DH Surveys 1997
The following surveys were used to compile the survey which was posted to
the list. I feel that there is a certain value to each survey in its unique
character, and given the scarcity of information in this area felt that they
should be filed. Also there were certain statements in some of them which
were of value but could not be incorporated in the survey as a whole.
James A. Doubravsky Riverside, CA. JA-BCD@Juno.com
~~~~~~~~~~~~~~~~~~~~~~~~~~~~1.
1. How long have you been diagnosed with DH? 7 years
2. If not officially diagnosed, how long do you believe you have
had DH? 8 years
3. How long did it take to diagnose DH officially or otherwise?
8 months
4. What were the first symptoms associated with your diagnoses?
Horribly itchy small blisters only on knees, elbows, lower
back/buttocks that would only cease to itch if scratched open.
5. Are you on a GF diet? Yes
6. How long have you been on a GF diet? 8 months. But have
been on it before\ twice once for 3 months and once for a year.
7. How would you rate your diet? Very strict...... Some what
strict..xxxx....... Casual........... Off and on..............
8. How does your diet affect your symptoms? If it does. Please
explain. After 3-4 months on diet, rash stops completely with no
need to take dapsone. Occasional small cheats (once or twice a
month at most, a couple bites of a bagel or chinese food with soy
sauce) do not have an effect. But there is a point at which it
starts coming back, although it's difficult to tell what that is.
9. Do you get a red rash like symptom? If so does it itch?
I get little blister-like lesions and red bumps. It itches like
crazy.
10. Do you get watery blisters? If so do they itch? Do all the blisters
itch or do some blisters come up with out itching? All blisters
itch, most are watery, all dry up and stop itching if scratched open.
Then they scar.
11. Do you have typical CD symptoms? Please explain.
No GI problems at all.
12. Do you have any other symptoms? Please explain.
n/a
13. Can you tell if you have eaten gluten?
not if it was a rare "cheat", but if I start eating gluten
regularly the DH will come back with a vengeance within 1-2 weeks,
guaranteed!
14. How long does it take you to be aware that you have eaten gluten?
for small amounts I can't tell, for regular ingestion of gluten it
takes 1-2 weeks.
15. Do you have any other symptoms which you contribute to your DH
condition? What are those symptoms?
I have a strange infection in one of my eyes that has popped up
two times, both after going off the GF diet. I think it's related
somehow out my opthamologist, who specializes in skin/eye diseases,
doesn't believe it is connected (but he doesn't know what it is
either!).
16. Do you feel that any important questions have been omitted? If so
what are they? Please answer those questions.
Some questions that would be good to ask are
a)genetic questions (any first-degree relatives with DH? Children
with DH?).
b) how many people with DH have had an intestinal biopsy to determine
whether they actually have damage to their gut, i.e. celiac
disease, even if they don't have GI symptoms?
c) How do people with relatively "mild" DH and no GI symptoms handle
the dapsone vs. diet question? I know of a man who only has to take
dapsone once a week. Is it worth the trouble of the diet? For me it
is extremely difficult to justify the total life commitment to the GF
diet if I can take a SMALL dosage of a drug a few times a week which
has had no adverse side effects (at least not yet) and eat normally.
Unlike those with true celiac disease, those of us with DH have more
options.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~2.
1. How long have you been diagnosed with DH?
2 yrs, diagnosed "probable" DH by skin biopsy.
2. If not officially diagnosed, how long do you believe you have
had DH? na
3. How long did it take to diagnose DH officially or otherwise
2 yrs
4. What were the first symptoms associated with your diagnoses?
itchy ankles, thought I had poison ivy
5. Are you on a GF diet? yes
6. How long have you been on a GF diet. 2 yrs
7. How would you rate your diet? Off and on
8. How does your diet affect your symptoms? If it does. Please
explain.
Hard to tell, seem to be sensitive to concentrated gluten, such
as beer, liquor, MSG I think.
9. Do you get a red rash like symptom? Yes If so does it
itch? Yes
10. Do you get watery blisters? Yes If so do they itch? Yes
Do all the blisters itch or do some blisters come up with out
itching? Yes
11. Do you have typical CD symptoms? Please explain. None at all
12. Do you have any other symptoms? Please explain. no
13. Can you tell if you have eaten gluten?
Sometimes I feel a flush and get red faces. but usually only when
the itch starts and blisters appear
14. How long does it take you to be aware that you have eaten gluten?
1 hr to 1 day depending on the substance/food
15. Do you have any other symptoms which you contribute to your DH
condition? What are those symptoms?
I'm convinced I react to chili peppers, red pepper, jalapenos, a
serano peppers / just like gluten.
16. Do you feel that any important questions have been omitted? If so
what are they? Please answer those questions.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~3.
1. How long have you been diagnosed with DH? since October 1995
2. If not officially diagnosed, how long do you believe you have
had DH?
Well, I was born with Celiac disease (only now I know). But the DH
appeared during my last 3 pregnancies starting 13 years ago.
3. How long did it take to diagnose DH officially or otherwise?
13 years
4. What were the first symptoms associated with your diagnoses?
uncontrolled itching everywhere
5. Are you on a GF diet? yes
6. How long have you been on a GF diet? October 1995
7. How would you rate your diet? Very strict...x...
8. How does your diet affect your symptoms? If it does. Please
explain. GF diet helps get rid of symptoms completely. Sea
salt brought symptoms back recently
9. Do you get a red rash like symptom? yes If so does it itch?
yes
10. Do you get watery blisters? If so do they itch? Do all the blisters
itch or do some blisters come up with out itching?
11. Do you have typical CD symptoms? Please explain. diarrhea, bloating,
gas, cramps, bad teeth, sores that don't heal
12. Do you have any other symptoms? cessation of periods, uncontrolled
eating, bad temper.
13. Can you tell if you have eaten gluten? yes
14. How long does it take you to be aware that you have eaten gluten?
a couple of hours
15. Do you have any other symptoms which you contribute to your DH
condition? no
16. Do you feel that any important questions have been omitted? If so
what are they? Please answer those questions.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~4.
1. 6 months
2. 32 years
3. 32 years
4. When I was 21 and working as a chemistry lab assistant in college, I
developed itchy blisters on my elbows. The rash spread over the next
few months to several other parts of my body. Over the years I have
seen 4 dermatologists - one was even the head of the dermatology dept
at the Univ of Mich (late 1960s). No one knew what it was. The U of M
guy said I was self-absorbed and needed a man to worry about. I had a
man in spite of being rashy and my rash had not really improved that
much with him (I love this story). I toughed it out over the years with
steroid creams and stumbled on what I had myself from an article in Sep 96
Prevention magazine followed up by research on the internet. I do have a
positive diagnosis of cd from a gastroenterologist and we are assuming my
rash which has gone away is dh.
5. yes
6. 6 months
7. some what strict
8. if I eat even the smallest trace of gluten I can tell skin-wise and a
little other-wisw
9. I itch and I may even get a little bit of rash; I also get bloated
and gassy (no diarrhea)
10. I always get watery, itchy blisters
11. I have minor digestive and gynecological cd symptoms. I was
surprised when those parts of me improved along with the rash. I
guess if you've never been normal, how do you know what it is?
12. not that I know of
13. yes
14. within minutes
15. don't know
16. I would have asked a question about family members. No one else in
my immediate family has been tested yet, but my mother and both of my
sisters are feeling much better after going on reduced gluten diets.
My one sister seems to have a very minor case of dh. My mother has
strong cd symptoms. Even my husband's incapacitating headaches (he's
been to all kinds of doctors) have pretty much cleared up going on a
mostly gluten-free diet. Since I know a lot about cd now (I hadn't
even heard of it before last year), I am sure that at least 3 people I
work with have family members with it. In 2 cases the family members
have gone gluten-free just to try it and their health problems went
away. You can guess that I have come to the conclusion that gluten
isn't good for anyone.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~5.
1. How long have you been diagnosed with DH? 41/2 years
2. If not officially diagnosed, how long do you believe you have
had DH? 4 1/2 years
3. How long did it take to diagnose DH officially or otherwise? 1
month
4. What were the first symptoms associated with your diagnoses?
blisters
5. Are you on a GF diet? yes
6. How long have you been on a GF diet?
7. How would you rate your diet? Very strict...XX.. Some what
strict......... Casual........... Off and on..............
8. How does your diet affect your symptoms? If it does. Please
explain. No blisters when GF.
9. Do you get a red rash like symptom? No If so does it itch?
10. Do you get watery blisters? Yes If so do they itch? Horribly Do
all the blisters itch or do some blisters come up with out
itching? Never blisters without burning/itching.
11. Do you have typical CD symptoms? Please explain. No
12. Do you have any other symptoms? Please explain. NO
13. Can you tell if you have eaten gluten?--Blisters would show
14. How long does it take you to be aware that you have eaten gluten?
Would react in 45 minutes to 2 hours.
