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I Think I'm Having A Dh Outbreak But Not Sure

kayo

By kayo
in Dermatitis Herpetiformis

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kayo Explorer
kayo
Posted

All my life I have been itchy. I've had shingles, chicken pox, hives, KP (self diagnosed) and exczema (self diagnosed). I always seem to have what I think are bug bites, even in the middle of winter.

I firmly believe that one or more of my shingle outbreaks was DH as it was right in the crack of my bottom. I had gone to the doc who said he wasn't sure it was shingles as he had never seen it there but didn't know what else it was so he said it was shingles. That was a good 15+ years ago. He wasn't a dermatologist.

Recently had an endoscopy. The doc was not looking specifically for celiac but was adding that to her check list. Results came back negative. It's also important to note that I've been gluten free for 15 months at this point. Previous blood work also came back negative for celiac. My Enterolab stool test shows positive for gluten intolerance. For me the proof is in the diet so I stick to it.

However, yesterday feeling a bit brave thinking, ok, it's not celiac so a minor cheat won't hurt now and then. In 15 months this is only my second deliberate cheat. I had a crispy spring roll.

This morning I noticed my palm was crazy itchy. Crazy itchy. I scratched and scratched and noticed a tiny bump form. It was red. I went about getting ready for work and tried to ignore it. I got in the car (in the sunlight) and looked at my palm. There was a tiny blister. It was skin colored and filled with a liquid that was just slightly yellow but clear. I really had to look close, it was so small. I tried to squeeze it (yes, gross, sorry) and it didn't yield. It was still itchy. I was able to break it with my fingernail. It itches less but there's a red spot there, almost indistinguishable. I took a picture. The quality isn't great as I took it from my phone.

gcp8g.webp

What I'm wondering is, can a single small postule qualify as a DH rash? Can an outbreak be that small and specific? Then later at work my knee started to itch like crazy. I scratched and the area was red. Another small bump formed but since the skin on my knees are darker it was hard to see if this was also a tiny blister. I'm also having a bit of D today.

I just read about the iodine test. I'll do that tonight. Would that be soon enough? Or too late?

I don't have a dermatologist so I'd never get in to see one in time to have a test taken.

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cassP Contributor
cassP
Posted

i dont think its too late... i did the iodine test- but you're supposed to leave it on for 24 hours... i could only handle 45 minutes- the iodine was burning my skin off :o

so, i didnt know if it would work- but i did get a few more blisters.

?? it is hard to tell when there's only one?? its easier to identify if its in a cluster... maybe the iodine will give u answers

rdunbar Explorer
rdunbar
Posted

Hi! DH is always symetrical on your body, ie. you would have it on both hands.

DH appears in clusters of blisters. of course, i'm not sure whats going on from a picture. Also, DH isn't just itchy, its INSANELY itchy and painful to the point of being torture. If it is DH , you would know exactly what i'm talking about in terms of the burning pain, and how you cant stop scratching it. Hope this helps.

RiceGuy Collaborator
RiceGuy
Posted

Although DH is often symmetrical, it is not 100%. Anyway, it doesn't have to be DH to be a reaction to the gluten you ingested. If you haven't been having such reactions lately, it sure would seem related IMO.

From what I've read, DH appears as a red spot (or cluster thereof), usually with a tiny "peak" in the center of each/most of them. But from various postings on this board, it does seem to vary somewhat.

Marz Enthusiast
Marz
Posted

I sometimes get watery blisters like that - just one or two in an area, sometimes itchy, sometimes not, but always in response to getting some accidental gluten.

I think the insane itch is the common ground with everyone, the worst is when it hits at night and you can't sleep for the *itch*!

I don't get the widespread rash, I just get bumps like that in isolation, sometimes it looks more like a pimple (white-head, red circle around it) but it doesn't burst when you squeeze it, in fact squeezing will make it worse. I just leave them to heal by themselves and try not to scratch. I always get the insane itch first, then I have a look and notice the bump.

