Possible Dh... Would Like Your Input

[Ctrain]

Hello folks,

I've been reading through the forum this afternoon, you have a great community here.

There is a strong possibility that I have DH, and I'm hoping that some of you won't mind sharing your opinions with me.

Three months ago, I developed an intense itching all over the body outside of the neck, face and soles and palms.

Within a few days, I realized that I was reacting to laundry detergent. I had been using one of the "regular" brands, and I had in fact used much more detergent than normal the last time I washed my laundry.

I rinsed all of my clothes and linen many times, and succeeded reducing the irritation.

Concomitantly, I had been seeing a doctor for a bodywork/muscle mobilization treatment, and would continue to do so for the next month.

I started to develop pruritic papules on the fingers, hands, toes and feet. In hindsight, the rash grew each time I did the treatment.

At the time, tree pollen season was in high gear. Symptoms presented soon after exposure to pollen.

Soon enough, my skin was inflamed and out of control.

So basically, I thought I was super sensitive to all kinds of allergens.

But the rash continued on even after pollen season ended, and I started considering DH.

Here's a quick description:

Generally ruddy, inflamed, dry and exquisitely itchy skin. But with pink papules in symmetrical formation on the hands/feet, arms, legs, back, abdomen and axilla. A burning sensation, akin to a volcano erupting, begins about an hour or so before the papules present. After presentation, the papules behave similar to papular urticaria would (a mosquito bite, eg).

Also during this time, I have experienced angiodema (localized swelling common in urticaria), hives (urticaria), contact dermatitis, and strange pruritic bruises (legs only) that come and go within a couple of days. In addition, I'm pretty sure I've got some folliculitis now especially on the legs where the rash has "healed".

I took oral steroids for a six day regimen and all symptoms ceased immediately.

Unfortunately, the disorder reappeared a few days after stopping the oral steroids.

The papules are pink, not red, and contain no fluid. There has never been any weeping. They appear in symmetrical formation and can either appear in great numbers, or individually.

I've been on a (mostly?) gluten free diet over the past 10 days or so, to test the DH. I would say that there has been marked improvement, but by no means has the condition been resolved. If anything, the gluten free diet has really slowed down the flare ups. They still occur, but not with the same severity or magnitude. On the other hand, there has been in increase in the eczema like symptoms since beginning the diet (raw, dry, inflamed, itchy).

I would ordinarily say that this is DH with much certainty, given the improvement I've seen (although I could just be super-sensitive to ALL allergens, including gluten). However, most of the pictures I've seen don't look like what I have. And I've never had this weeping thing, or fluid in the papules. Certainly, I could have a 'nontraditional' form of DH, as it seems to come in many forms.

I've taken some pictures but cannot figure out how to include them in the post.

I'd really appreciate any input you guys have on whether this sounds like DH or not. As you know, this type of thing is a long hard road that really tests you. I've been through some rough times in my life but this itching is a doozy!

[eatmeat4good]

The maddening itch of DH is like no other affliction on earth that I have ever read described in any medical literature. Your description of the itching would be consistent with DH. As for how the rash appears, there are many presentations and mine never looked like the photo's online. However, it all healed after 14 months gluten free. Mine took a really long time to heal, so if you are seeing results already that is great! The rash, as you have read can take many forms and before I got the "weeping" from my rashes, I would have raised bumps that were either flesh colored or hive-like or mosquito-bite-like. Later, I entered the "weeping" and burning stage and it was awful awful awful. It is hard to say what a rash is...that is why it is so hard to diagnose. But the DH rash of Celiac is only healed by gluten free, so that will be your telling point, unless you want to try to get the rash biopsied by a dermatologist. For that you should keep eating gluten. But many dermatologists don't recognize DH or know how to biopsy it. If it is DH, you will have to be really careful about traces of gluten as DH is really sensitive to it and possibly to iodine too. I don't know if this is helpful or not, but I wanted you to know that the rash doesn't always weep and it isn't always the reddish purple. Sometimes it is flesh colored or pink in appearance and the blisters also may be barely noticeable as they break almost as soon as they form.

