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MerrillC1977

Does This Look Like Dermatitis Herpetiformis To You?

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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:

IMG_3788.jpg

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

IMG_3789.jpg

This is the rash on the back of the legs:

IMG_3768.jpg

IMG_3769.jpg

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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.

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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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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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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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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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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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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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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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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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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.

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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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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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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?

I really have no idea about Tge bloodwork. Most people would say it shouldn't but who knows.

The skin biopsy definitely not. The iga is stored in the skin and you had an active rash, which means it was there. There is a high false negative rate for DH dx, it's unknown why - incorrect biopsy technique, reading the sample, or if it is that rare. I'd say if your rash responds to iodine withdrawal when it didn't respond immediately to gluten withdrawal there's a really good chance it's DH even if the biopsy is negative.

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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?

As long as she biopsied an active lesion you should be good. :)

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Well, it's not DH. Nor is it scabies like a past doctor thought. Also, my IgA and IgG blood work also showed normal levels. We are thinking it's my nickel allergy, specifically what's called an "id" reaction. That seems to be the only other thing that fits timeline-wise. We can find out for sure with an allergy testing panel, but for personal scheduling reasons, I can't do that (*if* I choose to at all) until at least November (maybe not even until January). So, for now, I will be getting a nickel content testing kit and going through my jewelry box and removing all culprits....since I knew already I had a nickel allergy, I just never though it could be so severe and it seems to be getting worse each time, so no more nickel for me.

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Wow. Maybe we can understand now why it is so hard to diagnose!

I'm allergic to nickel too. It is terrible. Only real silver and gold for me and you!

Hope your rash is healing. Are you going back to gluten or staying gluten free for other reasons? Just curious.

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Wow. Maybe we can understand now why it is so hard to diagnose!

I'm allergic to nickel too. It is terrible. Only real silver and gold for me and you!

Hope your rash is healing. Are you going back to gluten or staying gluten free for other reasons? Just curious.

Yes, the rash is healing, and I am trying like all heck to put a good timeline together in my head. I know I wore a necklace charm two days before the rash started (and that charm must've contained nickel because it makes my neck itch every time I wear it). It made my neck itch a little, but that was it....then 2 days later, the rash popped up on my sides (this is the "id" reaction where a rash can occur anywhere on your body hours-days, even months after exposure). About two days after that, we decided to go gluten-free, for Hubby's sake (he has Ulcerative Colitis). I *think* that the rash continued to get worse (or at least not start getting better) after that. But I can't remember when it dawned on me that it might be nickel and I removed all my jewelry. I know I wasn't wearing jewelry anymore by the time I went to the dermatologist (less than a week ago) and on that same day I noticed that the rash had definitely started improving. So, looking back, it probably wasn't the removal of gluten that made it turn around, but rather the removal of nickel.

I will be getting a nickel content testing kit and getting rid of all my nickel-containing jewelry right away. I am not taking this chance again, since each time I get this rash, it seems to be getting worse and worse.

We are still waiting for Hubby's celiac panel test results, but have decided to remain gluten-free (or at least 98% so - we will splurge for "real" desserts, pasta or bread once in a great while) because we both feel a lot better eating this way. I think it's truly helping his colitis issues, and so does he. :)

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I also have a nickel allergy and had problems ever since I started wearing earrings. The *real deal* is fine and I can also buy earrings from Simply Whispers, which are guaranteed to not bother nickel-sensitive people.

But I do not have DH.

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Another thing to eliminate in testing ourselves is skin care products that have chemicals in them. I have DH AND I am very sensitive to most company products. There is a great website to check the safety of skin care products: ewg.org/skindeep . You simply put your product name in the box and click and it gives you the rating for the product.

I get a consistent rash on my legs first. Then if it get worse, it starts spreading. I get the little "pimples" full of liquid, too. Interestingly, I can get this with gluten and skin care products. Maybe the skin care products have wheat byproducts in them? Don't know.

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Count me as another nickel sensitive. I wore off the back of a watch and, even though I switched to only silver or gold, had to let my ear piercing close up. No nickel (and very careful for other metals, especially in dentistry, including gold crowns) for this gal.

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We are still waiting for Hubby's celiac panel test results, but have decided to remain gluten-free (or at least 98% so - we will splurge for "real" desserts, pasta or bread once in a great while) because we both feel a lot better eating this way. I think it's truly helping his colitis issues, and so does he. :)

False negatives on biopsies are really common. Your rash does look an awful lot like DH. Since you plan on 'spurging' with gluten now and then that should tell you if it is DH. It may take a couple days after injestion for the rash to occur or it could happen very quickly. So keep a record of when you cheat on the diet and watch for a recurrance of the rash after gluten injestion.

Also with hubby watch for a sharp increase in his colitis issues when you have your splurges. You may find his colitis becomes markedly worse. Again the gluten reactions can be delayed by as much as a week so keep notes.

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False negatives on biopsies are really common. Your rash does look an awful lot like DH. Since you plan on 'spurging' with gluten now and then that should tell you if it is DH. It may take a couple days after injestion for the rash to occur or it could happen very quickly. So keep a record of when you cheat on the diet and watch for a recurrance of the rash after gluten injestion.

Also with hubby watch for a sharp increase in his colitis issues when you have your splurges. You may find his colitis becomes markedly worse. Again the gluten reactions can be delayed by as much as a week so keep notes.

I will keep an eye out, but I am pretty convinced at this point, based on several factors, that it was nickel all along. And we are always checking on his colitis. :)

However, a question -- if it was DH....would the rash resolve itself even though I never stopped eating gluten (I am referring to the first few times I got the rash, lat year and prior, not this time when eliminating gluten was an additional factor)? In other words, if it was DH the first few times, but I never limited my gluten intake back then, would it have made sense for the rash to go away like it did, multiple times, or should I have had it all along, non-stop, until gluten was removed?

Thank you.

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    Thanks Posterboy, that was interesting information.  I believe that I had read something elsewhere about tetracycline, at least, being used instead of, or along with, Dapsone for severe or refractory cases of DH. Unfortunately, even if I had medical insurance (which I do not), and had a regular doctor who was even willing to recognize and accept my condition for what it is, I don't know what kind of luck I would have in persuading that hypothetical doctor to give me a particular and non-sta
    Healthysquirrel,  Please have your doctor check your Vitamin D level!   Vitamin D deficiency is related to vertigo https://www.ncbi.nlm.nih.gov/pubmed/27386060 Vitamin D can help with high IgE https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5263170/ Low vitamin D and low ferritin are tied https://www.ncbi.nlm.nih.gov/pubmed/29385099 Dry eye problems including blepharitis can be helped with vitamin d and vitamin a https://www.ncbi.nlm.nih.gov/pmc/articles
He's still going to have to eat gluten even for an endoscopic biopsy. 2 weeks minimum. Plus guidelines say no dx on an endoscopic biopsy alone - you have to have the positive blood to go with it. Even that 2 weeks will deposit more antibodies under his skin if he's got dh.  Let me put it this way. The gut damage is the gut damage & if he's celiac & it sounds like he is but we don't have labs to prove it, then there is a treatment for it. Only 1 treatment for it. A very strict gluten
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