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ugoglenncoco

So Confused About My Skin Condition. Could It Be Dh?

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I am 22 year old, asian female.

I've been living in the US since I was about 9 years old.

I've always dealt with skin rashes and such growing up but as soon as I turned 22, my skin has been blowing up with rashes.

They're super itchy, some filled with liquid like blisters but mostly just white bumps that turn slight translucent pink.

If I itch too hard, (which is almost always the case) it bursts open and leaves circular, welt like scars.

My gen. practitioner told me that it could be scabies so I was prescribed Permethrin cream.. which seems to not work..

So I've been doing some research and came across the name Dermatitis Herpetiformis.

I've also read that it's very uncommon among asian ethnicity.. but I took some pictures

http://i1245.photobucket.com/albums/gg597/ugoglenn/2012-05-18224743.jpg

http://i1245.photobucket.com/albums/gg597/ugoglenn/2012-05-18224829.jpg

http://i1245.photobucket.com/albums/gg597/ugoglenn/2012-05-18224725.jpg

http://i1245.photobucket.com/albums/gg597/ugoglenn/2012-05-18224609.jpg

Does this look like DH?

I've been trying to go on a gluten free diet.. but like many weaklings.. i've been cheating.

So any advice helps! Thanks!

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It could very well be dh. It looks like what dh looks like at some stages for lots of people.

Your ethnicity doesn't matter. The stats on the ethnicity are based upon DIAGNOSED celiacs. And we all know that doesn't give the true "big" picture. Not even for those of northern European heritage. We've had numerous African Americans on here who were told by the doc they couldn't be celiac b/c African Americans don't get celiac.

So, the question is :

Do you want to get a diagnosis?

Do you have any other symptoms of celiac? People with dh tend to have less GI symptoms than those without dh. Are there any AI diseases in your family? Diabetes? Thyroid? What?

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You are "challenged" trying to pursue a Celiac/DH dx because of your ethnicity. They are looking at some entirely different genes and antibodies in Japan for Celiac/DH, for example. If different antibodies and genes are being activated that can make it hard for you to be tested.

My advice is to search around PubMed for info on testing in Asian populations. Go prepared to your dermatologist. Take studies. Find a good doctor who will LISTEN to you and is willing to run tests or refer you to a specialist that will listen.

If you can access some of the major research centers I'd try that route - you may have better luck.

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I guess the only reason celiac is uncommon among asians is that most hardly eat wheat. So the few that do and are intolerant are not enough for the statistics.

The way traditional diets are changing for westerniced diets in Asia, gluten intolerance will pop up there too in the future.

If the doctors deny to test you, than you can decide to go gluten free by switching to a rice only diet. But not before you are absolutely sure nobody will test you.

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I guess the only reason celiac is uncommon among asians is that most hardly eat wheat. So the few that do and are intolerant are not enough for the statistics.

The way traditional diets are changing for westerniced diets in Asia, gluten intolerance will pop up there too in the future.

If the doctors deny to test you, than you can decide to go gluten free by switching to a rice only diet. But not before you are absolutely sure nobody will test you.

Most of the research I've seen is in Japan....where they got majorly "wheated" after WWII when they began importing wheat from the U. S. under some agreement....

Anyhow, the train of thought isn't that it isn't there (and that it's so new) but that they aren't testing for it with the right tests, and it's thought to be a Western disease. There is archaeological evidence that wheat and barley was cultivated in Asia (what is now China) around the Silk Road period. One major difference is the VOLUME of wheat that is consumed now compared to hundreds of years ago.

They are just now figuring out where to look (genes and antibodies).

This article may help a bit http://www.wjgnet.com/1007-9327/full/v13/i15/2153.htm

Also, I know I have read about studies, specifically DH, where some different antibodies are found. AND we already know some of the genes are different.

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WOW. And so the plot thickens.

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It could very well be dh. It looks like what dh looks like at some stages for lots of people.

Your ethnicity doesn't matter. The stats on the ethnicity are based upon DIAGNOSED celiacs. And we all know that doesn't give the true "big" picture. Not even for those of northern European heritage. We've had numerous African Americans on here who were told by the doc they couldn't be celiac b/c African Americans don't get celiac.

So, the question is :

Do you want to get a diagnosis?

Do you have any other symptoms of celiac? People with dh tend to have less GI symptoms than those without dh. Are there any AI diseases in your family? Diabetes? Thyroid? What?

hmm. so the docs can deny testing you just because of your ethnicity?

and yes. I would love to get a diagnosis but don't know where to go at this point..