[Ctrain]

The maddening itch of DH is like no other affliction on earth that I have ever read described in any medical literature. Your description of the itching would be consistent with DH. As for how the rash appears, there are many presentations and mine never looked like the photo's online. However, it all healed after 14 months gluten free. Mine took a really long time to heal, so if you are seeing results already that is great! The rash, as you have read can take many forms and before I got the "weeping" from my rashes, I would have raised bumps that were either flesh colored or hive-like or mosquito-bite-like. Later, I entered the "weeping" and burning stage and it was awful awful awful. It is hard to say what a rash is...that is why it is so hard to diagnose. But the DH rash of Celiac is only healed by gluten free, so that will be your telling point, unless you want to try to get the rash biopsied by a dermatologist. For that you should keep eating gluten. But many dermatologists don't recognize DH or know how to biopsy it. If it is DH, you will have to be really careful about traces of gluten as DH is really sensitive to it and possibly to iodine too. I don't know if this is helpful or not, but I wanted you to know that the rash doesn't always weep and it isn't always the reddish purple. Sometimes it is flesh colored or pink in appearance and the blisters also may be barely noticeable as they break almost as soon as they form.

Thank you for your response!

Now that I am actively researching DH, I understand that it can take many different forms and present very different types of symptoms. I was dismissing DH before precisely because my rash does not fit the traditional stereotypes, and I had not noticed any correlation between flare ups and eating gluten.

It doesn't seem as if I am sensitive to small amounts of gluten (the cross contamination thing, eg). For instance, I have been drinking beer during the gluten free period... more than usual. The beers I prefer are European lagers, and I understand that they are lower in gluten than some. Still, I have not noticed flare ups from drinking the beers.

Regarding blisters "breaking", I have not noticed any blisters break. What do you mean by that? The only blisters I have are formed on the hands and feet, where the skin is tougher and receives more friction. Otherwise, there are no blisters, but rather papules.

Part of me wants to eat a massive pasta repast just to see what would happen.

[squirmingitch]

I couldn't have said it better than eatmeat has. I have had water blisters from the very beginning. Mine have gone down with gluten-free diet to what you & eatmeat describe to the raised flesh colored or pink colored bumps, hive-like, mosquito-bite-like except when they get the scab they will often flare with red raised areas around. I still get some blisters. I am 6.5 months gluten-free. My dh is very sensitive to both iodine and salicylates. I'm still battling but it is much, much better than it was when I was a gluten eater. I also get really, really bad weeping, large dh lesions in my scalp which last for 4 to 6 weeks from presentation until the scab finally can be washed out of my scalp. They are HORRID!!!!!!!!

It is your choice to make as to trying to get a dx. You will have to go back to gluten & I hate to tell you that you that you will almost assuredly flare like you've never seen before as when a celiac goes back on gluten after being off for even a short time the reaction is far worse than before. Once I discovered what I had & went gluten-free & the rash improved giving me my absolute answer there was no way in hell I was going back on gluten to prove to some doctor what I know I have. NO WAY!!!!! I've spent the sleepless nights, I've itched more than words can describe, I've thought about filleting the skin right off my body in order to escape the misery of the rash. In other words, it nearly drove me insane.

We are starting a dh photo bank on this forum. Watch there in the next couple of days. I am adding some photos of myself as well as my husbands. My hubs presents differently than mine. Like you describe.

Here is the link for the dh photo bank:

https://www.celiac.com/forums/topic/94056-dh-photo-bank/

[Ctrain]

I couldn't have said it better than eatmeat has. I have had water blisters from the very beginning. Mine have gone down with gluten-free diet to what you & eatmeat describe to the raised flesh colored or pink colored bumps, hive-like, mosquito-bite-like except when they get the scab they will often flare with red raised areas around. I still get some blisters. I am 6.5 months gluten-free. My dh is very sensitive to both iodine and salicylates. I'm still battling but it is much, much better than it was when I was a gluten eater. I also get really, really bad weeping, large dh lesions in my scalp which last for 4 to 6 weeks from presentation until the scab finally can be washed out of my scalp. They are HORRID!!!!!!!!

It is your choice to make as to trying to get a dx. You will have to go back to gluten & I hate to tell you that you that you will almost assuredly flare like you've never seen before as when a celiac goes back on gluten after being off for even a short time the reaction is far worse than before. Once I discovered what I had & went gluten-free & the rash improved giving me my absolute answer there was no way in hell I was going back on gluten to prove to some doctor what I know I have. NO WAY!!!!! I've spent the sleepless nights, I've itched more than words can describe, I've thought about filleting the skin right off my body in order to escape the misery of the rash. In other words, it nearly drove me insane.

