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What Do You Think?

Ninja

By Ninja
in Dermatitis Herpetiformis

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Ninja Contributor
Ninja
Posted

Hi all

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squirmingitch Veteran
squirmingitch
Posted

YUP! This looks like dh. DH takes many forms/manifestations & what I see in your photos is certainly one of them from what both myself & my hubs have experienced. Further proof for you is the iodine connection & the shower & nightime flare. It all adds up. Including flares with glutening. My deah, you have dh. If you bathe with the coolest water you can handle it will be less irritated. Hot water REALLY gets the stuff going. Read some of the posts on here for things you can use to help with the itching.

JaneWhoLovesRain Enthusiast
JaneWhoLovesRain
Posted

It's hard to tell because it is such a close up but it does appear to be similar to mine. However all medical personnel I've seen are convinced I don't have DH. Your description also sounds like it. Mine would also burn a day or two before breaking out, this is a classic symptom. Also I found showers to be so painful, both from the water hitting me and scrubbing with a washcloth. My skin was so tender. Like squirmingitch said cool water is much more comfortable.

Jane

squirmingitch Veteran
squirmingitch
Posted

Aerial, I meant to address your what you said & I will quote:

"I developed a rash following my first exposure to gluten after having been gluten free for about a month (and since, thereafter)

Di2011 Enthusiast
Di2011
Posted

Many of us also have DH flares when eating to many high salicylate containing foods ("sals" for short).

Baths I could tolerate a bit better warm than having warm shower "hitting" my skin. I used Epsom Salts in the bath - don't know if it helped (certainly didn't hinder) and been used for centuries for skin/stress relief so may be something to it - who knows :)

Ice packs (the soft type) have been my absolute saviour for me and for months it was the only way I could get snatches of sleep. Nothing worse than the nighttime waking to scratching your butt (etc) to bits.

Avoid eating out and eating too much processed foods.

Ninja Contributor
Ninja
Posted
  • Author

Squirmingitch: thank you for the link. I had no idea that DH could present after going gluten-free. It seems like most people go gluten-free because of the rash vs. develop the rash as an effect of accidental exposure after having been gluten-free. Does your rash get irritated by sea salt? I hope it's not 10 years!

MistyRG Apprentice
MistyRG
Posted

Looks like my rash. I can't say mine is positive for DH yet (though dermatologist thinks so), but my biopsy should be back soon.

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squirmingitch Veteran
squirmingitch
Posted

Squirmingitch: thank you for the link. I had no idea that DH could present after going gluten-free. It seems like most people go gluten-free because of the rash vs. develop the rash as an effect of accidental exposure after having been gluten-free. Does your rash get irritated by sea salt? I hope it's not 10 years!

Ninja Contributor
Ninja
Posted
  • Author

Squirmingitch: I had NO idea iodine was in so many things. Now that I think about it, it makes sense given that it is an essential nutrient. :lol: Wow, no wonder! I kind of just figured non-iodized salt and limiting seafood/fish would do it – I guess I was horrendously mistaken! Thank you for the link. So you'd go low iodine for a week or two and then consume it in moderation from then on out (unless you get another flare)?

Yea – I never dreamed I would be posting here. :rolleyes: But gluten-free for years and then developing it? I wonder why that happens.

I didn't know it was called the suicidal itch, lol... but it sure fits! I, also have no idea how they managed. I would say maybe through relaxation techniques or sleep... but I don't think you could relax enough or sleep long enough to avoid the itch. :-/

Naps, too?! (I don't take naps often.) What is it with everything getting in the way of sleep? :( If you sleep under blankets... maybe it's the heat? I've noticed mine is worse now that it is getting warmer and stickier outside.

MistyRG: Thanks! I hope you get some answers and relief. B)

squirmingitch Veteran
squirmingitch
Posted

Aerial, Yes, low iodine for a week or two & then in moderation. We only need 150 mcg per day in the first place --- I wonder JUST how many mcg the ave. person consumes per day?

I am li right now & am about to come off it as my 2 weeks is up. I seem to have a continual running dh (not nearly as bad as it was in the beginning!) & need a break from it once in a while. i think I have a whole lot of antibodies in my skin from years & years & years.

This is an interesting read -- a lot of it technical but you can get the jist --- pay particular attention to the next to last paragraph on the left side of pg. 135 -- it's pretty much in plain english --- in a word; with dh, our guts end up in our skin! Ewwwwwwwwwwwwwww!!!!

Open Original Shared Link

I don't think it's heat from sleeping under blankets although that undoubtedly contributes but I find I still get itchies even when the A/C is set at 77 & I sleep with no sheet or blanket. ??????

Ninja Contributor
Ninja
Posted
  • Author

Oh squirmingitch, I hope your DH continues to improve. It's gotta be awful to have the little buggers pop up when they shouldn't be. :( They really do have a mind of their own, don't they?!

No worries, I'm of the camp: the more technical the better! Looking forward to reading it

squirmingitch Veteran
squirmingitch
Posted

Yes! In fact last night I had the scariest dream that little blisters popped up all over my buns & I was scratching like mad & all upset that it finally covered both my buns.mad.gif What a horrid, horrid dream! I was so happy to come to consciousness & discover it was all a dream! Whew!

Yes, dh has a mind alllll of it's own.