I don't have other symptoms of celiac like diarrhea and fatigue, just intense itching and small bumps that appear and disappear and occasionally burst open.

And my grandma on my mom's side was a diabetic, and my dad also is a type 2 diabetic.. could that have anything to do with it?

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hmm. so the docs can deny testing you just because of your ethnicity?

and yes. I would love to get a diagnosis but don't know where to go at this point..

I don't have other symptoms of celiac like diarrhea and fatigue, just intense itching and small bumps that appear and disappear and occasionally burst open.

And my grandma on my mom's side was a diabetic, and my dad also is a type 2 diabetic.. could that have anything to do with it?

Could and would are two different things. Most DH Celiacs are asymptomatic except for the lovely rash.

There is a link between t1 diabetes and Celiac. Are either of them on insulin? There's a chance they are t1 (or autoimmune) if they are.

Also, you must be eating gluten for 2-3 months prior to testing. Also, have they given you steroids for the rash? Both will interfere with testing.

What ethnicity are you? Are you from the "far east" (the label used in those articles) or India/Southern Asia? There is more documentation in those ethnicities than "far east".

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It sure looks like my DH.I trawled through 1000's of medical/derm website pictures in my first few months and I don't care what anyone says.. it doesn't look like anything else, even scabies. The time it looks like scabies is when we & them have sratched them all to pieces when its been a very bad case of either. So unless you had those big bubbly lesions (DH tends to appear much smaller lesions from what I've experienced/seen) that tends to be scabies you should probably move on from that diagnosis asap IMO.

What areas do you get yours? Mine is all over and seems to have presented in every which thats been described here in the forum. Some areas are not so itchy (face), some are insanely itchy (around my arms/breast/torso/thigh) and others are more of a painful/deep kind of itch (feet/hands/wrist/back of the neck). My son's presents more 'tradionally' though not entirely/always. Elbows, wrists, knees etc.

Read back on these DH topics as much as you can and keep us up to date of appointments/test etc so posters can help you along the way.

Get copies of ALL your labs etc. There isn't much experience with DH in medical community.

But as others have advised you the first question for you is: Do you want or need a diagnosis? Either way, once you've decided, let us know on here and we can all help out with the next steps to help the healing.

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Your rash looks so much like mine!!! In additiona, I had areas of thickened, red, inflammed looking skin, probably from so much scratching. And what did my doctor say I had?? scabies. Ugh. He said I couldn't possibly have dh because dh doesn't itch. (I fired him, doesn't itch my eye, that's the main symptom.) I had a biopsy and that was rather non-specific, didn't say much but did say I don't have scabies or dh. I'm not sure how accurate the testing was, lots of different variables in my case which may have influenced any accurate diagnosis.

Doctors diagnose the obvious . . . if it looks like scabies it probably is in their mind. I've looked at every picture of dh and scabies I can find and one thing is for sure, some of them look exactly alike and some totally different. And some of both look exactly like my rash and some totally different.

If you aren't comfortable with the diagnosis find another doctor who is willing to work with you. Just because dh is rare in someone of Asian descent doesn't mean it is non-existent.

Jane

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It sure looks like my DH.I trawled through 1000's of medical/derm website pictures in my first few months and I don't care what anyone says.. it doesn't look like anything else, even scabies. The time it looks like scabies is when we & them have sratched them all to pieces when its been a very bad case of either. So unless you had those big bubbly lesions (DH tends to appear much smaller lesions from what I've experienced/seen) that tends to be scabies you should probably move on from that diagnosis asap IMO.

What areas do you get yours? Mine is all over and seems to have presented in every which thats been described here in the forum. Some areas are not so itchy (face), some are insanely itchy (around my arms/breast/torso/thigh) and others are more of a painful/deep kind of itch (feet/hands/wrist/back of the neck). My son's presents more 'tradionally' though not entirely/always. Elbows, wrists, knees etc.

Read back on these DH topics as much as you can and keep us up to date of appointments/test etc so posters can help you along the way.

Get copies of ALL your labs etc. There isn't much experience with DH in medical community.

But as others have advised you the first question for you is: Do you want or need a diagnosis? Either way, once you've decided, let us know on here and we can all help out with the next steps to help the healing.

The major areas that I'm experiencing these rashes and itching are mainly on my elbow, forearm, and on the sides of my thighs.