15. Do you have any other symptoms which you contribute to your DH
condition? What are those symptoms? NO
16. Do you feel that any important questions have been omitted? If so
what are they? Please answer those questions.
17. HOW LONG WERE YOU ON DAPSONE? 4 YEARS
~~~~~~~~~~~~~~~~~~~~~~~~~~~~6
1. 20 years
2. Probably had it most of my life
3. 12 years
4. blisters
5. no
6--9 I am not currently on the diet-the dermatoligist(sp) that
diagnosed me said "If you will just take your Dapsone regularly
there is no need to go on this very complicated diet"
10. yes yyyeeesss! All itch
11. I have been experiencing abdominal pain, fatigue, mental fuzzies for
quiet some time now.
12 ?
13. yes
14. within 2-3 hours
15 ?
My seven year old son was diagnosed with Celiac 3 1/2 years ago.
He never had the DH symptoms just full blown celiac. 6 month prior
to the celiac diagnoses he was diagnosed with Diabetes. It seems
the diabetes triggered the\ inevitable in him. I have thought for
the past 2 years that my symptoms were attributed to having
to deal with the stress of a child with all the multiple food
challenges.
But I am beginning to think my DH is taking a turn to full-blown
Celiac also. I have not experienced the one classic symptom however,
diarrhea. (yea) I would like very much to hear from anyone who has
experienced these same turn of events.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~7.
1. How long have you been diagnosed with DH? Dec. 1995.
2. If not officially diagnosed, how long do you believe you have
hadDH? Since 1988. Age 7.
3. How long did it take to diagnose DH officially or otherwise?
Did not look for a diagnoses until sick with diarrhea in 1995,
Age 14.
4. What were the first symptoms associated with your diagnoses?
Diarrhea started in Jan 1995, Rash spread down arms and legs
and across bottom in June 1995..
It had always been on elbows and knees since I was 7.
5. Are you on a GF diet? gluten/dairy/soya/egg/free
6. How long have you been on a GF diet? Since Dec. 1995.
7. How would you rate your diet? Has to be Very strict.
8. How does your diet affect your symptoms? If it does. Please
explain.
Although I have been this strict diet for 1 year and 3 months.
I still have the rash all the time on my elbows and knees.
Some times it spreads down my arms and legs and across my
bottom. .
My GI Specialists told me that some times the DH does not
respond to a G/F/Diet. I hope he is wrong.
9. Do you get a red rash like symptom? If so does it itch?
The rash looks like red wet blisters. Which crust over when
scratched. Yes. They are very itchy.
10. Do you get watery blisters? If so do they itch? Do all the
blisters itch or do some blisters come up with out itching?
They all itch.
11. Do you have typical CD symptoms? Please explain.
Yes. When I started the Diet on the 27th of Dec 1995
Age 14, I was very ill.
I had lost over two and a half stone in weight.
Had diarrhea, steatorrhea, flank pain, fatigue, dermatitis
herpetiformis, dizziness and daily headaches on one
side of my head.
12. Do you have any other symptoms? Please explain.
Yes. I also have a Kidney disease called IgA Nephropathy.
Which has a Biological Similarity to Celiac Disease.
13. Can you tell if you have eaten gluten? Yes.
14. How long does it take you to be aware that you have eaten gluten?
Within 4 hours, I will have gas and diarrhea.
15. Do you have any other symptoms which you contribute to your DH
condition? What are those symptoms?
I don't like to get too hot. As it makes me itch a lot.
16. Do you feel that any important questions have been omitted? If so
what are they? No.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~8.
1. How long have you been diagnosed with DH?
Since Nov 1996 5 months
2. If not officially diagnosed, how long do you believe you have
hadDH?
3. How long did it take to diagnose DH officially or otherwise?
I had had symptoms over a year ago, but they went away on their
own. They returned in September of last year and I was diagnosed
via biopsy at the end of October. The reason it took so long was
my hesitance to go to a dermatologist. Once I saw a dermatologist
she biopsied them immediately and I knew in about 2 weeks.
4. What were the first symptoms associated with your diagnoses?
\ VERY itchy, burning rash that started on my feet, elbows, hands
and knees. In hind sight, I spent a month at summer camp in July
and was sick the whole month. I couldn't eat. I think that was
probably symptoms of CD.
5. Are you on a GF diet? YES
6. How long have you been on a GF diet? 5 months
7. How would you rate your diet? Very strict..X.... Some what
strict......... Casual........... Off and on..............
8. How does your diet affect your symptoms? If it does. Please
explain. I think it does because when I was accidentally eating
gluten in some ice cream, the itching and blisters got much worse.
Now that I am more careful, it is getting a lot better. I can see
that my arms and legs are starting to clear up.
9. Do you get a red rash like symptom? If so does it itch? Yes and
Yes
10. Do you get watery blisters? If so do they itch? Do all the blisters
itch or do some. blisters come up with out itching?
Yes the blisters are usually fairly small and they break open and
then crust over. They itch like crazy. I can tell exactly where a
new blister is about to come up at since it will itch like mad. They
almost always come up with itching.
11. Do you have typical CD symptoms? Please explain.
Yes, I spent a month at a summer camp for kids in July of last year.
Kid food there was heavily wheat based and I was very ill the whole
time. It got to the point where I couldn't eat anything since just
the thought of food made me sick to my stomach.
12. Do you have any other symptoms? Please explain.
13. Can you tell if you have eaten gluten?
I think so, but usually if it has been repeatedly. I don't know if
i have like a minor ingestion.
14. How long does it take you to be aware that you have eaten gluten?
I don't know.
15. Do you have any other symptoms which you contribute to your DH
condition? What are those symptoms?
16. Do you feel that any important questions have been omitted? If so
what are they? Please answer those questions.
Are you treating this with dapsone or just diet or both?
I am not taking dapsone at this time. It is too expensive and I
have no health insurance to cover it. Besides that, I am not
comfortable of time.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~9.
1. I have been diagnosed with DH since I was 24 (1991).
2. I was officially diagnosed by a dermatologist, but I had symptoms
since I was approx. 12 years old.
3. It took about 3 years and 5 doctors to get the correct diagnosis.
In that time I was treated for anxiety with meds, scabies, dry
skin, contact dermatits, allergy to soap, and anything else the
first dermatologist could come up with. Finally I was referred
by my gynocologist who noticed my rash to an excellent
dermatologist who recognized the rash immediately. Dr. Walter
Shelley explained it somewhat and gave me a prescription for
dapsone. The next day I was THRILLED to see my rash going away.
He did not mention the intestine damage from gluten,
and did not give me any good resources for dealing with this. I
began to check into it more on my own, and really understand it
only about 1 year
ago. I have never been to a GI (don't plan to, either) nor had
any testing done, except for blood on the Dapsone.
4. My first symptoms were blisters on my fingers and elbows and
knees.
5. I have been on a GF diet for about 7 months now.
6. See above
7. I would rate my diet as somewhat strict to strict. I eat out
quite a bit and run into hidden gluten. I totally avoid it
otherwise.
8. My diet does effect my symptoms. I notice an increased rash
after eating something that might have hidden gluten, or iodine
(shrimp), or zinc (vitamin w/ minerals).
9. Yes, I get the 'ol red rash and it DOES itch. I think that all
of my of my rash itches at one time or another. Especially if I
scratch it.
10. Yep, I get the blisters too. They itch and kinda burn.
Sometimes intensely.
11. I do not get the really bad diarrhea, nor do I vomit or get
unbearable gastritus. I do bloat, have loose stools, I think
that I get brain fog (it may just be me!) and I feel like there
is a rock in my stomach (can't digest). I don't get anemic, and
I am somewhat overweight (depending on who you ask!) about 25
pounds over ideal.
12. I am frequently cold (poor circulation) and I have other
allergies (mold, dust , cats, dogs, hayfever)
13. Yes, I begin to feel the tingle of a rash coming on. I notice it
on my jaw line, eyelids, and hip area.
14. I am not really sure how long it takes. Maybe as long as 8
hours.
15. Not that I can think of, but then again there is so much
connection with everything else. My weak nails are probably a
result of poor absorption.
16. Yes, what are people doing to treat this? I stopped taking
Dapsone about 4 months ago because my husband & I are trying to
get pregnant. I use the diet and add vitamins and herbs to treat
myself. Sometimes if my rash is really bad, I use some topical
Benadryl cream. I notice an increase in rash about 2 weeks before
menstruation (the Doc says because of rise in Testosterone level).
~~~~~~~~~~~~~~~~~~~~~~~~~~~~10.
