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From:
Susan Carmack <[log in to unmask]>
Date:
Wed, 15 Apr 1998 13:10:57 -0700
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<<Disclaimer: Verify this information before applying it to your situation.>>

Hi Everyone,
Below is a long summary of replies I received in answer to my question
regarding my son's DH-like rash.  Thank you very much to all for extremely
helpful suggestions. As it turns out, he has erythema infectiosum or Fifth
Disease.  I learned from another mother of a child in his class that her
son gave it to Jesse. One sight that describes the condition:

http://www.emedicine.com/emerg/topic378.htm

It is quite interesting to learn about especially when it resembles DH in
many ways!

Thank you again for many wonderful replies.

Soy is a very common allergen as is egg yolks/whites, try eliminating
these food items, too. Soy is everywhere in the form of lecithin; eggs
can be described as albumin, etc, so please read the labels carefully.
Since it can take a week to truely eliminate allergins from the
intestinal tract, be sure and give whatever you argood luck.  Allergies
can show up in many ways. For example, my arms would literally bleed,
with my skin just sloughing off.

I was diagnosed DH (by skin biopsy) in March 1997, and have been
gluten-free since, and on Dapsone, but the spots still pop up when I eat
a suspect item ...  like Belgian chocolate.  I have also become
intolerant to my 100% Lactaid-free milk.  I think Dh stays in the skin
forever just waiting for me to slip up.

My daughter also had some recent DH looking type of rash (back) she could
have accidently ingested gluten we are not sure.
I put cool compresses on her back followed by bactroban , before bed I put
tea tree oil on .
In 2 days days her back looks way better!
My daughter is now off gluten/lactose/casein/htdrogenated fats and we also
are very cautious with sugar as she has diabetes as well.
We avoid soy as well. She drinks Darifree by Whytes which will soon be
available in the Staes, it is an excellent milk replacement!

It might be a good idea to get a book from the library about
elimination diets. That will tell you to start with one food (usually
rice) and feed only that for three days - with pure bottled water. Then
add lamb, and feed only lamb and rice for three more days. Continue adding
one food at a time until you come to things that cause symptoms. Drop that
food and as soon as symptoms go away, add another food, etc. It is time
consuming, and perhaps the little boy is too small to be taken all the way
back to rice and water, but you must know a few things that seem to be
completely safe and can start with those.

Going gluten-free for my CD did not mean I could go off the dapsone for DH.
Although the diseases are related, they are not one and the same. I did
get to decrease my dapsone to 50 mg a day, which is usually low enough to
avoid the problems dapsone can cause. I have been on dapsone for 18 years
without problems because of this low dosage. I only have a rash if I goof
on the diet now.

You need to find a dermatologist who knows about Dermatitis Herpetiformis,
DH. Not all of them do. He can perform a simple biopsy of the 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 used by DH patients. It is the miracle drug that is the
cure for Leprosy. It's use by DH patients does not cure. It just masks the
problem. I would not recommend it. 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 many DH patients
are 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.
A cool wet cloth applied to the rash helps relieve itching. A steroid cream
is often used. I don't know how safe a steroid cream would be for a child.
After using many steroids, I have found that Psorcon Ointment is the best
for the itching relief. I am using a mixture of Psorcon Ointment with an
antibiotic ointment called Bactroban.
You should also be aware that an iodine patch was once used, and some
doctors may still be using it, to determine DH. The patch would cause
blistering of the skin and this indicated DH. DH patients should avoid
iodine applied to the skin. Most hospitals and doctors to clean wounds use
iodine solutions. Also, many DH patients are not aware that iodine ingested
may cause flair ups. Sea salt, iodized salt, ocean fish, yolk of eggs,
multiple vitamins with iodine, and many other non-gluten foods containing
iodine may cause skin flair-ups for those with DH.
I have additional information. Please let me know if you would like it.
I hope this helps.

