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Does This Look Like Dermatitis Herpetiformis To You?


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29 replies to this topic

#1 MerrillC1977

 
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Posted 20 September 2011 - 09:17 AM

I have gotten a rash a few times now over the past couple of years. The first time I went to the doctor about it (primary care physician), he thought it was scabies, and prescribed Permethrin Cream. The cream "seemed" to work, but the rash recurred....many months after the first time the rash appeared, and I used the leftover cream again. I now have the rash again, for the third time in a couple of years. EDITED TO ADD: After reading some more posts on this section of the forum, I am reminded that I (for several years now) have been getting a similar, but milder, rash on my fingers...which I chalked up to humidity/seasons changing here in New England, or a heat-rash....maybe it was DH starting off slowly but surely in my body? I treated that by washing with Noxzema and just waiting for it to go away, which it eventually always did.

I cannot for the life of me imagine where I would be repeatedly getting scabies from. The doctor thought that maybe I got it from the martial arts gym/school that I attend, but the second time I got the rash, I was on a long break from attending there. Also, no one else in my house (or anyone else that I know in my whole life for that matter) ever gets it, and one would think that if it was scabies, someone would catch it from me or I would have caught it from someone.

So, now that I am starting out on this gluten-free journey, I am thinking that maybe it was Dermatitis Herpetiformis all along. Below are some pictures from my either first or second flare-up (I can't remember which one it was). The current flare-up (# 3) is on my sides and inside of forearms. What do you think? Also, does it make sense that the rash would seemingly randomly come and go...and when it does come, then take weeks, even months to finally go away? Thank you!!

This is the rash on the inside of a thigh:
Posted Image

This is the rash on the inside of the other thigh:
Posted Image

This is the rash on the back of the legs:
Posted Image
Posted Image
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#2 pricklypear1971

 
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Posted 20 September 2011 - 09:30 AM

I've given up looking at rashes. I just do what works.

Try a low-iodine diet. If you are already gluten free, reducing iodine should show at least some relief in the next few weeks. If that helps, it's a good indicator of DH.
  • 1
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!

#3 eatmeat4good

 
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Posted 20 September 2011 - 09:55 AM

That looks very much like DH to me.
The tiny blisters are consistent.
Some will say they must have a dark purple color, but mine didn't in the beginning of the disease.
They looked like yours.
Later however, they became deeper and darker purple but it took years to get to that stage.
Try eliminating gluten and iodine and see if it helps.
Some Dr.'s don't recognize DH at all.
Mine was diagnosed as acne, fungus, impetigo, and neurotic excoriation.
Going gluten free and limiting iodine is the only thing that heals it.

But as for the appearance of your rash...
Yes, yes, and yes...it looks like DH.

Hope you will post if gluten free and limiting iodine helps you.
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Healing is a matter of time, but it is sometimes also a matter of opportunity.
--Hippocrates

#4 MerrillC1977

 
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Posted 20 September 2011 - 10:59 AM

Thank you. I am already going gluten-free, yes.
But, how do I go iodine free? Where is iodine found in foods?

And, call me crazy, but since I've gone gluten-free, I really do think that the rash acts up again and gets itchier on the day of/day after I eat a little bit of gluten. This third bout of the rash showed up about a week and a half ago (on a day where I consumed more salt than normal, interestingly enough). Two days after that was when we decided to go gluten free. And twice since then, the itch has increased the day of/day after I ate a little bit of gluten (I ate gluten on Friday night, along with salty foods, then the rash was itchier that night and the next day. I ate gluten last night, and again the rash is itcher today).
* I also feel bloated today after having had gluten last night. Hmmmm.

My only other suspicion is that this is related to my nickel allergy -- but the only place on my body that was contacted by nickel was my chest (a necklace), and that was 2 days before the rash showed up.

Assuming it really is DH, does anyone know how long it will be (assuming no more gluten) before this rash clears up?

Thanks, all!
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#5 eatmeat4good

 
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Posted 20 September 2011 - 12:22 PM

You are not crazy.
DH is very..I mean VERY sensitive to gluten and iodine.
You will react withing hours of eating it.
Here is a low iodine diet link.
http://www.thyca.org/rai.htm
Eggs and dairy also make my rash react...probably due to the iodine.
Carageenan is a seaweed and it is present in most milk products.
You will have to see if it bothers you or not.

As for the length of time for DH to heal, it varies... a lot!
Some people heal very quickly in a matter of days. Some take weeks. Some take months and a very unlucky few can take up to 2 years to heal.
I had very active horrible DH for 7 years.
It has taken me one year to heal it all.
But there were a lot of mistakes with gluten and iodine. I mean every few months I would test iodine because I had trouble staying off of eggs and dairy...Giving up gluten was hard enough. Then there was the occasional glutening and with DH being so sensitive to gluten I react for a few weeks after each tiny mistake.

The antibodies can stay in the skin for up to 10 years.
Hopefully you will be one that heals quickly.
It sounds like your body is wanting to heal the rash...and was doing well before your gluten and salt splurge.