1. How long have you been diagnosed with DH? 4 yrs.
2. If not officially diagnosed, how long do you believe you have hadDH?
4.5years
3. How long did it take to diagnose DH officially or otherwise? 3
months
4. What were the first symptoms associated with your diagnoses?
rash and itching/burning
5. Are you on a GF diet? yes
6. How long have you been on a GF diet? 3.5 years
7. How would you rate your diet? Very strict...... Some what
strict......... Casual........... Off and on......X........
8. How does your diet affect your symptoms? If it does. Please
explain.
9. Do you get a red rash like symptom? If so does it itch?
Stress and lack of sleep seem to affect my rash more than diet
10. Do you get watery blisters? If so do they itch? Do all the blisters
itch or do some blisters come up with out itching? yes, yes, some
are not itchy.
11. Do you have typical CD symptoms? Please explain. I have been
diagnosed with Celiac, but am not a typical celiac. I have more
diarrhea since going GF.
12. Do you have any other symptoms? Please explain. No
13. Can you tell if you have eaten gluten? Unsure what causes me
problems.
14. How long does it take you to be aware that you have eaten gluten?
Not sure.
15. Do you have any other symptoms which you contribute to your
DH condition?. What are those symptoms?
16. Do you feel that any important questions have been omitted? If so
what are they? Any other autoimmune diseases? Lupus.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~11
1. How long have you been diagnosed with DH? i'VE NEVER BEEN
OFFICIALKLY DIAGNOSED, EVEN THO I WENT TO A /
DERMATOLOGIST WITH CLASSIC SYMPTOMS, BUT
THAT WAS WAY BEFORE DIAGNOSIS WITH CD.
2. If not officially diagnosed, how long do you believe you have had
DH?
SYMPTOMS SINCE EARLY ADOLESCENCE, ESPECIALLY ON ELBOWS
3. How long did it take to diagnose DH officially or otherwise? I
FIGURED IT OUT MYSELF AFTER DIAGNOSIS WITH CD. I STARTED READING
ABOUT THIS RELATED SKIN CONDITION, LOOKED AT ELBOWS AND HANDS
AND NOTICED THAT ALL LESIONS WERE GONE! IT DOESN'T TAKE A
BRAIN SURGEON TO PUT THE 2 TOGETHER.
4. What were the first symptoms associated with your diagnoses?
LESIONS ON ELBOWS
5. Are you on a GF diet? YES
6. How long have you been on a GF diet? 12 YEARS
7. How would you rate your diet? Very strict...X... Some what
strict......... Casual........... Off and on..............
BUT NOT ULTRAORTHODOX.
8. How does your diet affect your symptoms? If it does.
Please explain. MOST DH. SYMPTOMS GONE COMPLETELY, EXCEPT A FEW
PERSISTENT. LESIONS
ON BACK AND TRUNK WHICH DON'T BUDGE
9. Do you get a red rash like symptom? USUALLY THEY AREN'T RED, JUST
BUMPS If so does it itch? EXTREME ITCH.
10. Do you get watery blisters? NO If so do they itch? Do all the
blisters itch YES or do some blisters come up with out itching?
11. Do you have typical CD symptoms? YES Please explain. I'M A
DIAGNOSED CELIAC
12. Do you have any other symptoms? Please explain.
13. Can you tell if you have eaten gluten? tRACE AMOUNTS OF GLUTEN GIVE
ME GAS, CELIAC "BOWEL MOVEMENTS". A WHOLE BITE OF A FLOUR
TORTILLA, FOR EXAMPLE, WILL MAKE ME VOMIT ABOUT 3 HOURS LATER. I ALSO
GET DH SYMPTOMS WHICH ARE MUCH HARDER TO RELATE TO GLUTEN ERRORS.
14. How long does it take you to be aware that you have eaten gluten? TWO
/ THREE HOURS OR OVERNIGHT.
15. Do you have any other symptoms which you contribute to your DH
condition? What are those symptoms?
16. Do you feel that any important questions have been omitted? If so
what are they? Please answer those questions.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~12.
1. How long have you been diagnosed with DH? Not formally
diagnosed
2. If not officially diagnosed, how long do you believe you have had
DH? About 6 months
3. How long did it take to diagnose DH officially or otherwise?
Pretty soon after reading initial Celiac FAQs!
4. What were the first symptoms associated with your diagnoses?
Itchy rash, small golden blisters, yadda, yadda...
5. Are you on a GF diet? I THINK so
6. How long have you been on a GF diet? 1.5 months
7. How would you rate your diet? Very strict...... Some what
strict...X....... Casual........... Off and on.....
Somewhat strict. To my knowledge I an GF but I have reason to
suspect that Rice Dream which I eat and drink may not be GF.
Unsure as of yet.
8. How does your diet affect your symptoms? If it does. Please
explain. Since I went GF, the rash has been receding, the hair
follices are producing again and the red, swollen skin looks more
and more like normal skin.
9. Do you get a red rash like symptom? If so does it itch? Yes.
Yes.
10. Do you get watery blisters? If so do they itch? Do all the
blisters itch or do some blisters come up with out itching?
Some may come up without itching but the "itch-fits" occurs mostly
at night when I am half asleep and in the dark, so I cant tell what
specifically is itching or not.
11. Do you have typical CD symptoms? Please explain.
Yes, Steatorrhea (fatty stool), lactose intolerance, sensitivity
other foods, poor absorption of water and nutrients.
12. Do you have any other symptoms? Please explain.
Bloated stomach and smelly flatulence due to lactose intolerance
(went away when I when LF).
13. Can you tell if you have eaten gluten? No.
14. How long does it take you to be aware that you have eaten gluten?
I will probably never be aware of individual incidences. My
(undiagnosed) CD manifests itself without any discomfort.
15. Do you have any other symptoms which you contribute to your DH
condition? What are those symptoms? Seems like (though I may be
wrong) when I eat foods I am
sensitive to, DH flares up, but maybe I am just eating some hidden
gluten.
16. Do you feel that any important questions have been omitted? If
so what are they? Please answer those questions.
WHERE on your body do you have DH. I have it on my wrists and
that's it --no extensor surfaces as is usual -- pretty weird!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~13
1. Have not been diagnosed with DH. Have self-diagnosed. Wheat
allergy over a year ago. Specifically that is DH since I got on
Listserve.
2. How long has anyone had any of this stuff? Was diagnosed with
exposure to drying conditions. Have probably had problems with
allergy for someone who ate salads every night.
3. See above
4. Itching all over.
5. Yes
6. About a year. Have problems when I go out of town on business and
relax regimen.
7. Diet is somewhat strict--I don't worry (yet) about the malt
flavoring (recent posts), white vinegar or completely avoid alcohol.
But more and more decisions are based on allergy.
8. GF diet keeps me from itching
9. I do not have a red rash. I have not been able to tell which comes
first: bumpy tiny lumps or itching. Usually notice lumps after
I've been scratching for a while. Itching usually focuses in several
specific spots--near elbows, along thighs and around neck. Is all
over after air hits my skin when I change clothes.
10. No watery blisters.
11. I do not have diarrhea when exposed to wheat. I itch. I do not
seem to remember gassy blowups like others have described. My
ex-husband says I've been a grouchy bitch. He doesn't say whether
he has seen an improvement since I went GF. Notice more and more
allergy symptoms all the time: itchy, watery eyes and plugged sinuses.
12. Think it's been covered. Went shopping Saturday. Stock boys were
restocking flour, sugar, etc. Recognized I was going into
asthma/bronchitis symptoms almost immediately. Somebody must have
broken a bag of flour!
13. I have been itching around my neck all tonight. Usually this
starts within half an hour after getting something bad. This is
now within 15 minutes of having dinner. If there is a problem, I most
suspect Kraft Garlic Ranch dressing. Could also be Five Brothers
Spaghetti Sauce. Hasn't been a problem up to now, but that
doesn't mean they didn't change ingredients.
14. Usually within half an hour. Had a beer Saturday night, and was
itching within half an hour. Took a benadryl when I got home, and
Sunday morning consequences weren't as bad as two weeks before when
I sucked up an incredible amount of cigarette smoke.
15. Don't know yet. Am nervous about articles on ListServe that talk
about DH becoming CD and how even a cookie crumb can cause severe
complications almost immediately.
16. Do you regularly take any medication for your allergy symptoms?
No. Do you think any of your allergy symptoms could have another
cause? Will get around to reading long article on what is it, EH
that was on listserve last week, so don't know. DH seems to be closest.
Sprue just doesn't seem to fit, yet. Sure glad I don't have it as
bad as my friend Jan, who traces all her allergies and subsequent
problems to Nutrasweet.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~14
1. How long have you been diagnosed with DH? in the process of tests.
2. If not officially diagnosed, how long do you believe you have
hadDH? 5 years
3. How long did it take to diagnose DH officially or otherwise?
2 years based on my own self testing and elimination diets.
