<<Disclaimer: Verify this information before applying it to your situation.>>
My profuse apologies for not getting this summary out earlier, and my
thanks to everyone for responding to my DH questions. Sorry this is so very
long, but I found so many of the responses to contain so much information
that might be informative to anyone wondering about DH!
As you will notice there are several answers that are directly
contradictory to one another; maybe an expert could address and resolve
these issues?
My own rash went away within a week, far too soon for me to get an
appointment with a dermatologist thru my HMO :) so I don't know if that's
what it was or not. I still have occasional itchiness that might or might
not be related to the rash I had.
Carma in Phoenix (US)
[log in to unmask]
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THE QUESTION:
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About 5 days ago I noticed a bumpy rash on my inside right wrist.
Next day it was on my fingers also, and the inside left elbow. Then my
scalp and ears started itching. I have had a few bumps on my hairline,
behind ears, on back of neck, but mostly it's just itching on my head and
ears. Also itching on my knees and elbows and even my face (cheeks and
around nose and upper lip, even eyelids and eyebrows), with just a couple
of bumps or no bumps in those areas. A few of the bumps looked like
blisters, but none have broken open or oozed or bled.
The rash is not perfectly symmetrical - right wrist and hand, left inside
elbow. But the itching itself is pretty symmetrical. Also, it's not a
burning itch or particularly intense, but it is definitely and persistently
itchy.
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THE RESPONSES:
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1. Does it sound like this could be DH?
* Yes (3)
* DH has red spots, blisters which scale and leave
a darkish red patch on the skin. They are usually
symetrical, on both arms etc. but it may take a day or so
for the second set to pop up.
* It sounds like it could be DH. Give it a few more days and it could get
worse...As for the asymmetricalness, it doesn't need to be completely
symmetrical. I am presently pretty symetrical, but there have been times
when only one arm is broken out and the other isn't. The symmetry is kind
of a guide, but it isn't always completely symmetrical.
* My rash was on my elbows, knees, lower back and buttocks mostly, with
other scattered spots on my scalp and legs. I think these are typical
areas - never heard of it on the insides of wrists, uncommon on face, but
still could be. I had only isolated spots on legs, arms, fingers and torso
before the rash got really serious.
* It could be. I have had symptoms such as you have described. The
itching often occurs before the blisters appear, sometimes days before.
* Could be, most of my rashes were on the fingers, knees, elbows, butt,
neck and hairline and pubic area. Not all the places every time, but
usually in two or three places at a time
* I have noticed that typical descriptions of CD and DH don't always apply.
When I went on a gluten challenge My DH appeared on my chest and neck area
it looked like any allergy rash at first then got a chrust on it after a day
or two. It lasted about three or four days after I quit the gluten. It
will keep getting worse as long as you are on the challenge. More and more
antibodies keep building up and collect under the skin that is why the
itching is so bad. When I was recovering from the test I could not even use
mouthwash I would break out in about two hours.
* Typically the DH rash occurs on elbows, knees and some people other
places such as you have described. I first developed my rash 22 yrs ago
and was misdiagnosed so lived with it for 20 yrs before being properly
diagnosed.
* When you started describing your symptoms, it was like a replay of my
symptoms. I have been diagnosed with DH by a biopsy of one of those
"blisters". A dermatologist made the diagnosis. I didn't even have to have
the more expensive intestinal biopsy.
* What you describe could be lots of things. But if you get the skin
biopsy, which is done by a dermatologist, and get the IGA (I think)
immunoflouroscopy test done and it and it turns up positive then I was told
that was the gold standard for diagnosing DH. I have never had a GI biopsy
following the positive skin biopsy, nor was it recommended. I do get my
endomesial antibodies checked every year. DH blisters manifest in many
degrees of bumps- but they are textbook DH when their distribution is
symmetrical. I don't know anyone who had an unsymmetrical presentation, but
could be. You do have to have bumps when the biopsy is done. It is a very
simple, almost painless procedure.