Definitely not classic DH, but certainly gluten-related :)

Hope that helps!

lovegrov Collaborator
lovegrov
Posted

DH was not always symmetrical with me -- and I had it for more than 20 years, so I knew when I had it.

richard

rosetapper23 Explorer
rosetapper23
Posted

Yes, the idea that DH is always symmetrical is simply a fictional "fact" in medical journals--personally, I don't think enough research has been done or data collected for the medical community to know one darned thing about DH. While my DH is symmetrical on my face, both my son and I get DH on one hand and on the sole of the foot on the opposite side. Funny--I get it on my left hand and right sole, and my son gets it on his right hand and his left sole. LOL! However, after an accidental glutening, I've sometimes found a stray DH blister in the oddest of places.

My experience has also been that, while I'm 100% gluten free, because my thyroid failed three years ago and I've had to take Armour Thyroid (which contains iodine), I get an itchy rash between my nether cheeks and across my upper back and neck. I'm able to control it with Clobetasol, but it appears that I will have it for the rest of my life, since I'll always need meds that contain iodine. I believe that people with DH may also be "allergic" to iodine. If I eat a food with too much iodine, I suffer an asthma attack, and if iodine touches my skin, it feels as though that part of my body has been beaten with a bat.

So...yes, you may have DH as well as an allergy to iodine. Check your dairy--most dairy has iodine, but I've found that organic dairy generally doesn't.

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cassP Contributor
cassP
Posted

Rose- how do u feel on the Armour??? i just got dx last month, am on Synthroid 50mcg... but sometimes i feel worse, and more out of breath than before... im so worried that im going to also need a T3 med- and that my doc wont be open to that.

were u ever on a T4 only med?? and do u find the Armour is suiting u much better?

takeiteasy Rookie
takeiteasy
Posted

I sometimes get watery blisters like that - just one or two in an area, sometimes itchy, sometimes not, but always in response to getting some accidental gluten.

I think the insane itch is the common ground with everyone, the worst is when it hits at night and you can't sleep for the *itch*!

I don't get the widespread rash, I just get bumps like that in isolation, sometimes it looks more like a pimple (white-head, red circle around it) but it doesn't burst when you squeeze it, in fact squeezing will make it worse. I just leave them to heal by themselves and try not to scratch. I always get the insane itch first, then I have a look and notice the bump.

Definitely not classic DH, but certainly gluten-related :)

Hope that helps!

When you can't sleep, take a bath with some baking soda or wash the area itching with baking soda & water. I fall asleep immediately after doing this. It's a wonderful solution I read on another site (forgot which).

kayo Explorer
kayo
Posted
  • Author

Thanks for the replies. I ended up with three more blisters. One on my left knee and two on my right ankle. I didn't do the iodine test long enough. There was discomfort at first and then nothing. It appeared like the iodine just soaked in and disappeared. The 3 blister locations seem to alternate in driving me crazy! One of them is always itchy but never more than one at a time. Also, heat seems to activate them.

Do they generally appear on or near the joints?

quincy1775 Newbie
quincy1775
Posted

Rose- how do u feel on the Armour??? i just got dx last month, am on Synthroid 50mcg... but sometimes i feel worse, and more out of breath than before... im so worried that im going to also need a T3 med- and that my doc wont be open to that.

were u ever on a T4 only med?? and do u find the Armour is suiting u much better?

My wife was on Armour until the supply problems caused it to not be available in our area. She then switched to having a custom-made compound, but then that was discontinued too. Now she's on a combination of Synthroid and Cytomel so she gets the T3 and T4, and she has done very well on that combination.

Before she was put on Armour, she was on Synthroid only and she did not respond well. She needed both thyroid hormones, and she got that with the natural dessicated thyroid meds, but not Synthroid by itself. So when Armour was no longer available, she got very worried...but thankfully she was prescribed Cytomel with it.

cassP Contributor
cassP
Posted

quincy- thanku so much!! That info helps ALOT!!!:)

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