4. What were the first symptoms associated with your diagnoses?
- apparent rashes on front of shoulders, on the inside of wrists
and elbows, between toes. Now the rash is only on the inside of
elbows and wrists as well as on my earlobe. It is primarily on
my right side.
5. Are you on a GF diet? - yes, basically, about 95 %
6. How long have you been on a GF diet? - 2 years
7. How would you rate your diet? - Some what strict
8. How does your diet affect your symptoms? If it does. Please
explain. - a non gf diet gives me gas and rash and a bloated
feeling in my stomach.
9. Do you get a red rash like symptom? YES If so does it itch? YES
10. Do you get watery blisters? NO If so do they itch? Do all the
blisters itch or do some blisters come up with out itching?
11. Do you have typical CD symptoms? I don't think so.
My rash is on the concave not convex areas of my elbows and
wrists. I don't feel weakness either.
12. Do you have any other symptoms? Red, slightly swollen lips after
drinking beer.
13. Can you tell if you have eaten gluten? Yes: bloating, gas and
rash mainly.
14. How long does it take you to be aware that you have eaten gluten?
2-4 hours.
15. Do you have any other symptoms which you contribute to your DH
condition? What are those symptoms? Phlegmy throat and the need
to clear it often, especially after eating glutenous diet.
16.Do you feel that any important questions have been omitted? If
so what are they? Please answer those questions.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~15
1. How long have you been diagnosed with DH?
Officially , 1 month
2. If not officially diagnosed, how long do you believe you have
hadDH? over 13 years
3. How long did it take to diagnose DH officially or otherwise?
over 13 years
4. What were the first symptoms associated with your diagnoses?
hives, red blotches, severe itching
5. Are you on a GF diet? yes,
6. How long have you been on a GF diet? 10 months
7. How would you rate your diet? Very strict...... Some what
strict.......XXX.. Casual........... Off and on..............
8. How does your diet affect your symptoms? If it does. Please
explain.
At first, I had IMMEDIATE relief. Eventually, symptoms came back
although. not always quite as bad. Blisters were localized to
fewer areas.
9. Do you get a red rash like symptom?
YES! If so does it itch? YES! Even before it appears!
10. Do you get watery blisters? YES!
If so do they itch? Not as much as red blotches.
Do all the blisters itch or do some blisters come up with out
itching? Some come without as much itching.
11. Do you have typical CD symptoms? No. I was diagnosed at 10 months.
At the time I had classic symptoms and appeared ready to succumb to
malnutrition. (I am 34) We were told I would outgrow it. After
several years I went back to gluten I had fewer symptoms - gas, and
bloating, which we did not recognize because they were not
accompanied by the malnutrition. We assumed I would have a sensitive
colon. I have only recently discovered that celiac does not go away
and went on GF diet.
12. Do you have any other symptoms? Most of my problems were skin
related or other signs of malabsorption: DH, eczema, scaling similar
to psoriasis, chelitis(?) around mouth - my mouth split at sides,
ridges on nails, dry malnutrition at early age..
13. Can you tell if you have eaten gluten? Not yet. I haven't been GF
long enough.
14. How long does it take you to be aware that you have eaten gluten?
Not sure.
15. Do you have any other symptoms which you contribute to your DH
condition? What are those symptoms? Hot flashes at joints.
Sometimes precede breakouts of rash or blisters.
16. Do you feel that any important questions have been omitted? If so
what are they? Please answer those questions. Yes, I would
like to know the dosage level and time of others on Dapsone.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~16
1. Diagnosed - 2 years
2. Officially diagnosed.
3. Time to diagnose - The first time my dermatologist saw the rash he
suspected it; two biopsies later, it was confirmed.
4. Red, itchy, water blisters; much like chicken pox
5. Yes
6. 15+ years
7. Very strict
8-9. As long as I do not ingest hidden glutens, the DH is fairly
controlled. If I do eat something with a hidden gluten, within
24 hours I am itching and the lesions begin to appear - usually
on my face first.
10. Watery blishers - yes. Itch? - horrendously, and burn and sometimes
are painful.
11. Typical symptoms? Sometimes - bloating, gas, nausea, occasionally
diarrhea.
12. DH Outbreak
13. Only if have a DH breakout.
14. Usually within 24 hours, sometimes sooner
15. No
16. Additional questions - One question I would like to have an answer to
"how do most people control the DH"? I am one of the few people who
cannot tolerate dapsone or sulfaparadine. After taking dapsone for
29 days I had a severe reaction went into drug induce hepatitis,
liver function levels went out of site. My doctors (GI and
Dermatologist were extremely concerned and consulted with many
doctors throughout the country). The only thing I could do was wait
for the toxin to leave my system. Thankfully, there does not appear
to have been any damage to my liver.
I understand that this type of reaction to dapsone is rare,
and in fact, when I had my reaction only about 13 known reactions of
this type had occurred. Just a reminder to anyone taking this drug,
it is extremely important to have regular blood tests done. During the
time I was on dapsone, I had blood work done every 10 - 14 days. I am
glad I did, otherwise, this reaction could have been fatal.
Currently, the only way I have any relief from DH is a strict gluten
free diet and taking 500 mg of tetracycline and niacinamide three times
a day. This does not prevent the DH breakouts, but it does help control
the itching, burning, etc. and may help to heal the lesions a little
quicker. My dermatologist consulted with the National Institute of
Health on this course of action. I have been taking this combination
for about 1 1/2 years with no apparent side effects.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~17.
1. How long have you been diagnosed with DH?
I was diagnosed in Feb., 1991 at the age of 42. (so that's about 6
years ago)
2. If not officially diagnosed, how long do you believe you have hadDH?
Was officially diagnosed by a dermatologist.
3. How long did it take to diagnose DH officially or otherwise?
I went to a GP for several weeks and was incorrectly diagnosed with
psoriasis. I had terrible outbreaks on elbows and knees then (itchy
and very painful with weeping sores). The GP didn't figure it out.
After the cortisone creams were unsuccessful, I went to the
dermatology clinic at the U of Minnesota Hospital. The doctor I
just happened to see has done research on DH and suspected it right
away. But he had to take me off all creams, etc. for a few weeks so
that the symptoms weren't masked.
4. What were the first symptoms associated with your diagnoses?
Terrible skin outbreaks on elbows and knees.
5. Are you on a GF diet? Yes.
6. How long have you been on a GF diet?
Since May, 1996 - almost 1 year.
7. How would you rate your diet? Very strict...... Some what
strict.....X.... Casual........... Off and on..............
I'd call it "consistent" and "somewhat strict." I don't eat
anything that I know has gluten in it. I have not stopped eating
such things as Rice Krispies because of the danger of
cross-contamination in manufacture, however.
8. How does your diet affect your symptoms? If it does. Please
explain. I am still taking dapsone but gradually reducing the dose.
I am now at 100 mg per day and have no outbreaks. Before I was on
the GF diet, 100 mg per day was not enough to prevent outbreaks. I
had to take at least 150 at that time. My goal is to wean totally
off dapsone, and I will gradually reduce the dose as the symptoms
stay at bay.
9. Do you get a red rash like symptom? If so does it itch?
My skin goes through a "life cycle" of an outbreak. First, there's
a faint rash that I recognize by itching before it appears clearly
to me or others. Then it becomes redder, itchier, and more sore.
Then it blisters and forms a fluid-filled sac. Then the sac breaks
and the blister scabs over and gradually goes away.
10. Do you get watery blisters? If so do they itch? Do all the blisters
itch or do some blisters come up with out itching? See above. The
blisters itch and hurt. If I scratch them, they hurt more. If
I don't scratch them, they itch more.
11. Do you have typical CD symptoms? Please explain.
I do not have diarrhea, indigestion, or the CD-type symptoms that
people write about on the list. I can't say that I have had them at
all.
12. Do you have any other symptoms? Please explain. the skin
problems
13. Can you tell if you have eaten gluten?
If I eat more than the dapsone can keep at bay, I will definitely
break out. I have had break outs on elbows, knees, buttocks, scalp.
The reaction, however, is not immediate -it may not appear for
several days.
14. How long does it take you to be aware that you have eaten gluten?
can be several days
15. Do you have any other symptoms which you contribute to your DH
condition? What are those symptoms? not really
Since being diagnosed, I have also had problems with optic nerve disc
drusen in my eyes, but everyone says there is no connection.
16. Do you feel that any important questions have been omitted? If so
what are they? Please answer those questions. You haven't
explicitly asked about the use of dapsone, sulfapyridine, or
other drugs - dosages, history, success, etc. I've included my
response in the above. Because of the side effects of dapsone on
both red and white blood count, I have had blood work done every 4
months since going on the drug. My white count has gotten very low,
and the doctor has indicated several times that if it got lower,
he'd have to take me off dapsone. There aren't many alternatives.
