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How Many Have Dh, Really?


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#16 takeiteasy

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Posted 02 August 2011 - 03:47 PM

[quote name='WestyPDX' timestamp='1310571089' post='716107']

As a celiac and DH patient, I believe we need to be honest with ourselves and others about these conditions. It's the only way to be taken seriously by the medical community. To plant a suggestion that a DH patient stands a good chance of not being treated properly at a dermatologist I believe sends the wrong message to celiac patients. It sets up an expectation of failure before they even get to the doctor's office.

When I went to the derm lab at OHSU, a major teaching hospital on the west coast, they knew what it was when I walked in the door. But the teaching doctor on duty had me hang around so he could round up a group of residents to see it first hand. Most of them had only seen pictures of it. A real live DH patient is that rare of an event for them.


I live in Rockland County, New York. I went to see my regular doctor in 2004(specializes in GI)& complained of stomach problems, diarrhea, gas, excruciating pain, etc. He sent me to have a colonoscopy & upper-endoscopy & biopsy of stomach. All tests came back negative. I just called the lab yesterday to ask whether the pathologist was looking for celiac and the answer, to my shock was no. Then in 2005 I went to the same doctor with a sudden skin condition which started out looking like mosquito bites, but would not go away. He sent me to a well known dermatologist locally, who had my skin lesions biopsied. He had the other doctor on board look at my skin and both just shook their head without a clue. My regular doctor knew of my stomach condition and never made the connection. Between then and now I went to more than one GI and more than one dermatologist and none made the connection between my stomach condition and skin and none suggested that I might have celiac. It wasn't until recently, when I was diagnosed with possible "skin lupus" that I went to see a dermatologist at NYU in Manhattan, NY, Dr. Andrew Franks. He specializes in - ready? Lupus! -. He studied my previous tests (whatever I was able to get over to him) and told me in no uncertain terms that I do NOT have Lupus and that I have celiac. After 7 years of seeing doctors he was the only one that recognized my skin as being DH. And this is in New York.
The most recent GI that I'm seeing now, is affiliated with Mount Sinai Hospital and specializes in celiac and told me that for the first 10 years of his practice he is guilty of not diagnosing a single patient with celiac and he still doesn't care for patients with DH. How archaic!!!!!! It is so depressing. All I want him to do is discuss my options for medication for DH and other issues I'm experiencing with my stomach not getting altogether better. I can not afford to go back to Dr Franks as he does not take insurance, however, I might just be forced to go back to him if this local guy won't accept my diagnosis. For now, he doesn't absolutely accept that I have celiac, and wants me to send him all of my previous lab results...so I start over again. It's amazing how little is known about this disease. their attitude is basically, you're not dying, you don't need surgery, so you'll be ok. NO! I'm not ok!!! I'm living a very debilitating lifestyle, but who cares?!
Isn't it nuts?

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#17 ravenwoodglass

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Posted 02 August 2011 - 04:20 PM

The most recent GI that I'm seeing now, is affiliated with Mount Sinai Hospital and specializes in celiac and told me that for the first 10 years of his practice he is guilty of not diagnosing a single patient with celiac and he still doesn't care for patients with DH. How archaic!!!!!! It is so depressing. All I want him to do is discuss my options for medication for my DH and other issues I'm experiencing with my stomach not getting altogether healthy. I can not afford to go back to Dr Franks as he does not take my insurance. I might just be forced to go back to him though if this local guy won't treat me. This one also doesn't absolutely accept that I have celiac and wants me to send him all of my previous lab results...so I start over again. It's amazing how little is known about this disease. their attitude is basically, you're not dying, you don't need surgery, so you'll be ok. NO! I'm not ok!!! I'm living a very debilitating lifestyle, but who cares?!
Isn't it nuts?


The best medication you can get for DH is avoiding gluten and iodine until the rashes clear. The other option is dapsone, which can be a pretty toxic med.
How long have you been gluten free? It can take a long time for the antibodies to clear the skin and you need to be very strict with the diet and very careful about CC to keep new outbreaks from happening. It is also a good idea for folks with DH to avoid topical gluten in toiletries. I hope you heal quickly but be patient and be strict as it can take some time. If you have been strictly gluten free and are still having GI issues you may have an additional intolerance or another problem that is not gluten related.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#18 a1956chill

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Posted 02 August 2011 - 04:38 PM

As a celiac and DH patient, I believe we need to be honest with ourselves and others about these conditions. It's the only way to be taken seriously by the medical community. To plant a suggestion that a DH patient stands a good chance of not being treated properly at a dermatologist I believe sends the wrong message to celiac patients. It sets up an expectation of failure before they even get to the doctor's office.