* My husband was diagnosed with DH almost two weeks ago. His symptoms
started out as blisters around his eyes. Next, they were on his elbows and
knees. They then moved into his hairline. My husband went to our family
doctor who treated him with steroids. This didn't cure it, so he sent him
to a dermatologist. He two treated him with prednizone and a cortisteroid
cream. This lasted for almost 3 months. Finally, the dermatologist did a
biopsy on his knee and the results came back positive. We are still
awaiting the stain test and another one. (something having to do with
fluorescent.) He was given Dapsone which has relieved his symptoms
greatly. He is also on a gluten free diet. He had his first lab test this
week and goes back to the dermatologist next week for his "game plan."
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2. Are there mild cases, or does it start mildly for some people before
getting worse?
* Yes
* MY BEGAN VERY MILD AND PROGRESSED TO INTENSE OVER 1-1/2 YEARS
(WHEN I GOT THE DIAGONOSIS)
* I had a rash as a four-year -old, undiagnosed, and it did not
appear again until I was 59, though I did have gastric problems.
Since it was diagnosed, by skin biopsy, I have been on Dapsone
which keeps it at bay, but pops up if I stop the Dapsone. I am
gluten-free.
* I think that there are mild cases, but it does also kind of build slowly.
The thing with DH is that it takes a while since it is the gluten making its
way to the skin.
* I would first notice it as a sort of biting feeling, like the sting of a
mosquito, and when I'd go to scratch it I would notice a little bump there.
It went away after a few days. This went on for several years before the
bad
rash started. Once it started in earnest, it never really went away, although
it did wax and wane from week to week.
* The severity of my own case continuously varies. I can go as much as
two weeks without really being bothered (to the point of applying
hydrocortisone, which helps me).
* Can't answer, it was always bad when it broke out. I went about 5yrs
with it off & on until it was diagonsed.
* I would consider my DH to be mild as it would occur cyclically and
might only be on one elbow or knee at a time.
* It started mildly for me. I used to get a few blisters below my right
knee. I thought it was a rash or a fungus. After a while the problem went
away only to come back later.
* it sure seems to me that mine started mild - 12 years ago.
It would get better, then get a little worse, then better, until I found
a dermatologist who seems to have figure out what it is - now if she can
just figure out how to make it go away - - -
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3. How long do DH outbreaks usually last?
* For me about a week.
* MINE SOMETIMES LASTED 4-6 WEEKS
* without treatment they can last a long time. I had severe spots
for six months before diagnosis
* DH outbreaks can last for quite a while. I have read that they can be
present even though there is no gluten in the diet for 6 months to 2 years
after the initial break out period. For me personally, my body seems to
conform to that. I clear up a little bit, but I am also not completely
careful so I will sometimes break out again.
* The outbreaks usually last 1 - 2 weeks in any one location, but they
continuously move from place to place.
* Most of the time about 3-4 days as long as more are not breaking out
all the time.
* Once it started in earnest, it never really went away, although it did
wax and wane from week to week.
* My outbreaks would last several weeks before they would heal and of
course new lesions can occur after others have healed.
* At first, I noticed the blisters there for a week or so and then they
would go away. Later I started getting the "bumps" on my scalp and eyebrows.
My ears also started itching. Finally, I started getting them on my
"backside" and pelvic regions. That's when I went to my family practitioner
who told me. It was jock itch. I hadn't told him about my elbows or about my
scalp area. I guess I thought they were not part of the same problem.
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4. Is it common to have the itchiness without the rash or blisters?
* Yes (2)
* PROBABLY, MAY NOT SEE ACTUAL BLISTERS IF THEY ARE VERY TINY
* I was dianosed with CD 22 yrs ago, but have not been told I have CD even
though I have a non-itchy rash on my chest which gets redder when I
accidentally ingest gluten.