Please answer these questions in the order that they were asked and
add any additional comments which you would like to make at the end.
+++One of the most insidious things about DH is that there is such a lag
between the ingestion of gluten and the appearance of symptoms. Also,
weaning off dapsone takes a long time, even in the absence of gluten,
because of the mechanism with which the body produces the skin deposits.
The issues of accurate food labeling and more research are very important.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~18
1. How long have you been diagnosed with DH?
Not officially diagnosed with DH but symptoms that are at least
25 years old became much reduced once I went on a gluten free diet.
2. If not officially diagnosed, how long do you believe you have
hadDH?
At low levels and at different places on my body, since middle
childhood. I had rash on my upper arms and elbows. water,
blistery, itchy scalp lesions.
3. How long did it take to diagnose DH officially or otherwise?
I'm now 54 years old and was 53 when I began to suspect gluten
was the source of my intestinal problems.
4. What were the first symptoms associated with your diagnoses?
As stated above. No official diagnosis as yet. The biopsy of
small. intestinal tissue came back negative. However, at the
time of the biopsy I had been on a gluten free diet for 3 months.
5. Are you on a GF diet? Yes.
6. How long have you been on a GF diet? About one year.
7. How would you rate your diet? Very strict..x.... Some what
strict......... Casual........... Off and on..............
8. How does your diet affect your symptoms? If it does. Please
explain. My symptoms now (in middle age) take the form of blistery
sores in scalp and at hair line. These symptoms are about 90%
absent since going on gluten free diet.
9. Do you get a red rash like symptom? If so does it itch?
Not rash, but individual patchy blisters. Yes, itch.
10. Do you get watery blisters? If so do they itch? Do all the
blisters itch or do some blisters come up with out itching?
They all itch.
11. Do you have typical CD symptoms? Please explain.
I express some of the symptoms. No to diarrhea and/or
constipation. Yes to severe gas, bloating and intestinal
rumblings.
12. Do you have any other symptoms? Please explain. no
13. Can you tell if you have eaten gluten?
It is hard to say since I try very hard to avoid gluten.
Sometimes I have trouble, most likely after eating out.
I now think that the caramel color in some soda pop gives me
trouble. Also (sigh) I've learned to avoid beer.
14. How long does it take you to be aware that you have eaten
gluten? Within an hour or two.
15. Do you have any other symptoms which you contribute to your DH
condition? What are those symptoms?
Not that I know of. I've avoided milk and milk products
for years because of stomach distress. So presumably milk
products were not contributing to the skin disorders.
16. Do you feel that any important questions have been omitted?
If so what are they? Please answer those questions.
I suggest you ask, "What medical treatments have you tried
to get for what you now know/believe to be DH and what was
prescribed and what was the outcome of the treatment?
In my case, I've seen several dermatologists over time about
my scalp condition. None suggested a food sensitivity as the
cause. The dermatologists prescribed various medicated
shampoos, none of which helped in the long run.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~19
1. How long have you been diagnosed with DH?
I have not been diagnosed at this point
2. If not officially diagnosed, how long do you believe you have
hadDH?
I have had symptoms for 7 years (these symptoms are what
prompted my GF
diet)
3. How long did it take to diagnose DH officially or otherwise?
n/a
4. What were the first symptoms associated with your diagnoses?
Red rash under right breast, on collar bone, pubic area and
down center of stomach area
5. Are you on a GF diet? yes
6. How long have you been on a GF diet? 7 years
7. How would you rate your diet? Some what strict---it would be
more strict if I knew all of the culprits-I will NOT eat
anything that I know I'll react to.
8. How does your diet affect your symptoms? If it does. Please
explain.
If I eat of food that isn't GF, then I see the rash within 20
minutes-2 hours in my pubic area
9. Do you get a red rash like symptom? If so does it itch?
yes I get the rash, but it doesn't itch
10. Do you get watery blisters? If so do they itch? Do all the
blisters itch or do some blisters come up with out itching?
This is a good question, I didn't know that was a symptom and
yes I do get watery blisters. They itch sometimes, not always.
11. Do you have typical CD symptoms? Please explain.
Yes, Irritable Bowel, 7 days of a bloated stomach
12. Do you have any other symptoms? Please explain.
yes, paranoia, & I go unconscious, too, 5-10 pounds of water
weight gain
13. Can you tell if you have eaten gluten? yes, by the rash
14. How long does it take you to be aware that you have eaten gluten?
20 minutes to 2 hours
15. Do you have any other symptoms which you contribute to your DH
condition? What are those symptoms? No
16. Do you feel that any important questions have been omitted? If
so what are they? Please answer those questions. No
~~~~~~~~~~~~~~~~~~~~~~~~~~~~20
1. How long have you been diagnosed with DH?
Since August 1996. I was diagnosed based on a positive skin
test to wheat, clinical signs, the description of my rashes and
blisters, and response to diet.
2. If not officially diagnosed, how long do you believe you have
hadDH? probably for at least 2 years, maybe most of my life to
some degree. (I also have atopic dermatitis due to other
allergens, so my skin has always been a disaster, and it's
hard to sort it out in retrospect.)
3. How long did it take to diagnose DH officially or otherwise?
Second visit to allergist (total of 3 weeks between visits)
4. What were the first symptoms associated with your diagnoses?
Incredible, penetrating pruritis, blisters, weepy skin, rashes
that never healed, were minimally responsive to massive doses of
antihistamnes and nearly continuous administration of topical steroids.
5. Are you on a GF diet? Yes
6. How long have you been on a GF diet? Since diagnosis (August
1996)
7. How would you rate your diet? Very strict...... Some what
strict......... Casual........... Off and on..............
Varies between incredibly strict (most of the time, since I
generally cook everything for myself, from scratch) to
Somewhat strict, if I have to eat out at a restaurant or another
person's home (thanks to painful experience, i don't trust it if i
didn't make it)
8. How does your diet affect your symptoms? If it does. Please
explain. I saw a 50-75% improvement in my skin after 3 months on
the diet (still exposed to other, atopic allergens at work, but I'm
working on changing jobs). When I slip up, i start with the old
itch, and break out in blisters and rashes, in 30 min to 6 hours.
9. Do you get a red rash like symptom? If so does it itch?
Yes I get the rash, and the itch is indescribable
10. Do you get watery blisters? If so do they itch? Do all the
blisters itch or do some blisters come up with out itching?
I get blisters about half the time, almost always itchy
11. Do you have typical CD symptoms? Please explain.
For about the past month, i have begun having bloating, gas and
diarrhea, along with mild to moderate nausea, if I slip up on
the diet.
12. Do you have any other symptoms? Please explain.
no other symptoms of which I am aware, unless you count the
feeling of panic and frustration that comes on when the itching
starts. I don't think its the anxiety that some people have
reported, though. I think it's because I know that nothing will
head this off once it starts, and that I'm going to be miserable
for a while again.
13. Can you tell if you have eaten gluten?
Yes-Itching with or without blisters, and now some GI signs
14. How long does it take you to be aware that you have eaten
gluten? Anywhere from 30 min to 6 hours, on average
15. Do you have any other symptoms which you contribute to your DH
condition? What are those symptoms? Just the new CD symptoms
16. Do you feel that any important questions have been omitted?
If so what are they? Please answer those questions.
Perhaps ask if DH sufferers have any other skin or immune
problems (like my atopic dermatitis, due to allergies to dogs,
cats, rabbits, horses, dust mites, tomatoes) and whether they
complicated the diagnosis (for 29 years my skin problems were
all blamed on atopy, and DH was never considered until i came up
wheat allergic on a skin test)
~~~~~~~~~~~~~~~~~~~~~~~~~~~~21
1. 23 years
2. officially diagnosed
3. 11 years
4. rash
5. yes
6. 3 years
7. very strict
8. if I get accidental gluten I break out in the rash and get severe
diarrhea
9. yes to rash
yes to itch
10. yes to watery blisters
yes to itch as far as I can tell, they itch and scratching causes
more to surface
11. yes to CD symptoms - diarrhea, gas, bloating
12. not that I can tell
13. yes
14. I know in about 1/2 hour that I have eaten gluten
15. no
16. I know that I would be interested if anyone else has thyroid
disease or diabetes
~~~~~~~~~~~~~~~~~~~~~~~~~~~~22
1. How long have you been diagnosed with DH? - Since 1971.
2. If not officially diagnosed, how long do you believe you have
had DH? - Had typical symptoms of herpes blisters on forearms &
lower legs for about 10 months before it was diagnosed. Doctors
originally thought they were due to aircraft oils that I was
frequently exposed to at my work.
3. How long did it take to diagnose DH officially or otherwise?
- About 10 months
4. What were the first symptoms associated with your diagnoses?
- Herpes simplex, itching.