In my case The chance of not being treated properly is not a suggestion it is a reality.
I had my first outbreak of what I now know is DH at 17 , I am currently 54. It was not until WELL after my celiac diagnoses that the dermatologist would even consider that my rash was DH. You could almost see the light bulb turn on when he FINALLY made the connection.

I have dealt with doctor for 40+ years that had no clue what was happening to me.I do not think being honest and saying that most doctors do not recognize DH is setting anyone up for failure before even getting into the doctors office. I believe it is simply saying Most doctors do not recognize DH when they see it.If you are not satisfied with your doc's opinion get second opinion.
As with celiacs the treatment for DH is diet. Eat gluten free and watch the amount of iodine you consume.
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Gluten free Oct/09
Soy free Nov/10

numerous additional intolerances,, i.e. If it tries to kill me I do not eat it .
After 40+ years of misdiagnoses I was diagnosed with:
Dermatitis Herpetiformis : Positive DH biopsy...... Celiac :based on DH biopsy and diet response.

Osteoporosis before  age 50
Hashimoto's thyroiditis disease .

Diagnosed type 2 Diabetes 

Osteoarthritis

Gilbert's Syndrome , confirmed by gene testing


#19 eatmeat4good

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Posted 02 August 2011 - 06:44 PM

I saw 3 heads of Dermatology at 3 different University Hospitals in 2 states. Also saw many internists....NO ONE could diagnose DH. Classic looking mosquito bite lesions, weep and ooze and burn at night. Never heal...sometimes blister sometimes welt sometimes scab...but never heal. Only diagnosis I got was neurotic excoriation. The excoriation pattern should be a clue that it is DH. Seeking medical diagnosis for 7 years did ...absolutely nothing but deplete my wallet. I had to find it here. Thank God for the people who write about their DH here...I would never have been diagnosed. Mine is on my face and the back of my neck. Sometimes on elbows and lower back. Only thing that helps is gluten free. Absolutely no trace gluten or I react for weeks. Also I MUST limit iodine...or the antibodies keep active. NO the Dr.'s are not knowledgeable about DH and I believe it is grossly and vastly underdiagnosed. Incidentally although all current literature says it is extremely rare, the original Dr. who wrote about this condition Dr. Duhring (It used to be called Duhring's Disease) said that it could occur on any part of the body including the face. He never learned the cause was gluten but he did document the tormented pain and itching associated with the lesions. Why they lost the fact that it can occur on the face is beyond me. What is also interesting is my son had it on his face at age 11. But all information said it was extremely rare in childhood and almost never occurs on the face. This deterred me from self-diagnosing the two of us for a long time. Only after several many Dr.'s couldn't figure it out and treated him for fungus repeatedly with no results...did I decide that it might be extremely rare....but it might be US! It was. The rash goes away unless any tiny trace gluten is accidentally consumed. To any who suspect DH, it is worth the try....don't listen to those who caution against self-diagnosing this. It is the only way some of us will get help. Read, Read, Read....because the Dr.'s aren't reading about this condition.
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Healing is a matter of time, but it is sometimes also a matter of opportunity.
--Hippocrates

#20 Hopeful1950

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Posted 02 August 2011 - 09:34 PM

Eatmeat4good:

AMEN!!! None of us would recommend not trying to find a doc who can help, but you finally have to take the bull by the horns and take care of yourself. If a person has suffered for years and is not getting answers what harm can a gluten free diet do? It certainly can't hurt! If I had just been more proactive I would have saved myself 8 years of itching, oozing, stinging, scarring, suffering in long sleeves and long pants in 100% heat, isolation, depression, shame, exhaustion from not sleeping due to the itching. If I had gone gluten free 6 years ago, I would be in Hawaii right now rocking my bikini instead of locked up inside hiding my ruined skin. Instead of asking how many really have DH, maybe the question should be how many of us are lucky enough to get a diagnosis early in the course of the disease? I always wonder how many people are suffering in silence the way I have.