I also have major itching and bumpy blisters (hard, not soft blisters) that appear on my scalp.

my mid chest and belly (above AND below the umbilical cord) seems to be affected as well..

I know scabies attacks the folds of your skin (like finger webs and insides of your elbow)... but those parts on my body aren't itchy..

I do want a diagnosis but i'm scared to go in and get tested since i've been on a gluten free diet since this may..

should i go back to eating gluten?

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Your rash looks so much like mine!!! In additiona, I had areas of thickened, red, inflammed looking skin, probably from so much scratching. And what did my doctor say I had?? scabies. Ugh. He said I couldn't possibly have dh because dh doesn't itch. (I fired him, doesn't itch my eye, that's the main symptom.) I had a biopsy and that was rather non-specific, didn't say much but did say I don't have scabies or dh. I'm not sure how accurate the testing was, lots of different variables in my case which may have influenced any accurate diagnosis.

Doctors diagnose the obvious . . . if it looks like scabies it probably is in their mind. I've looked at every picture of dh and scabies I can find and one thing is for sure, some of them look exactly alike and some totally different. And some of both look exactly like my rash and some totally different.

If you aren't comfortable with the diagnosis find another doctor who is willing to work with you. Just because dh is rare in someone of Asian descent doesn't mean it is non-existent.

Jane

That is so disheartening to hear.. everyone and anyone (even if they're not docs) know that scabies itch like hell..

and sounds like what's happening to you is happening to me as well.

my skin inflames and swells up (you know for some people, if they scratch their skin, the skin inflames) at first (whether they are big bubble-looking inflammations or small, mosquito looking "puffs").

then i scratch until the small bumps burst open and bleed..

they itch SO BAD. and i know scabies tend to get worse at night but mine seems to want to itch whenever it wants to.. no specific time set here..

my skin is covered in scars.. it's summer and I want to wear short sleeve shirts but i can't.

my co-workers freaked out when i showed them my scars because they looked so bad...

have you tried scar creams? if so, what works best? i bought mederma and am hoping it works......

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Could and would are two different things. Most DH Celiacs are asymptomatic except for the lovely rash.

There is a link between t1 diabetes and Celiac. Are either of them on insulin? There's a chance they are t1 (or autoimmune) if they are.

Also, you must be eating gluten for 2-3 months prior to testing. Also, have they given you steroids for the rash? Both will interfere with testing.

What ethnicity are you? Are you from the "far east" (the label used in those articles) or India/Southern Asia? There is more documentation in those ethnicities than "far east".

I'm actually from South Korea.. which I've read from one of your articles (thanks btw) that it's more common there?

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Well, if going back on gluten isn't possible (meaning you've noticed a difference in your body you attribute to gluten-free) you need to look into the posts in the DH section about salicylates and iodine. If your rash is DH, and it isn't receding gluten-free, then you probably have a secondary issue - perhaps one of those two.

Yes, you must be eating gluten for testing.

The benefit of a Dx would be, in your case, the drug Dapsone. Dapsone could help snuff the rash while the gluten antibodies fall.

The negative is that you must go back on gluten - which may make your rash go even crazier.

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My rashes looked exactly like that last summer. It was not until this year that I experienced horrible GI problems.

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Hi there, 

I think you have keratosis pilaris & possibly Dermatillomania.  

I suggest taking epsom salt baths 2x a week and really really REALLY exfoliating your skin. Head to toe. With super scrubby exfoliating gloves. 

And try not to pick or even touch your skin at all with your finger nails. Ever. 

Use coconut oil head to toe after bathing. 

Or, try making a body scrub with salt, coconut oil and an essential oil of your choice. This way you can exfoliate and moisture in the same step. Super easy.

I hope this helps you. 

I think we have similar skin...... And this worked well for me. 

Edited by namasnight

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Hi there, 

I think you have keratosis pilaris & possibly Dermatillomania.  

I suggest taking epsom salt baths 2x a week and really really REALLY exfoliating your skin. Head to toe. With super scrubby exfoliating gloves. 

And try not to pick or even touch your skin at all with your finger nails. Ever. 

Use coconut oil head to toe after bathing. 

Or, try making a body scrub with salt, coconut oil and an essential oil of your choice. This way you can exfoliate and moisture in the same step. Super easy.

I hope this helps you. 

I think we have similar skin...... And this worked well for me. 

This post was from 2012, please check the dates on post.

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