5. Are you on a GF diet? - Yes
6. How long have you been on a GF diet? - Since CS diagnosis about
10 months ago
7. How would you rate your diet? - Some what strict
8. How does your diet affect your symptoms? If it does. Please
explain. - My symptoms seemed to cease on their own about 1 - 2
years after diagnosis. Initially prescribed some medication and
told to avoid salt & seafood. That was about 25 years ago. Very
infrequent * very mild episodes of blisters since. Not aware
that my GF diet has had any effect on my DH condition.
9. Do you get a red rash like symptom? If so does it itch?
- Interesting question. I don't recall a rash with my blisters.
I do however a rash that appears in two locations
(elbow & temple) that returns periodically, without itch.
10. Do you get watery blisters? If so do they itch? Do all the
blisters itch or do some blisters come up with out itching?
- Original symptoms always consisted of itchy watery blisters.
Curiously, but not surprisingly, blisters almost always surfaced
in a nearly perfect symmetrical pattern (if one on left elbow or
forearm, then one on the other elbow or arm in almost exactly the
same location).
11. Do you have typical CD symptoms? Please explain.
- I wasn't aware I had a problem until my GP advised me (at
age 50) that my routine blood work required a further look.
Eventually a biopsy confirmed CD (non-tropical). After beginning
a GF diet I had no symptoms until I inadvertently ingested
gluten. Then the symptoms initially were severe cramps, the
runs, gas and bloating. Now the only symptoms I seem to
experience are bloating and occasional diarrhea.
12. Do you have any other symptoms? Please explain.
- I do sometimes experience tingling & numbness of my right
arm that I believe may be due to vitamin shortages (based on a
recent posting to the Celiac site).
13. Can you tell if you have eaten gluten?
- I know I take gluten weekly in a very small amount at church in
communion. I believe my frequent bloating is due to that weekly
intake. Otherwise I have had a bad episode of severe cramps &
dry heaves that was caused by either a very small sampler bite of
sausage or fresh oranges. I do not want to experiment to
determine which was the culprit, for awhile anyway.
14. How long does it take you to be aware that you have eaten gluten?
- Within 2 - 3 hours normally but the above severe cramps seemed
to be about 10 - 12 hours after eating something that tore my
stomach up (gluten I believe or possible reaction citric acid
from the oranges (2 large 'uns).
15. Do you have any other symptoms which you contribute to your DH
condition? What are those symptoms?
- Not that I'm aware of since my CS diagnosis. However, after my
DH diagnosis 25 years ago I have been diagnosed with Hashimoto's
thyroiditis (about 20 years ago) & Sarcoid (about 15 years ago)
and a couple other conditions that I believe could be tied to DH
(or CS).
16. Do you feel that any important questions have been omitted? If
so what are they? Please answer those questions.
- Great survey. Possible additional info might be if parents
also were known or suspected of being either DH or CS and if so
were their symptoms similar to the next generation's CS or DH
carrier? Unfortunately both of my parents died of cancer before
I became aware of CS.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~23
1. How long have you been diagnosed with DH? 16years
2. If not officially diagnosed, how long do you believe you have
hadDH?
3. How long did it take to diagnose DH officially or otherwise?
16 months (or so)
4. What were the first symptoms associated with your disease?
Rash
5. Are you on a GF diet? No
6. How long have you been on a GF diet?
7. How would you rate your diet? Very strict...... Some what
strict......... Casual........... Off and on..............
8. How does your diet affect your symptoms? If it does. Please
explain.
9. Do you get a red rash like symptom? If so does it
itch? I do get a red rash, and it used to itch when I was in
my teens, but not so much anymore.
10. Do you get watery blisters? If so do they itch? Do all the
blisters itch or do some blisters come up with out itching?
Yes, I get watery blisters. They do not itch at all.
1. Do you have typical CD symptoms? Please explain. I am still
learning about CD.
12. Do you have any other symptoms? Please explain.
Tremendous amounts of flatulence, blood blisters "in" my
knuckles.
13. Can you tell if you have eaten gluten?
14. How long does it take you to be aware that you have eaten
gluten?
15. Do you have any other symptoms which you contribute to
your DH condition? What are those symptoms? see #12
16. Do you feel that any important questions have been omitted?
If so what are they? Please answer those questions.
What medication, if any, are you taking? How much?
Dapsone, 50mg per day. What medication, if any, have you taken
in the past?
How much Sulfapyridine (sp?), sulfasalizine, 500mg per day
~~~~~~~~~~~~~~~~~~~~~~~~~~~~24
1. How long have you been diagnosed with DH?
HAVE NOT BEEN DIAGNOSED, BUT ONCE WAS PUT ON DAPSONE
FOR BLISTERS ON MY CHEST. THAT WAS ABOUT 2 YEARS AGO.
2. If not officially diagnosed, how long do you believe you have
hadDH? MORE THAN TWO YEARS
3. How long did it take to diagnose DH officially or otherwise?
N/A
4. What were the first symptoms associated with your diagnoses?
ITCHING ON MY NECK. I NOW HAVE EXTREME IRRITATION ON
MY HANDS, ANKLE,
INSIDE OF MY ELBOWS AND ON MY NECK.
5. Are you on a GF diet? YES.
6. How long have you been on a GF diet? FOR ABOUT TWENTY-FOUR
YEARS, BUT MORE STRICTLY FOR THE PAST 15 YEARS.
7. How would you rate your diet? Very strict.xxx To Some what
strict..xxx....... Casual........... Off and on..............
8. How does your diet affect your symptoms? SO SEVERLY THAT IF I
DON'T STICK TO IT, I NEED TO GO TO THE HOSPITAL If it does.
Please explain. ABOUT TEN YEARS AGO, I REALLY WOULD GET .
INCREDIBLY SICK IF I ATE GLUTEN - DIARRHEA, VOMITING,
MIGRANE, EXTREME PAIN AND MORE. I NOW HAVE REACTIONS
TO OTHER FOODS AND THE DOCTOR SAYS I ALSO NOW HAVE
IRRITABLE BOWEL SYNDROME AND AM LACTOSE INTOLLERENT.
9. Do you get a red rash like symptom? NO, THE ITCHING STARTS
FIRST AND THEN I SCRATCH UNTIL IT BLEEDS. If so does it itch?
10. Do you get watery blisters? NO, EXCEPT WHEN I HAD THE BLISTERS ON
MY CHEST. THEY DID ITCH. If so do they itch? Do all the
blisters itch or do some blisters come up with out itching?
11. Do you have typical CD symptoms? YES, I WAS DIAGNOSED OVER 24
YEARS AGO, AFTER SUFFERING FROM EXTREME PAIN, DIARRHEA,
LOSS OF WEIGHT, VOMITING, ETC. BEING GLUTEN FREE, I THEN
GAINED WEIGHT UNTIL RECENTLY WHEN OTHER PROBLEMS AROSE.
12. Do you have any other symptoms? YES, AS I MENTIONED ABOVE, I AM
NOW LACTOSE INTOLLERENT AND HAVE IRRITABLE BOWEL . ..
SYNDROME.
13. Can you tell if you have eaten gluten? I SURE CAN.
14. How long does it take you to be aware that you have eaten gluten?
ALMOST IMMEDIATELY. MY FOOD PIPE GETS IRRITATED.
15. Do you have any other symptoms which you contribute to your DH
condition? What are those symptoms?
16. Do you feel that any important questions have been omitted? If
so what are they? Please answer those questions.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~25
#1 Never diagnosed.
#2 Approximately 10 years.
#3 9 years.
#4 Flaky skin around my nostrils W/reddening that worsened over the
years.
#5 Predominately GF but symptoms did not subside until I went off all
complex carbohydrates including rice, potatoes, corn, spelt, etc.
#6 Approximately 1 year.
#7 Somewhat strict. I breakout if I get too carried away.
#8 Severe constipation and unsightly nose rash, bloating, especially
abdominally.
#9 Yes Re: red rash Not really Re: itch
#10 Mildly. Not a lot of itching.
#11 No. I never suffered from diarrhea, only severe constipation &
bloating w/rash.
#12 No other symptoms except a lot of sinus congestion before diet
change.
#13 Yes, especially if I eat a lot of the wrong foods.
#14 A day or two.
#15 No.
#16 No.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~26
1. How long have you been diagnosed with DH?
Never officially diagnosed, usually misdiagnosed as shingles.
2. If not officially diagnosed, how long do you believe you have
hadDH? I've had the rash, itching and blisters for about 8
years. I'm 52 years old.
3. How long did it take to diagnose DH officially or otherwise?
I've started to recognize it in the past 2 years after I joined
this listserver.
4. What were the first symptoms associated with your diagnoses?
Sore patches on my skin, usually on my butt, abdomen, back and
arms. It feels like you've got a bad sunburn.