<I assume the poster meant to say DH once instead of CH twice.>
* I don't know; the itchiness can start before the blisters appear.
* The itching often occurs before the blisters appear, sometimes days
before.
* Yes, that's how I know I have it comming on - then I take a dose of
"dapsone" and stop it before it gets too bad.
* I generally did not have itchiness without the rash and this might be
more indicative of an allergic reaction.
* Yes, occasionally I had the itch on the back of my hands and wrists
without the blisters.
* if yours is like mine, there is something that feels like
bugs crawling under the skin in places where there is no rash at the
time. Many times a rash would start there later though.
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5. If I have a skin biopsy and DH is confirmed, and I then skip the
internal biopsy, will that "count" as an official CD diagnosis (for tax
purposes, etc.)?
* Don't know. (2)
* NOT SURE, HOWEVER, IT IS A MEDICAL DIAGNOSIS
* Yes! DH will only show up in the skin, therefore a
intestinal biopsy would be a waste of time. The same goes for
CD blood tests which are not suitable for DH
* I believe that it should since DH is an official cd diagnosis, but I have
never tested this theory. I have never had an internal biopsy since I had a
positive skin biopsy.
* I had it for a year before I was diagnosed by skin biopsy. The biopsy
result was definitive for DH, but my dermatologist reminded me that that
meant I was definitely gluten intolerant, but not necessarily celiac yet.
I have never had an intestinal biopsy (the gastro said he didn't think it
was necessary) but had been having the gas and weight loss commonly
associated with CD, so I presume that I do have it. I honestly don't know
what counts as official.
* According to Dr. Murray, if you have a positive skin biopsy for DH
you have Celiac. In my case I was tested first by skin biopsy and two years
later by intestinal biopsy and it is true as I had moderate villi damage.
* My medical diagnosis is dermatitis herpetiformis . It doesn't say celiac
disease although the gluten free diet is prescribed for both conditions. ( I
believe that the 2 manifestations are part of the same disease.)
* a skin biopsy (according to my dermatologist) is just a
first step. If the skin biopsy points toward celiac disease, then it is
confirmed with an intestinal biopsy.
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6. Do I have to have a rash showing at the time of the skin biopsy?
* You bet!!
* DEFINITELY. THE DOCTOR BIOPSIES THE ACTUAL RASH AND AFFECTED AREAS
* No! the skin near the spots is biopsied not the spots
* There must be blisters present at the time of the biopsy since that is
what they use. They cut the blisters out and send them whole to a lab for
testing.
* The skin biopsy is done on a lesion that is just beginning, not yet
broken or scabbed over. My dermatologist sent two separate specimens to
two different labs ( it usually has to be sent out to a specialty lab
unless you live near a big medical center, and even then it is an unusual
test). Both were positive.
* In my case the dermatologist went to my shoulder, where, at the time,
I had no itching. I had blisters aplenty on my elbows and buttocks, but
she chose the shoulders.
* Yes, you must have the rash to be skin biopsied. The most accurate
tests will be done just to the side of the lesions preferably on the elbow
as on the
knee, I had a negative biopsy (it was also taken directly from the lesion).
The test is called the direct immunoflourescence test. It should be done by a
skin doctor who is knowledgeable about the test.
* My dermatologist wanted an active blister on which to do the biopsy.
* from what I understand yes for the skin biopsy you do.
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7. Is the skin biopsy a more straightforward diagnosis than the intestinal
biopsy? By that I mean, I've heard that the intestinal biopsy can be
tricky to read and requires a skilled lab; is the same true for skin
biopsies?
* A good dermatologist is required here.
* MINE WAS VERY DEFINITE
* I don't know how straightforward it is compared to the intestional biopsy.
I know that the test is an immunoflourescense test and that for me
personally I knew in two weeks positively that DH was what it was. They
find IGA in the blisters and go from there.