Thank God for this forum. I think we could give seminars to the doctors! :lol:
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#21 Violett

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Posted 13 August 2011 - 09:31 AM

Having a DH scalp itch that drove me out of my mind is how I found out I am gluten intolerant. A derm doc diagnosed psoriasis and sent me home with 2 scrips for a shampoo and a spray that each cost $300. So $600 later. I had the money at the time and thought I had no other choice but to pay it. Going crazy with itch. I would not rest so I figured this out myself. Beer is the biggest offender. Two beers and I'm inching again. So gluten free I am. I also have Hoshimoto thyroid. Another hard to diagnos auto immune disease. Doctors and insurance need to wake up
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#22 schelbo

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Posted 21 August 2011 - 11:09 PM

and like i said in the rest of my comment- many probably go undiagnosed because they dont know what it is.. and that even many dermatologists dont know what it is.


I've been misdiagnosed for 27 yrs.
Same symptom moving around my body. Doctors throwing steroids and creams at me.
I think it's way higher than any of us can imagine. It just has different effects on people.
Gluten is a humongous industry. It's in our National Anthem for goodness sake.
Can you imagine if the FDA banned it? War would break out!
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#23 maitrimama

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Posted 27 September 2011 - 06:13 PM

Thx sooo much WestyDPX and Hopefull1950 for all your well written information. Your organized thoughts have helped me to see the celiac/dh conundrum in a different way. In the end it doesn't matter whether I have a formal diagnosis or not. I have choosen to be gluten free and if that positively effects my life and well being than great!
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#24 rosetapper23

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Posted 30 September 2011 - 09:03 PM

I personally have met many celiacs....and MANY of them had DH. I have seen it be the norm rather than the exception. I recall reading how only 1% of celiacs had DH, and I just couldn't believe that figure. In my family alone, I, my uncle, and my son have DH. Of the four people at my place of employment, two out of the four celiacs have DH. I believe it is simply underdiagnosed, and when more studies are done, the true number will come to light.
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#25 pricklypear1971

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Posted 30 September 2011 - 09:16 PM

Does anyone know of another skin disorder/rash that resolves with gluten and iodine withdrawal??? I'd love to read about it! Iodine allergy is the only other disorder I can find that responds to iodine withdrawal.

I can't figure out how they only dx it with a test that is up to 37% false negative rate. Why don't they dx it by iodine withdrawal, also?
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#26 cassP

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Posted 04 October 2011 - 09:21 AM

Does anyone know of another skin disorder/rash that resolves with gluten and iodine withdrawal??? I'd love to read about it! Iodine allergy is the only other disorder I can find that responds to iodine withdrawal.

I can't figure out how they only dx it with a test that is up to 37% false negative rate. Why don't they dx it by iodine withdrawal, also?


oh yes- gluten intolerance can cause &/or exacerbate many many skin disorders- including excema, psoraisis, acne, dandruff.. etc..

all excema i had in the past would disappear when i removed wheat from my diet (not even all gluten).... i am now gluten free- and my excema on my knuckles is STILL there- but my system is so so so much more sensitive then before- and also reacts to corn & dairy- so maybe that's why.
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1986- Elevated Speckled ANA/no Lupus.negative Sjorgens
2008- AntiGliadin IGA/IGg~ Negative,TTG IGA/IGg~ Weak Positive, Endomysial Antibody~ Positive, IGA Deficient.
no biopsy (insurance denied)
6/2010- Enterolab Gene Test:
HLA-DQB1 Allele 1 0302
HLA-DQB1 Allele 2 0302
HLADQ 3,3 (subtype 8,8)
7/2010- 100% Gluten Free
8/2010- DH
10/2010-Hypothyroid dx-> 12/2010 Hashimoto's dx + 1/11- Graves dx :(

#27 pricklypear1971

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Posted 04 October 2011 - 09:36 AM

oh yes- gluten intolerance can cause &/or exacerbate many many skin disorders- including excema, psoraisis, acne, dandruff.. etc..

all excema i had in the past would disappear when i removed wheat from my diet (not even all gluten).... i am now gluten free- and my excema on my knuckles is STILL there- but my system is so so so much more sensitive then before- and also reacts to corn & dairy- so maybe that's why.