5. Are you on a GF diet? I try to stay away from bread, but it's
difficult.
6. How long have you been on a GF diet? Never, seriously
7. How would you rate your diet? Very strict...... Some what
strict......... Casual........... Off and
on.....X.........
8. How does your diet affect your symptoms? If it does. Please
explain. If I load up on glutens, I first get the sore skin,
than a rash, followed by blisters and a couple weeks for healing.
The outbreaks occur in the same places on my butt, the scars take
months to heal and usually I'll get another outbreak before they do
heal completely.
9. Do you get a red rash like symptom? If so does it itch?
Yes, it itches a lot.
10. Do you get watery blisters? If so do they itch? Do all the
blisters Yes, most of them itch a lot. Often times they don't
itch at all. It depends on how severe the outbreak is
11. Do you have typical CD symptoms? Please explain.
Yes, I have frequent sinus headaches, ringing ears, fuzzy
memory, blurry vision, bloating diarrhea, muscle cramps and
joint pain.
12. Do you have any other symptoms? Please explain.
I have frequent prostate problems that seem to be associated
with the CD and DH symptoms.
13. Can you tell if you have eaten gluten?
Usually, yes I can. Lately, I've been experimenting eating
gluten foods to see if I can reproduce the symptoms. I guess
I'm trying to make sure I've got CD before I go on a GF diet. I
find it's harder to control my eating than it was to quit smoking.
14. How long does it take you to be aware that you have eaten
gluten? The bloating, then diarrhea happen within hours. The fuzzy
vision and memory loss happen within hours too. The other symptoms
seem to be cumulative. I'll often go for several weeks without an
outbreak but then it hits me, the sore skin, aches, rashes itching
and blisters. I'll get headaches so bad I'm bedridden. I'll lay off
glutens until I feel better, usually a week or two. Then I start
cheating on the diet again and the cycle just repeats itself.
15. Do you have any other symptoms which you contribute to your DH
condition? What are those symptoms? Anytime I get run down, the
problems just get worse. I almost always have an outbreak if
I've got a cold or the flu.
16. Do you feel that any important questions have been omitted?
If so what are they? I think you should know I'm a white male
(Norwegian), 52 years of age, slightly overweight but otherwise in
good shape. I drink moderately (Rumor Tequila), don't smoke and
live in a community of 1.2 million people. It seems my whole family
has similar problems, as do my parents and my children .
~~~~~~~~~~~~~~~~~~~~~~~~~~~~27
1. How long have you been diagnosed with DH?
I have not been officially diagnosed. I had a biopsy
done but the results were inconclusive (neither positive nor
negative).
2. If not officially diagnosed, how long do you believe you
have hadDH? For about 2 years.
3. How long did it take to diagnose DH officially or
otherwise? Because I have known I was a celiac for over 17 years, I
suspected it right away. I STILL have not been able to conclusively
confirm it (or to rule it out). Because I ALSO have hemochromatosis
(confirmed by gene testing, liver biopsy and numerous blood tests) I
suspected that it might be porphyria (porphyria cutanea tarda) but I
have been tested for porphyria on a number of occasions while the
lesions were active and these tests have always been negative.
4. What were the first symptoms associated with your diagnoses?
Clear blisters that became infected after breaking.
Although they did not burn very much at first, the burning
progressively gets worse and is now VERY bad.
5. Are you on a GF diet?
A VERY gluten free diet: NO processed foods, no grains of
any type (not even corn or rice), all food prepared by MYSELF. The
only possible hidden exposure is through inclusion in nutritional
supplements (which I take many of and attempt to screen - but
NOTHING is 100% sure when it comes to gluten free! I even get
necessary pharmaceuticals compounded with active ingredients
only. I have occasionally (every 3 or 4 months) tried to find a
chocolate bar that will not cause problems, but no matter HOW
carefully I check them out, they always seem to cause a reaction.
I had to give up eating apples and green peppers because
something they put in the wax makes me sick (unless the
peppers are home grown and unwaxed. THEN there's no problem.
6. How long have you been on a GF diet? about 18 years (with
rare "blind testing" (due to accidental exposures) and
deliberate self testing on 3 occasions (never again!).
7. How would you rate your diet? Very strict...X... Some
what strict......... Casual........... Off and on...
Very VERY strict! About as strict as you can get, short of
growing all my own food (which I am trying to do if I can get
garden space!) I have even decided to give up on trying to find
an acceptable chocolate bar - just not worth it.
8. How does your diet affect your symptoms? If it does.
Please explain.
Once I accidentally ate some Bryers "chocolate cookie" flavor
ice cream (thinking it was "mint chocolate chip" flavor and so
ingested the equivalent of about 1/4 of an oreo cookie. Three hours
later I had the gas, swollen belly, bulky stool (which was much
thinner than normal (which I interpret to mean that my intestinal
lining was probably quite swollen), unformed, pale, etc. I felt
*extremely* fatigued, got the blisters on the skin, etc. and had
difficulty concentrating on anything. (The extreme headaches
seem to only occur after repeated exposures within a relatively
short period - some sort of cumulative effect.) My urine also went
clear (which means I'm not getting any B vitamins).
9. Do you get a red rash like symptom? No. If so does it
itch?
10. Do you get watery blisters? Yes. If so do they itch?
It's more like a BURNING sensation. (Makes you want to do
ANYTHING to just get it to quit - if you ONLY knew WHAT to do!)
Do all the blisters itch or do some blisters come up with
out itching? Sometimes they don't seem to itch (or rather,
BURN) at first. But they will start later.
11. Do you have typical CD symptoms? Please explain.
Yes. Gas, bloating, pale, bulky, unformed, frequent, HIGH
volume stools, extreme fatigue, trouble concentrating, and, the
last several years, blisters that **BURN** (especially if any pressure
is applied to them).
In the initial case (before gluten free diet) I lost 32 lbs (from a
very lean 164 down to SCRAWNEY 132), had literally every B vitamin
deficiency symptom in the book (to a SEVERE degree) with the SOLE
exception of the "butterfly rash" (probably only because I had not been
in the sun due to EXTREME photophobia). And numerous other deficiency
symptoms as well: white spots on nails (low zinc?), other nail
abnormalities, muscle spasms in sleep (broke toe kicking the wall in my
sleep), SEVERE ataxia, SEVERE tintinitis, SEVERE loss of short term
memory, SEVERE inability to concentrate, SEVERE loss of balance, SEVERE
numbness in extremities, and on and on and on. (ALL mental and
neurological symptoms TOTALLY disappeared within days of going gluten
free and taking MEGAdoses of B-complex (The BEST thing that even
happened to me in my life! WHY can't the idiot doctors on the list
appreciate the importance of NUTRITIONAL supplementation in cases of
malabsorption?!? This should be a **no-brainer**!)
12. Do you have any other symptoms? Please explain.
Yes. ANGER! At a society with such total contempt for consumers
rights that it is virtually impossible to accurately determine if even
pharmaceuticals are gluten free! At hospitals that are so incredibly
poorly run that they cannot even get a gluten free diet even REMOTELY
close to right. At doctors who show a total lack of concern that
patients are unable to determine whether or not drugs prescribed have
inactive ingredients that they have adverse reactions to. (The
prevailing attitude seems to be "if we didn't **intend** it, it doesn't
count".)
This IS a symptom! The ABUSE inflicted on celiacs (and OTHER
conditions as well!)by society and the medical profession probably
causes them more problems than the conditions themselves.
13. Can you tell if you have eaten gluten?
I have NEVER had the experience of eating gluten without having
a response (I have on a number of occasions eaten it unknowingly
and had a response and then determined after VERY careful checking
that there was gluten (or some form of grain) in what I ate. (In
my case, ALL grains seem to cause reactions). I have never
discovered that something I ate unknowingly had gluten in it on a
occasion when I had NOT had a reaction.
14. How long does it take you to be aware that you have eaten
gluten?
Depends on how much. Usually a few hours. The larger the
amount the faster the reaction.
15. Do you have any other symptoms which you contribute to your DH
condition? What are those symptoms?
I am not sure, but I think that a lot of exposure to sun
makes it worse (and it always seems to occur in sun exposed areas
(this is why I suspected PCT - but then I always tested negative for
that).
16. Do you feel that any important questions have been omitted?
Yes! If so what are they? Please answer those questions.
1) What do you feel that the medical profession SHOULD be
doing for this condition (and others)but is NOT doing?
**1) Making it possible to know what ALL the
ingredients in pharmaceuticals are. (That they have NOT done
so is truly incomprehensible! Shows that, in truth, NO ONE is
"minding the store".)
**2) Making it possible to get a truly gluten free diet in a
hospital. (same comment as for #1!)