Howdy! I was diagnosed with DH over a year ago, and still have
blisters. If it truly is DH (a skin biopsy can be done to confirm
this rash), in my reading, it can take as much as 2 years for the
blisters to finally go away completely. It also can take two or more
weeks for the blisters to form after eating something containing
gluten, so what that means that if he had an accidental ingestion 2-3
weeks ago, his intestinal problem would be over, but the skin would
flare up. I have never tried teatree oil for them. I have tried
almost all otc and a couple of prescribed topical ointments and found
they don't work worth peanuts. One thing that works for the short
term are cold compresses on areas that are particularly irritated.
They also usually get worse and then get slowly better. Hope any of
this helps.

Susan, I am writing from Italy also I have DH and, nevertheless the dapsone
and the diet, still I have what your son has (itch and rush).  But why you
want to eliminate other food to your son such as dairy, peanuts I mean on
which basis ?  Unless you have done some intolerance tests..  Don't you think
he has already lot of food to avoid?  For what I know the villi of the gut
could be recovered (that is the important thing) with the diet but for long
time DH problems remain under the skin.  At least this is my knowledge of the
DH.

Your son's rash is in the right places for DH but if he has been gluten free
(it must be very strict) they should not be appearing.  When I was diagnosed
with DH by skin biopsy, at first I would get lesions if I accidently ingested
gluten usually 1 to 2 days after but after being gluten free for 2 years,
during a recent gluten challenge, the rash never appeared as the skin
deposits eventually dissipate.

I read your post and would like to share some info with you that I got from
another reader. I wrote the list because although I am gluten free, I have
D.H. Blisters after drinking a mixture given to me by my Dr. for a Colon
Scope. I received mail from several individuals stating that an increased
intake of sodium could set off your D.H. The solution that I drank was full
of sodium. I was advised to refrain from excessive salt, and egg yolks. I
am trying to find more info to support this but maybe it could help you.
When I find out more on this subject, I will let you know.

If it is DH,a dermatologist should be able to tell if it is or as I had,
a case of poison ivy which I hadn`t contracted since childhood.
What about toothpaste,playdough,licking stamps,paint products when doing
projects etc?

Try something without salicylates as that is also a common allergy. Tea
tree oil, aloe, most things, are very rich in salicylates. Anything with
menthol or mint too.
Anyway, try something without -- that could be the problem. there's a list
of salicylate-free products on one of the lists dealing with fibromyalgia
and guaifenisin.

Just found your note. someone suggested Calendula oil to me-

Hi. I also have bumps, but I swear they are from potatoes, right now. I've
eliminated a whole bunch of other foods, which I think also caused them,
besides gluten. I've since added back most foods, but it's just the potatoes
so far that have caused the return of the bumps. Pretty frustrating to figure
out what's left to eat. Don't know if going off potatoes for several months
will eventually make them go away or not, yet. Sorry I couldn't be of more
help.

Today all that is noticable on Aliciia's back are discoloured splotches!!!
We always keep tea tree oil, and bactroban in our home, In Canada Bactroban
used to be a prescription drug unfortuetly it is now an "over the counter"
costs about $25. for the small tube , but if it works it is worth it eh?
Best wishes to your son it is hard trying to find out what foods/by products
cause the trouble eh? I tell ya we get mighty rattled when we visit
relatives and they think we are wakko cause we don;t let our kid eat
whatever she wants, I guess you gotta live it to understand

After many years, I have come to the conclusion; Use everything fresh if
possible. Trust no one or anything. Buy only items that state on the label
gluten-free, and then, even be careful. Even frozen foods (beans, corn,
peas, berries, etc.) contain dies that have been derived from gluten. Salt,
pepper, and the other spices contain a gluten product to make them flow and
protect them from condensation.
Until recently I thought rice was safe, but now I find that gluten is used
in the enrichment process.
Most of the celiac groups have published list of items from companies
stating that the items are gluten free. Do not trust these lists. They are
usually derived from a telephone conversation with a person who has no idea
of what gluten-free means. Many times letters are sent to companies asking
for their gluten-free items. However, the companies state that they may
change ingredients as necessary and that the consumer must read the labels.
Many times the labels are wrong.

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