We are starting a dh photo bank on this forum. Watch there in the next couple of days. I am adding some photos of myself as well as my husbands. My hubs presents differently than mine. Like you describe.

Here is the link for the dh photo bank:

https://www.celiac.com/forums/topic/94056-dh-photo-bank/

Thanks for your response Squirming!

I really like your name, because it reminds me of the itches I've gotten these three months where your nervous system makes your body jump involuntarily because the itching is sooooo intense!

Regarding the diagnosis, it really comes down to one thing. If I decide that I definitely have DH, I will go so a Dermatologist and get on Dapsone immediately. I just want to feel normal again.

I don't know how many times I've been within a hair's breath of killing myself. One night, I awoke, and not being myself but rather half asleep, I determined that I was going to end it then and there. And I would have, without question, but a friend texted me in the dark of night, "Don't kill yourself!!!!"... he was responding to a humourous text I'd sent him earlier that day. That synchronicity is the reason I'm still here

Have you guys taken the Dapsone? If not, why not? From what I've read it basically cures DH then and there.

[eatmeat4good]

That is wonderful!

I didn't know about the photo bank but that is a great idea!

My DH is gone...but I could take pictures of the white de-pigmented spots where the sores were. This too, is typical of DH. I do so feel for those still coping with active DH. It plagued me for 8 years. It took 14 months gluten and iodine free to heal it. Squirming...I appreciate your posts and your compliments.

To OP: As for the blisters...sometimes they are teeny tiny. Not noticeable. I would not have said that I had blisters in the beginning, but after several years of bumpy itchy rashes...they became more noticeable and actively weeped..or is it wept? Anyway, don't worry too much about whether the rash weeps or if it is blistery or not. Mine wasn't for years...therefore I did not think I had DH. This was a very sad mistake. By the time I got the answer I was breaking out in weeping lesions on my face. These were nothing like the mild bumpy rash on my legs and arms...but both were indeed DH. Variations can occur in each individual also and vary over time.

The literature would have us believe that DH doesn't occur on the face and it is extremely rare in children and almost never occurs on their face. Both myself and my son had lesions on our face...and I know other poster's here have had it on their face. My son was 9 when the rash came. It appeared to be fungus but did not go away with fungal treatment.

You might have a good idea if you really want to know if it is gluten responsive or not. That big pasta repast would be called a gluten challenge! You get completely clean of gluten and then indulge big! you should learn something from that experiment if you are brave enough to do it!

I was diagnosed backwards...by all the things that healed when I went gluten free.

"Fibromyalgia"

"Migraines"

"Unhealing sores" that did not respond to antibiotics, fungal, acne tx, anti-virals.

No one ever suggested gluten until I found this site.

I am ever grateful for everyone here.

Let us know if you do eat your Gluten Pasta Repast...with Beer!

Some people don't mind self-diagnosing!

It might be kinda fun!

And way cheaper than trying to convince multiple Dr.'s that there is something really terribly wrong with you.

And way easier than getting a derm to agree to test or worse yet, to know how to biopsy correctly!

It's a travesty.

I fully believe in self-diagnosing this monster called DH.

If you don't who will?

Physician....Heal Thyself.

To thine own self be true.

OK my rant is over.

I will be following your progress.

And yours too...Squirming.

[Ctrain]

That is wonderful!

I didn't know about the photo bank but that is a great idea!

My DH is gone...but I could take pictures of the white de-pigmented spots where the sores were. This too, is typical of DH. I do so feel for those still coping with active DH. It plagued me for 8 years. It took 14 months gluten and iodine free to heal it. Squirming...I appreciate your posts and your compliments.

To OP: As for the blisters...sometimes they are teeny tiny. Not noticeable. I would not have said that I had blisters in the beginning, but after several years of bumpy itchy rashes...they became more noticeable and actively weeped..or is it wept? Anyway, don't worry too much about whether the rash weeps or if it is blistery or not. Mine wasn't for years...therefore I did not think I had DH. This was a very sad mistake. By the time I got the answer I was breaking out in weeping lesions on my face. These were nothing like the mild bumpy rash on my legs and arms...but both were indeed DH. Variations can occur in each individual also and vary over time.

