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
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.
Thank you for all of the input guys!
Indeed, it really seems like you can't win with DH
There's no reliable way to get a diagnosis, and if you want to try you've got to be eating gluten + you mustn't have used steroids in months!? Everyone's looks different, it comes and goes on its own, and it's one of the itchiest extant skin conditions. Wow.
Even the notion of never eating bread, or drinking beer, or eating pasta... alone... that's about the toughest pill anyone should have to swallow. But then the uncertainty is even worse!
So do you guys think it would prove anything if I went right back to eating gluten again? As in a massive gluten-fest with all the good stuff? Normally, I eat about 2lbs of wheat per day in the form of bread and pasta and cereals. Should going back to that cause a reaction? or must I wait a couple of months to be sure about that as well?
I guess what I'm asking is, where should I go from here?
My rash looks almost exactly like yours. There is no question in my mind that we have the same rash.
I can also identify with the EXTREMELY itchy thing that wakes you up. And the volcano eruption description. Hot water really gets me, and hot steam (like with cooking) the hot water too but not as much. Sweating definitely makes it more pronounced (which I do a lot of in the summer).
I haven't been diagnosed as gluten intolerant or DH or anything. The rash has responded well to oral steroids and sometimes antihistamines.
I've never had any gluten symptoms before this. Definitely no GI problems at all. I've been mostly gluten free for about 10 days, and the rash has not gotten better. However, there have been fewer "eruptions". Besides that though, I don't feel any better... like sometimes people say they feel great when the stop eating gluten. Hasn't done a thing for me.
Interested to talk to you more
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.
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.
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?
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.
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.
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!