It is so obviously reactive to gluten and iodine that you will know for certain in no time at all.
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Healing is a matter of time, but it is sometimes also a matter of opportunity.
--Hippocrates

#6 MerrillC1977

 
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Posted 21 September 2011 - 08:23 AM

Well, I just got back from the dermatologist's office; I saw a Nurse Practitioner. She was really nice and good. I have 4 dissolvable stitches on my side, from 2 little biopsies (one lesion site, and one lesion-adjacent site). Plus blood work. She didn’t balk at the idea of my rash possibly being Dermatitis Herpetiformis like a lot of doctors might, and she even started saying the words before I did). She also didn’t seem to think it was scabies at all like my PCP thought more than once before. She said it could also have been an “Id” response to a nickel sensitivity that I have (I wore a nickel-containing necklace charm a day or two before the rash started up this time). It will be about 10 days before I get test results, and hopefully then I will have something solid to go on.
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#7 pricklypear1971

 
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Posted 21 September 2011 - 08:24 AM

Good for you! Hope your tests come back with something conclusive.
  • 1
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!

#8 Jenniferxgfx

 
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Posted 21 September 2011 - 11:06 AM

You look like me! I also thought I had heat rash in New England summers! It's taken 25 years to figure it out. Iodine really causes flares with my DH. Ive only been gluten-free 3 months, but my skin is so much more comfortable (even if it's not 100% clear), that I'm convinced it's DH. NSAIDs also make my skin angrier.

So much empathy for you. Welcome! This is a great forum.
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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.


#9 Hopeful1950

 
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Posted 21 September 2011 - 12:38 PM

Be sure to post the results of your tests. I can't wait to hear what they show. My rash often looked just like your pix.

We should start a separate thread where anyone who has good pictures of their rash and a definite diagnosis can post the pictures as an example of a definitive case of DH. I'd be curious to see all the different manifestations of the rash.

I'd start it myself except that my crummy camera never could get a good closeup pic of what it looked like.
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#10 MerrillC1977

 
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Posted 21 September 2011 - 12:40 PM

We should start a separate thread where anyone who has good pictures of their rash and a definite diagnosis can post the pictures as an example of a definitive case of DH. I'd be curious to see all the different manifestations of the rash.

I think this is a great idea.
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#11 pricklypear1971

 
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Posted 21 September 2011 - 12:49 PM

I think this is a great idea.


I have some pics bit haven't been officially diagnosed. Derm is waiting for the next big eruption. I can show what happens after 2 weeks on the low iodine diet....
  • 0
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!

#12 love2travel

 
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Posted 21 September 2011 - 12:56 PM

Whoa! That looks like a rash I had about three years ago except mine looked like it was almost stained purple underneath. It was very itchy and burned a lot and appeared on my thighs and behind my knees. I attributed it to the new oil my massage therapist was using but now am wondering if it was DH. I have always had eczema, too.

Could this one-time rash I had ages ago be DH? How often can it occur?
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<p>Confirmed celiac disease February 2011 from biopsies. Strictly gluten free March 18 2011.Diagnosed with fibromyalgia April 13 2011.3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.Osteoarthritis in back and hips.Chronic insomnia mostly due to chronic pain.Aspartame free May 2011.

When our lives are squeezed by pressure and pain, what comes out is what is inside.

#13 pricklypear1971

 
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Posted 21 September 2011 - 12:58 PM

Whoa! That looks like a rash I had about three years ago except mine looked like it was almost stained purple underneath. It was very itchy and burned a lot and appeared on my thighs and behind my knees. I attributed it to the new oil my massage therapist was using but now am wondering if it was DH. I have always had eczema, too.

Could this one-time rash I had ages ago be DH? How often can it occur?



It can randomly come and go. Would make sense yours "goes" since you're gluten-free.
  • 0
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!

#14 MerrillC1977

 
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Posted 21 September 2011 - 12:59 PM

Question -- I went gluten-free 10 days before my skin biopsy and blood work...Gluten-free Sept. 12, testing and biopsy done today Sept. 21. But I *did* eat gluten once or twice during that time (some cake a couple nights ago, a submarine sandwich over this weekend, and maybe one or two bites of other things previus to that). Is this a long enough stretch of gluten-free/gluten-light to affect the blood test or biopsy results in that they might show a false negative? Or should I still have enough gluten/antibodies in my system today for the tests to be accurate?
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#15 love2travel

 
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Posted 21 September 2011 - 01:01 PM

It can randomly come and go. Would make sense yours "goes" since you're gluten-free.

And here I have not been paying attention to the DH board because I thought it was not applicable. I was diagnosed with celiac disease in February and have been extremely dilligently gluten-free ever since. It is so interesting that when diagnosed I thought I was nearly asymptomatic but have since found that is not the case at all.
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<p>Confirmed celiac disease February 2011 from biopsies. Strictly gluten free March 18 2011.Diagnosed with fibromyalgia April 13 2011.3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.Osteoarthritis in back and hips.Chronic insomnia mostly due to chronic pain.Aspartame free May 2011.

When our lives are squeezed by pressure and pain, what comes out is what is inside.




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