The literature would have us believe that DH doesn't occur on the face and it is extremely rare in children and almost never occurs on their face. Both myself and my son had lesions on our face...and I know other poster's here have had it on their face. My son was 9 when the rash came. It appeared to be fungus but did not go away with fungal treatment.

You might have a good idea if you really want to know if it is gluten responsive or not. That big pasta repast would be called a gluten challenge! You get completely clean of gluten and then indulge big! you should learn something from that experiment if you are brave enough to do it!

I was diagnosed backwards...by all the things that healed when I went gluten free.

"Fibromyalgia"

"Migraines"

"Unhealing sores" that did not respond to antibiotics, fungal, acne tx, anti-virals.

No one ever suggested gluten until I found this site.

I am ever grateful for everyone here.

Let us know if you do eat your Gluten Pasta Repast...with Beer!

Some people don't mind self-diagnosing!

It might be kinda fun!

And way cheaper than trying to convince multiple Dr.'s that there is something really terribly wrong with you.

And way easier than getting a derm to agree to test or worse yet, to know how to biopsy correctly!

It's a travesty.

I fully believe in self-diagnosing this monster called DH.

If you don't who will?

Physician....Heal Thyself.

To thine own self be true.

OK my rant is over.

I will be following your progress.

And yours too...Squirming.

Haha, great post!

Well I will certainly post up on the board if I eat the big pasta meal. I've always been a huge bread and pasta aficionado, so I was used to eating a couple pounds of wheat product per day before I began the gluten free diet.

Regarding the doctors and diagnosis, I've found that when it comes to dermatitis and skin conditions in general, they're really just guessing. And that's okay. The skin is an organ, and the only one we can see and feel. It's complex and of course we're not going to fully understand how the skin works (and how it doesn't work, sometimes) at this stage in our evolution.

I'd like to hear if anyone here has taken Dapsone, and how that worked out for them. I'm not too keen on these blood tests I've heard about, but I'm pretty confident in my own health so I don't know that I would care to get them. Is Dapsone prescription only?

[squirmingitch]

To the OP, Dapsone is some serious stuff! And it does not "cure" dh, it makes dh not itch & the lesions, blisters, "bites" what ever you want to call them will not appear but the only thing that cures dh is going gluten free. Think & research before you go the Dapsone route. I will not say I haven't thought of it myself at times but it's a drug I really have no wish to have anything to do with. On top of that it's in the Sulfa class & I'm allergic to Sulfa drugs. there are ppl on this board who have taken Dapsone successfully & just as many who have had terrible effects from it.

BTW, dh is called "The Suicidal Itch". Gee, I wonder why?

Eatmeat, I may just need some help from your extensive knowledge & experience with this beast. I was doing well low sal & had been able to add some iodine above low iodine level & then last week, in a weak moment I ate 4 measly teaspoons of strawberry banana yogurt. That night I woke with my neck itching like the very devil & the rash flaring up. Back to low iodine. Got 2 new blisters yesterday & 1 today. Sigh.

[1desperateladysaved]

If you are drinking beer with gluten, you are not gluten free. If you got completly off gluten, I am pretty sure that in a while you could tell you were reacting to the beer. It is strange, but the reactions seem to get worse as you recover. Oh, I hope you will feel better soon.

[eatmeat4good]

To the OP and Squirming FYI- I got weak and convinced my Dr. to let me try Dapsone. It worked like a miracle the first week! The second week I started to feel spacey and dizzy as the dose went up the third week to 100 mg.... I broke out all over in pinpoint raised red dots rash all over my body and very obvious livedo reticularis which is when the veins on your arms and legs visibly show. It was the scariest thing I have ever been through. I was on 2 weeks of prednisone to recover from that episode. I thoroughly regretted my decision. Having said that, I do know that some have taken it for years with no problem, but that was not the case with me.