**3) Utilizing nutritional supplementation in the treatment of
malabsorption syndromes. (same comment as for #'s 1 and 2).
**4) Insuring that general practitioners are competent to
detect celiac disease symptoms and refer them for proper
evaluation (AND hemochromotosis and all the OTHER medical
conditions that are GROSSLY (over 90%!) UNDER diagnosed!)
(same comment as for #'s 1 and 2 and 3. Looks like there's a
PATTERN forming here!) .
**5 thru god only knows how many) Changing the organizational
structure of medicine so that SOMEONE is responsible for
seeing that medical knowledge is used EFFECTIVELY for the BENEFIT OF
THE Patients (instead of just for making profits for doctors,
pharmaceutical companies, hospitals, etc.).
~~~~~~~~~~~~~~~~~~~~~~~~~~~~28
1. How long have you been diagnosed with DH? Never
2. If not officially diagnosed, how long do you believe you have hadDH?
The first obvious breakout was about 1952
3. How long did it take to diagnose DH officially or otherwise? Never
4. What were the first symptoms associated with your diagnoses?
Itching to the point of hysteria for days everywhere my skin touched
any kind of grass
5. Are you on a GF diet? Yes
6. How long have you been on a GF diet? Seven months
7. How would you rate your diet? Very strict..XXXX.... Some what
strict......... Casual........... Off and on..............
8. How does your diet affect your symptoms? Reduces itching so I don't
tear skin off in my sleep. If it does. Please explain.
9. Do you get a red rash like symptom? Maybe a little pink, but mostly
little bumps. If so does it itch? OF COURSE!!!
10. Do you get watery blisters? Occasionally. If so do they itch? Yes
Do all the blisters itch or do some blisters come up without
itching? ?????
11. Do you have typical CD symptoms? Mostly opiod reactions and autism.
Gets more "typical" when I eat more grains than usual.
12. Do you have any other symptoms? Memory loss, inability to do math,
drop attacks, constipation unto death, skin that looks like it is
rotting off, etc Please explain.
13. Can you tell if you have eaten gluten? Yes. I start losing my
memory and can't think without huge effort.
14. How long does it take you to be aware that you have eaten gluten? I
can't remember
15. Do you have any other symptoms which you contribute to your DH
condition? What are those symptoms?
16. Do you feel that any important questions have been omitted? If so
what are they? Please answer those questions.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~29
1. How long have you been diagnosed with DH? 2 Years
2. If not officially diagnosed, how long do you believe you have
hadDH? Biopsy-diagnosed.
3. How long did it take to diagnose DH officially or otherwise?
Probably my entire life - 48years to date of diagnosis.
4. What were the first symptoms associated with your diagnoses?
Terribly itchy hives.
5. Are you on a GF diet? Yes
6. How long have you been on a GF diet? 2 Years
7. How would you rate your diet? Very strict...x... Some what
strict......... Casual........... Off and on..............
8. How does your diet affect your symptoms? If it does. Please
explain. When I accidentally ingest gluten I will get an outbreak of
DH (along with other CD symptoms.)
9. Do you get a red rash like symptom? Yes If so does it itch? YES!
10. Do you get watery blisters? Yes. If so do they itch? YES
Do all the blisters itch or do some blisters come up with out
itching? Seems like they all itch.
11. Do you have typical CD symptoms? Not the "classic" symptoms. Please
explain. I had severe constipation; my intestinal system shut
down for the most part. Also depression, joint pain, fatigue, \
fuzzy brain, vertigo/dizziness, extremely dry skin, vision problems
(diagnoses of chronic fatigue syndrome and fibromyalgia.)
12. Do you have any other symptoms? Not now. Please explain.
13. Can you tell if you have eaten gluten? Yes
14. How long does it take you to be aware that you have eaten gluten?
Usually within several hours.
15. Do you have any other symptoms which you contribute to your DH
condition? What are those symptoms? See above.
16. Do you feel that any important questions have been omitted? If so
what are they? Not that I can think of. Please answer those
questions.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~30
1. How long have you been diagnosed with DH? 20 years
2. If not officially diagnosed, how long do you believe you have hadDH?
I have had it since 1965ish. It was diagnosed very casually while I
was in the office for something else.
3. How long did it take to diagnose DH officially or otherwise? 10-15
years
4. What were the first symptoms associated with your diagnoses? I had
this on my hands mostly and they were itchy with little blisterie
bumps that would break open, bleed, and sometimes cause infection.
Also on scalp.
5. Are you on a GF diet? yes
6. How long have you been on a GF diet? 13 years
7. How would you rate your diet? Very strict...X... Some what
strict......... Casual........... Off and on..............
8. How does your diet affect your symptoms? If it does. Please
explain. The DH is completely gone. I had this for many years and no
one made the correlation between CS and it. When it was found that I
could not tolerate gluten, one of the many benefits was the absence
of DH.
9. Do you get a red rash like symptom? If so does it itch? yes yes
10. Do you get watery blisters? If so do they itch? Do all the blisters
itch or do some blisters come up with out itching? The blisters
itch like the dickens! Comparable to poison ivy.
11. Do you have typical CD symptoms? Please explain. I have GI
problems, followed by what I call a 5 day withdrawal. When the
diarrhea (sp?) stops, I have itching (everywhere), weakness, sever
headaches, joint aches, basically feel like I've been poisoned.
12. Do you have any other symptoms? Please explain. see above.
13. Can you tell if you have eaten gluten? yes
14. How long does it take you to be aware that you have eaten gluten? It
use to be about 15-30 mins. As the time has gone on that I have been
gluten free it is more like an hour or two.
15. Do you have any other symptoms which you contribute to your DH
condition? What are those symptoms?
16. Do you feel that any important questions have been omitted? If so
what are they? Please answer those questions.
Please answer these questions in the order that they were asked and
add any additional comments which you would like to make at the
end.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~31
1. @ 5 years
2. n/a
3. @ 3 years
4. sudden onset of intensely itchy, blisters and rash on elbows, knees,
posterior :)
5. yes, on GF diet
6. @ 5 years
7. somewhat strict: bend the rules around gravies, sauces...
8. diet has cleared symptoms by 99%- still occasionally get
blisters/rash when I cheat a little too much or eat gluten
unknowingly.
9. YES!
10. YES! all blisters itch
11. yes-nausea, gas, bloating, diarrhea...
12. no
13. not right away
14. 1-3 hours
15. no
~~~~~~~~~~~~~~~~~~~~~~~~~~~~32
1. How long have you been diagnosed with DH? 5 mo. Biopsy.
2. If not officially diagnosed, how long do you believe you have had
DH? N/A
3. How long did it take to diagnose DH officially or otherwise? 3yr.s
4. What were the first symptoms associated with your diagnoses?
Red rash on lower legs.
5. Are you on a GF diet? Yes .
6. How long have you been on a GF diet? 3 mo.s
7. How would you rate your diet? Very strict..X.... Some what
strict......... Casual........... Off and on..............
8. How does your diet affect your symptoms? If it does. Please
explain. Uncertain.
9. Do you get a red rash like symptom? If so does it itch? Yes,
Sometimes
10. Do you get watery blisters? If so do they itch? Do all the
blisters itch or do some blisters come up with out itching?
Yes and most itch!
11. Do you have typical CD symptoms? Please explain. No.
12. Do you have any other symptoms? Please explain. Itchy spots in
hair.
13. Can you tell if you have eaten gluten? No.
14. How long does it take you to be aware that you have eaten gluten?
Uncertain, maybe in 2 or 3 days.
15. Do you have any other symptoms which you contribute to your DH
condition?
What are those symptoms? No.
16. Do you feel that any important questions have been omitted? If so
what are they? Please answer those questions. ???
was on Dapson for about 35 to 40 days and had to stop.
Symptoms were - extremely tired, - depressed, - rapid heart beat,
- heart rate would increase rapidly
with little exertion, - heart pounding in ears, - very emotional
over little things, and occasional pains in heart and kidneys. I
began to feel better after four days off of Dapson and felt fairly
normal after about two weeks. My skin of course suffered.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~33
1. Fifteen years.
2. I was diagnosed.
3. Two years.
4. First red itchy/painful areas over elbows and knees, then blisters,
and then open wounds
5. Yes
6. Fifteen years.
7. Very strict.
8. I become symptomatic with any ingestion at all.
9. Yes, yes
10. Yes, yes, and all come with itching /pain when small.
11. Yes I get diarrhea, gas, and DH.
12. Yes painful joints, depression.
13. Yes
14. In LT 5 min.
15. If I get a skin abrasion my DH comes on. If my DH is active my CD is
affected as well as the reverse.
16. No not at this time. Thanks for your efforts!
Anybody that has read this far has to be interested in this subject ,I
hope that it has been worth your time.
Feedback to the Listowners.
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