blister to scaly rash.

Mine runs symmetrically down the outside edge of the index fingers,
continuing up the inside of the thumb. It begins with itchy blisters (not
unbearable, but certainly itchy enough to prompt scratching) which become
peeling scales, sometimes with angry red cracked skin, before they heal.
The blisters appear a few days after a gluten episode.

For 20 years before I was diagnosed, I had the rash on and off, esp. during
the summer for some reason. A few months after the diagnosis and going
gluten-free, I noticed one day that I hadn't seen it in quite awhile.

In the absence of a specific DH diagnosis I can not be 100% sure that is
what I have, but I'd be awfully surprised to discover it is not. And given
the wide range of symptomatic reactions to gluten (not just in kind, but in
severity) in diagnosed celiacs, it seems reasonable to conclude that there
is a wide range in DH, too.

It also seems reasonable to assume (and not at all surprising) that the
people who have the most trouble are the ones who seek medical help and
thereby establish in medical minds the characteristics of the condition and
the benchmarks for diagnosis.

******

My DH rash was itchy, but not the end of the world, like some describe
it. My dermatologist tells me that before it was discovered that Dapsone
controls DH, people actually killed themselves because of how itchy DH is.
I certainly never felt that itchy!!

*****

When my rash appears -- usually more on my upper arms between the elbow
and shoulder but also sometimes on my fingers, hairline at back of neck,
fingers, knees, and even on top of my ears and once inside my ear canal
-- it starts out as merely a red spot, progressing to a very tender red
bump.  But my rash NEVER itches, it only becomes very tender to the
touch. If I don't scratch off the top of the bump and let the fluid
drain, then the spot stays tender for a much longer period of time.
Scratching off the top seems to eliminate the tenderness within a few
hours. So far, I've never found another DH sufferer who does not have an
itchy rash.

*****

I have been GF for 8 months.  I believe I had DH in the 1980's and the
doc's misdiagnosed me.  I did not have lesions but the itching was
horrible.  I now have been getting a bright red rash almost like a sunburn
which itches a bit then peels.  I don't know what it is and I do think I
try very hard on this diet.

*****

The description that you just gave is the classic symptom usually given for
DH, but like CD it does not allways ack the same.  Look in the arkives for DH
Survey 97 and read the whole thing and it will give you a better prospective
of the condition.  There will be the survey and then a referance to the
actual replys, read all of them.  This should help, and it also brings out
things that I have not read in more athoritive writings.

*****

I am biospy proven DH.  The rash is better once i went on the gluten free
diet.  I was on dapsone for a few years before I went on the diet.  It sems
the more gluten that is in your system, the worse the itching.  I have always
said I was one of the lucky ones as my breakouts and itchiing are not that
bad.  Since I've been on the GF DIET, I very seldom break out, unless I do a
bunch of cheating.

*****

I am always cautious as the non-celiac parent of a celiac in giving advice,
but from what I can tell, my child's DH never bothered him at all.  It just
looked awful.  No itch or pain unless his celiac symptoms which were terrible
prior to diagnosis were so bad the DH feelings were minimized.

*****

I get a similar rash to DH, but not the classical symptoms.  I get red skin
which itches and almost boils - like bad acne which never comes to a head,
but itch for the first little while, then hurt if they get touched.  These
usually happen around my jawline, cheeks, or back if I accidentally ingest
gluten.  My initial reaction is to be really itchy all over, but the actual
more permanent effects show up on my face and back.  I was told this is a
form of DH, just not one that is treatable with drugs, so don't make any
mistakes!

*****

My husband was diagnosed with DH in June of this year.  He developed a rash
on his eyelids first.  Then it was onto his elbows, knees, buttock, and
finally his head.  The rash was a little itchy first, but the rash developed
into clear blisters.  This caused him a burning sensation.  In all reality,
his skin looked like it had been burned.  After the dapsone, gf diet, and
steroid cream, he is doing just fine.

*****

I had the rash about a year before i was diagnosed Celiac and it almost drove
me crazy i still have scars ,now it comes and goes but never gets too bad.  I
try to head it off with Claritin which works very well.  i like the readitabs
best .

*****

My response is yes.  My son has DH and CD.  He itches the most in the
blistered state.  He tends to have the irritating rash and eczema
continually.  It is under control.  When he has gone through blistering
stage, it takes months to heal.  GF is the key.

*****

As I relayed on my recent post on DH and Celiac, my rash was considered mild
for DH as it occurred cyclically for 20 years and when it occurred (either on
my elbows or knees sometimes both), the area of lesions was about an inch
across.  It would not itch all day but usually would wake me up at night and
disturb my sleep.

*****

I will be interested in the responses you get because I, too, have had a rash
(sometimes with blisters--but usually not) over the years that *I think* is
DH but have never had a biopsy for DH.  Mine, too, does not seem as bad as
they have recently described it.  I was biopsy-diagnosed for celiac disease
last September and have been on a g-f diet since.  However, I did not get rid
of the scalp irritation and hairline rash until I quit using the shampoo and
hairspray that had wheat in them.  I also have had other types of rashes that
I believe were related, and I continue to have a spot or two of itchy rash.
(This concerns me because I really don't know if or when I do ingest gluten
because I don't have noticeable symptoms.)  Another strange symptom that I
had, which is finally gone, is an intense itching at the back of the neck
with no rash.  I would wake up at night with this intense itching.

*****

The way you describe DH is absolutely perfect.  There is no itch like it, I
thought I was going to go out of my mind.

*****

Yes, mine does itch, but not to the extent of what I have read about dh.
Mine is on my buttocks and it comes before I have any intstestional problems.
Knock on wood I have not had an attack for at least a year.I had this
probably 20 years before I really knew what was the problem, and only after
my gi asked if I ever had any rashes as such.Wonderful I finally knew what
the problem was,and that was in 1990.

*****

I have been battling a rash ( or rashes ) for several years.  Sometimes
the itching is almost unbearable. Sometimes not so bad.

When all is said and done, it looks as though I have two causes of the
rash.  One is Gluten.  The other is Yeast.  The yeast rash seems to be
the one that is the itchiest.

In talking to my wife about the itching and yeast infections, she
informed me that there is no way to ever mistake the itching of a yeast
infection once you have had it.  Need I say more???

*****

I'm glad to read your post.  I am not diagnosed with DH, haven't even pursued
it because my rash is so mild, and I am also not diagnosed with celiac.  My
son is biopsy-proven celiac (8 years now).  At age 11, he is doing well.

I get many of the symptoms of celiac if I eat any gluten at all.
Unfortunately, I was tested after having been gf for a few weeks (blood) and
a few months (biopsy).

I've noticed that when I oops with gluten, I get a few itchy spots above my
elbow, and sometimes at the top of my thigh in back.  They itch, I scratch,
then I notice them, then they ooze and crust, then they go away.  They are
not many, not awful, not symmetrical.  But I am quite certain they are a
gluten response.  Oh yes -- I have also had them near my wrist, on my arm.

The whole process takes about 5 days.

*****

Thanks again to all of you who took the time to reply.  Much appreciated!

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