Squirming- I do not know if I have the knowledge you need, but I can share what happened to me. I wasn't at all sure it was DH, because my rash clearly reacted to eggs, dairy, and salicylates. I was miserable. As the months wore on I had plenty of theories and no real answers. I later realized that dairy and eggs contain iodine and that salicylates can cause reactions in some people with DH (from googling about DH). So, I gave up dairy, eggs, fruit, any topicals with gluten or salicylates. It was almost as maddening as the DH to be so restrictive. I think there were times I got traces of gluten and did not know it. This can cause weeks of hell for those with DH. Then quite suddenly at 14 months of being gluten free, preservative free (to avoid salicylates and cross-reactive chemicals like benzoates, annatto, yellow food color, and red dyes)and low iodine (no canned goods, no sheelfish, no iodized salt, no processed foods) well, quite suddenly, I healed. Just like that. A few times since the main rash lesions healed, I have had breakouts, but they are drastically less than the weepy lesions I had been dealing with. Now I will get one or two to four tiny pinpoint dots that itch, break open, then take about 2 weeks to heal, and I know I have been cross contaminated. But I cannot always find the source. the best thing I ever did for healing all my Celiac (DH is only one symptom) was to go Paleo. This essentially limited all processed foods and grains thereby minimizing cross contamination possiblities. I limited fruit both for the salicylates and the carbohydrates. I was pretty strict for about 4 months and that completely did the trick for me. I'm not saying it is for everyone. But if I could go back and do it again, I'd go Paleo. Oh yeah, and nuts had to be minimal too. Now, however, I seem to be able to eat whatever I want as long as it isn't gluten. I use salt. I eat dairy. I have only been using dairy and cheese for about 6 weeks but happily I have no reaction at all to yogurt, cheese, ice cream, milk, and real cream in my coffee. Now, then, I do not know if it was the iodine content, or the "leaky gut syndrome" that Celiacs have to deal with. All I know is, I miraculously recovered but it took a damned long time and a lot of patience and perseverance. I even eat salicylates like Mango season is here and I have been eating them every single day with yogurt and no reaction at all.

I hope you have a similar response. All I can say is I thought I would never be able to have dairy or eggs again....but I can. The only thing I can't have is gluten and soy. And I still limit the preservatives just because I do. I also know that trace gluten is a horrifying experience for me. Irrational anger, sores, headaches, weight gain. I think Satan's real name is Gluten. If I can help you in any way let me know. Try plain yogurt with no food color and see if it is any different. I should have kept a diary but I didn't. Just kept eliminating everything that made me sick or caused my sores to hurt and itch. That ended me up with just meat and vegetables, but I felt better than ever in my life! My best to all with DH.

[eatmeat4good]

To OP:

I am sooo sorry.

I was writing so much I missed your comments about being suicidal and my post ended up directly following those comments saying That is wonderful! I apologize for that appearing right after your self-disclosure about wanting to end it all. I meant wonderful that we would be having a picture bank of DH...

So sorry you had to go through that night of hell with suicidal ideation. There have been people who killed themselves during the misery of DH. That too is a travesty. I'm glad your friend intervened....and if nothing else about your descriptions convinces me that yours is DH, it is the fact that you were so miserable that you considered suicide. No other skin condition causes that kind of misery. You might also have been suffering neurological effects of Celaic. (I have gotten suicidally depressed following gluten contamination) Dr. Peter Greene writes about the misery of DH and how it takes some up to 2 years to heal. The antibodies can stay in the skin for up to 10 years. Also how Dr.'s underestimate the misery of the itch and stinging pain of the DH rash. It is only by reading of other's experiences that I came to know what I really had was DH, not neurotic excoriation, fungus, acne or a virus.

As Squirming said, Dapsone is not the answer...though it helps some with the pain. The real answer is gluten free and for those with DH it must be abolutlely strict gluten free as we are the ones most likely to develop the intestinal cancers. There is reasearch on that too. Unfortunately, many with DH do not test positive either by skin biopsy or intestinal biopsy, but nevertheless they have DH. Given the long term consequences of developing other A1 auto-immune diseases or lymphoma or intestinal cancer it is all the more imperative that people know about DH and gluten.

If those depressive episodes return when you have gotten gluten, you should remember that severe and profound depression and anxiety are also consistent with Celiac.

I do hope you never have a night like that again. I got a prescription for Xanax to help me deal with the severe depression that hits following accidental gluten. Thankfully I haven't had to use it in a long time, but it was a real life-saver for me...when there were no friends to text me in the middle of the night.