* I have had both. The skin biopsy a five minute office procedure. The
intestinal procedure (endoscopy) performed by my gastroenterologist showed
no damage. I guess that was because, by the time of the procedure, I had
been gluten free for 2 months or more.
* just keep in mind that medicine is not an exact science
and the health care professionals are not gods (even though some of them
think they are)
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8. Does a dermatologist have to do the biopsy or can a regular doc do it
and send it to the dermatology lab?
* A dermatologist is the one. (3)
* Find a dermatologist who knows about 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 if DH 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.
* That I don't know since I went to a dermatologist in Fairbanks, AK.
She sent it to UCSF dermatopathology service for the evaluation.
* I don't think so, but it might be better to use one.
* I assume a GP could do the biopsy as well as a derm, if he knew what
he was doing.
* My primary care physician could not take the biopsy nor could he "read"
the it. My dermatologist could do both but I understand that most
dermatologists need to send the biopsies to a lab to be read.
* I see no reason a GP couldn't do a skin biopsy, but might
not have the skills to 'read' the results nor treat it
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9. What else do I need to know before going in to the dermatologist?
* Here you have it. DH is really wierd. Some people have just the itchy
kind that shows up around the hairline, elbows, knees, buttock and back.
The itchy kind is extremely uncomfortable because we tend to scratch off
the blisters before they can be biopsied. Then there is the burning and
painful kind that sometimes goes along with the itchy kind. These
pustules are usually clustered and red around the edges and appear to be
filled with blood. This type of lesions is extremely scarring. Dapsone can
control the eruption of these pustules; Dapsone is a known
carcinogen so regular blood tests are required in order to continue the
prescription. After 14 years with DH, I have gotten the dosage down to
next to nothing. Some say that you can get completely off of the drug
but for me that has been impossible even though I have been GF for almost
14 years. My system must be just a bet more susceptible to hidden
glutens than some. It has been said that many things can set off a DH
attack, ie. stress, colds, flus, wounds, basically anything of an
emotional nature. I spoke to Dr. Kari Connelly, Dermatologist Professor
with UCSF and she said that the normal breakout locations are as I
stated, but that DH can appear anywhere it wants to and I can certainly
agree with that.
* MAKE DR. AWARE OF POSSIBLE CELIAC. IT HELPS IF YOUR DOCTOR IS AN
ACTIVE RESEARCHER, BECAUSE IF THE DR. DOESN'T KNOW ANYTHING ABOUT CELIAC,
AT LEAST HE WILL BE CURIOUS AND INTERESTED IN RESEARCHING IT.
* Tell him/her you think you are gluten-intolerant and would like to
be tested. Don't be too specific about celiac disease tho... some
doctors think CD and DH are separate conditions
* I was diagnosed first with ringworm, then scabies (both by my family
physician), then finally with DH by the dermatologist after the biopsy.
* I would recommend getting the intestinal biopsy as this is the
convincing test that you have Celiac and will convince you to adhere to the
diet. I was glad I had both tests.
* I would suggest that you don't do what I did. I omitted some of my
symptoms. I didn't think they were relevant.
One more thing.... Dapsone is often prescibed for this condition. It has
some serious side effects and is difficult to "get off". There are other
medications to relieve the DH symptoms. The medication does not cure the
disease, it only relieves the skin symptoms. In the mean time damage can be
going on in the intestines. The gluten free diet is the only thing that
really works.
* How much money is in your checking account - - -
* I write just in case your rash is not DH. I had a rash develop two
years before I was diagnosed with CD. It is an eczematous condition
that I was informed was unrelated to CD. WRONG! One year after my
diagnosis of CD my rash is almost gone. I get some of the item you
describe, but then again I have had this rash pretty much all over my
body, from head to toe (heel really) and back again.
Anyway just in case your rash is not DH, there are some of us CDers
that just simple suffer from an eczematous rash, that hopefully goes
away on the GF diet.
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