I understand there are other skin problems linked with gluten.

What I would like to know is if there are others that resolve specifically with withdrawal of iodine on top of gluten withdrawal. My rash would get "better" on gluten-free diet, but withdrawing iodine was like smothering the fire. Now that I'm over a month low-iodine I can add iodine foods back, in moderation, without recurrence. If I add too much iodine a spot starts to flare up - this can be milk, salt, carageenan based iodine - not specific to one food group.

So, I still would love to know if there are other rashes that respond to iodine withdrawal on top of gluten withdrawal - except iodine allergy (which i'm pretty sure isn't the cause of my other issues or the rash).

My rash, in all it's glory, is liquid-filled and acts like DH. My low-iodine diet has been very successful - so much so there isn't anything to biopsy. I'd like to be prepared next time it flares to request specific tests in addition to DH to get the most accurate dx.

I also can't figure out why, if iodine/gluten withdrawal is so specific, why it isnt part of the dx.
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#28 Jenniferxgfx

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Posted 05 October 2011 - 08:54 PM

Iodine is required for the chemical reaction taking place in the skin from a gluten response. Limiting iodine exposure while healing gives the lesions a better chance at healing up.... Eventually when healed or mostly healed, iodine might be reintroduced and see how it goes. I don't know of any other skin conditions that work this way, although an iodine allergy may cause hives.

I talked to an allergist recently and he was familiar with dh but not at all with the iodine connection. He's the only doc out of dozens who even knew about dh, so I don't think this is common knowlege at all.
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glutenfree since 6/2011. sick for 30 years.

borderline blood test, negative biopsy.

SEVERELY sensitive celiac with DH. sensitive to contact and ingestion.

asthma (was severe; improved exponentially after 6/11)

spina bifida & childhood SCI at L4/L5 (possibly complicated by weak bones)

countless fractures and infections.

i once listed over 100 symptoms or conditions that improved or were eliminated after 6/11.

very vegan. and, of course, i've also discovered some other food allergies.


#29 pricklypear1971

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Posted 05 October 2011 - 09:28 PM

Iodine is required for the chemical reaction taking place in the skin from a gluten response. Limiting iodine exposure while healing gives the lesions a better chance at healing up.... Eventually when healed or mostly healed, iodine might be reintroduced and see how it goes. I don't know of any other skin conditions that work this way, although an iodine allergy may cause hives.

I talked to an allergist recently and he was familiar with dh but not at all with the iodine connection. He's the only doc out of dozens who even knew about dh, so I don't think this is common knowlege at all.


My derm knew about the iodine connection...but didn't recognize my rash as DH. Granted, it did change "personalities", and I do remember him asking if the bumps had liquid in them..... At the time I didn't think so (that was when I used corticosteroid cream -and it made them look and act differently).

The first outbreak I had after getting off the steroids -I thought I was sweating out a fever, the blisters were popping over and over for days -since the rash is under my arms, and I was freaked out, I thought I was sweating!
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#30 Jenniferxgfx

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Posted 06 October 2011 - 08:28 AM

I've had that "I think I'm sweating but I'm not hot" reaction too. I can't believe how many years it took to figure it out. :( I read about dh years ago, too, and it seemed so obscure and doctors kept saying the only thing wrong with me was my fatness. I believed them, over and over. And it was dh all along!

I used to eat a lot of iodine-heavy food too. (seaweed especially!) I had no idea why my skin would get so much angrier after a vegetable meal that seemed free of irritants.

I'm glad I know now, but dh was quite a mystery for a long time.
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glutenfree since 6/2011. sick for 30 years.

borderline blood test, negative biopsy.

SEVERELY sensitive celiac with DH. sensitive to contact and ingestion.

asthma (was severe; improved exponentially after 6/11)

spina bifida & childhood SCI at L4/L5 (possibly complicated by weak bones)

countless fractures and infections.

i once listed over 100 symptoms or conditions that improved or were eliminated after 6/11.

very vegan. and, of course, i've also discovered some other food allergies.



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