Written with care and concern.

[eatmeat4good]

Thinking about the depression and sores....It just occurred to me that Job of the Bible might be one of our earliest descriptons of a Celiac with DH....not trying to impose religion...just saying....there's an awful lot of similarities there...hmmm

[squirmingitch]

Thinking about the depression and sores....It just occurred to me that Job of the Bible might be one of our earliest descriptons of a Celiac with DH....not trying to impose religion...just saying....there's an awful lot of similarities there...hmmm

I've had that same thought myself eatmeat. Hmmmmm......

Both of you might find this very interesting too if you haven't already read it. Read the entire thread & be sure to read the links.

https://www.celiac.com/forums/topic/84513-descriptions-of-dh-types/

[Ctrain]

Eat, please don't worry!

Haha, I wrote the line about the suicide as a semi-humorous example! The most interesting people I know contemplate suicide at least once a year!

When I search google, there are some absolutely crazy skin conditions on there. I'm sure that there are many skin conditions that are just as bad, or much worse, then DH. Just the same, if this is how I must live the rest of my life, than it's not much worth living. I'm certainly not scared of cancer or any other complications, what will be, will be.

At this point, I would do the Dapsone without hesitation (if this is indeed DH). I didn't get any side effects from oral steroids and I generally minimise medicines. However, with this skin condition I've been like a kid in a candy store when shopping for drugs.

[Ctrain]

Eat,

I just wanted to add another thing. I don't have depression or anything like that. Believe me, I know what clinical depression is and I do not have it right now.

In fact, I don't have any symptoms of celiac besides the possible DH.

[eatmeat4good]

Well that is a relief!

Thank you for letting me know you aren't depressed!

I agree that some of the most interesting and intelligent people consider suicide at least once a year!

If you try the Dapsone....let us know how you do.

That might be another way to get diagnosed. If it stops the pain and itch...that is....then it must be DH right??

[eatmeat4good]

I've had that same thought myself eatmeat. Hmmmmm......

Both of you might find this very interesting too if you haven't already read it. Read the entire thread & be sure to read the links.

https://www.celiac.com/forums/topic/84513-descriptions-of-dh-types/

That is a very interesting page of DH descriptions.

I wish I had happened upon that long ago.

I would have been diagnosed sooner.

And by a Dr. from 1916 no less.

Amazing!

Thank you for sharing that.

[squirmingitch]

Puts a whole new light on things doesn't it? And I have since found several references to that work in med publications since year 2000 & they quote from the original 1916 paper. Now WHY don't doctors see those & USE them??????

[Ctrain]

Puts a whole new light on things doesn't it? And I have since found several references to that work in med publications since year 2000 & they quote from the original 1916 paper. Now WHY don't doctors see those & USE them??????

Hey guys.

I thought I would update this to say that I just ate a huge pasta dinner... I'll let you know what happens!

I'm pretty certain at this point that at most, gluten may be contributing to very severe eczema, and that I am not likely gluten intolerant. Wheat is a known cause of eczema in people who are not generally sensitive to gluten.

[squirmingitch]

Here's hoping for the best for you Ctrain!

If you think you have eczema then you might find this very interesting:

https://www.celiac.com/forums/topic/94545-exzema/

[Ctrain]

Here's hoping for the best for you Ctrain!

If you think you have eczema then you might find this very interesting:

https://www.celiac.com/forums/topic/94545-exzema/

Thank you!

Well, it's over 12 hours since my pasta meal, and no symptoms whatsoever! I'm so happy!

Thanks for your help guys

[squirmingitch]

YVW! This may sound odd but am very glad you won't be joining us.

Live happy & prosper friend.

[Ctrain]

YVW! This may sound odd but am very glad you won't be joining us.

Live happy & prosper friend.

Haha

Thank you for your help Squirming! I'm glad I won't be joining you guys as well. I can indeed empathize, however, with the condition as it's awfully similar to what I've had... except that I tend to flare up from different triggers

[squirmingitch]

But now you have learned a lot about celiac disease, dh & gluten intolerance. That knowledge may one day come in quite handy when you will be able to help someone out who does have these things or even if they are someone like you who is wondering & trying to figure it all out.