Di2011 Enthusiast
Di2011
Posted

My theory on sleep/resting & DH: When we are awake and busy we still feel the burn, itch etc don't we? But if you are in the middle of a work meeting/sale, your child(ren) is crying out for a bottle, the pile of ironing is only halfway done, the lawn is getting mowed, you need to get the yourself or kids ready for training/sport, you are playing/watching sport etc etc... I don't itch so much because my body/mind are busy. I still itch/burn etc but not nearly so (seemingly) intensely as those rare moments sitting watching a movie (cinemas were off my list for most of the past year due to DH, sitting at home watching TV/movie involved a lot getting up to just 'do something' or otherwise sit/watch/itch). It was one day when I was driving to friends one weekend when I realised that during the weekend when I drove I itched like crazy (a little more relaxed, not in such a rush, not some much on my mind on the weekends). Driving to/from work and sons training etc during the week was still a bit of a 'sedentary' itch but nothing like on weekends.

So at night when we need to be at our most restful for our body to heal (and is there something with DH & prime healing times ??) then we cop it the worst. Our greatest dilemma - nighttime.

Ninja Contributor
Ninja
Posted
  • Author

Hmm... good point! Do you think it 'itches' while we are sleeping and unconscious...? and as we fall into a lighter sleep we can feel it more, which is why we are sometimes woken by the itch? On the other hand, It doesn't seem like it discriminates between REM and the other phases.

ciamarie Rookie
ciamarie
Posted

I'm late to this topic but I thought I'd chime in with a comment. When you mentioned where you're getting the rash, I immediately wondered if perhaps there's some wheat or gluten ingredients in your shampoo? If so, you probably want to get a new shampoo asap. I use Suave, but read the label before you buy! I've also read on here that Dove, Garnier and one or 2 other brands are good about labeling any wheat / gluten ingredients.

Also, I think I'm more sensitive to MSG and sulfites vs iodine and/or Sals, but then I've also discovered that the ingredient used to iodize salt is sulfited, so I avoid iodized salt on that count too. I've been doing o.k. with sea salt, I believe... hope it clears up for you soon!

squirmingitch Veteran
squirmingitch
Posted

Hmm... good point! Do you think it 'itches' while we are sleeping and unconscious...? and as we fall into a lighter sleep we can feel it more, which is why we are sometimes woken by the itch? On the other hand, It doesn't seem like it discriminates between REM and the other phases.

I don't know but when mine is active I always wake up either from a nap or overnight with a few new blisters & bites. The longer sleep (nightime) results in more blisters.

Ninja Contributor
Ninja
Posted
  • Author

ciamarie: Thanks for the reminder! I did switch to dove after the rash on my forehead showed up. Switching definitely helped. There's so much to remember to look for!

Squirmingitch: It is a mystery. However, I do hope it doesn't take 10 yrs for the antibodies to clear out. We need some uninterrupted and peaceful sleep!

  • 2 weeks later...
dani nero Community Regular
dani nero
Posted

looks almost identical to mine!

Ninja Contributor
Ninja
Posted
  • Author

Thanks for responding, Dani - I need to be told (and whacked over the head) over and over that I am not dreaming up this rash! Is yours starting to get better?

Mine has been A LOT better since we banned regular bread (and bread products/crumbly things) from the house & the low-iodine. :) Doesn't make the padre happy though.. at all. :lol:

squirmingitch Veteran
squirmingitch
Posted

Well Dani, if that's what yours looks like then there isn't any doubt in my mind about it. Not that there was anyway with all the other info. I know about you.

dani nero Community Regular
dani nero
Posted

Thanks for responding, Dani - I need to be told (and whacked over the head) over and over that I am not dreaming up this rash! Is yours starting to get better?

Mine has been A LOT better since we banned regular bread (and bread products/crumbly things) from the house & the low-iodine. :) Doesn't make the padre happy though.. at all. :lol:

The only difference between my rash and yours is that mine gets a little more dry and the popped blisters don't get yellow. They used to get bloody when I used to itch them but they don't itch so much anymore.

I'm also sensitive to sals so mine can surface even without the gluten, but to answer your question I would say it is better now because I know how to get rid of it ;-) As I behave and don't get greedy with foods high on sals it goes away.

dani nero Community Regular
dani nero
Posted

Well Dani, if that's what yours looks like then there isn't any doubt in my mind about it. Not that there was anyway with all the other info. I know about you.

I actually have not seen one that looks exactly like mine yet.. which is why I can still get the occasional doubts about it really being DH. I'm a little less doubtful now that we found out my thyroid might be acting out.

I should start a thread where all members can add pics of their rashes for anyone looking for reference actually. I think mine would be looking like the mildest case.

Ninja Contributor
Ninja
Posted
  • Author

The only difference between my rash and yours is that mine gets a little more dry and the popped blisters don't get yellow. They used to get bloody when I used to itch them but they don't itch so much anymore.

I'm also sensitive to sals so mine can surface even without the gluten, but to answer your question I would say it is better now because I know how to get rid of it ;-) As I behave and don't get greedy with foods high on sals it goes away.

I'm glad to hear it's better. :) I think I went slightly insane with the itchiness... and my experience was fairly tame! One thing that I cannot believe is how sensitive it is - amazing. Is yours that way? Have you tried doing the gene test?

Also: have any of your noticed that your DH is aggravated (slightly) by chlorine (like in swimming pools)?

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