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Could My Shingles Have Been Dermatitis Herpetiformis

StephanCasey

By StephanCasey
in Dermatitis Herpetiformis

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StephanCasey Rookie
StephanCasey
Posted

I don't know if I have celiac but I want to get tested. About a year and I half ago (I was only 17), I got a bit sick and then after a few weeks I got these blistery things on the right side of my forehead (my right, your left). I went to a clinic and the nurse looked at it and said it looked like shingles. So I went to a doctor and told him what the nurse said. He said it must be and told me how my immune system must be pretty bad because most people only get shingles when they are older. I was under a bit of exam stress at the time. I've been feeling kind of sick the past few years. It's hard to explain. I was quite chubby as a child and as I got older I just lost weight. Not for any particular reason. I assumed it was because I grew but even though I'm quite skinny my body doesn't feel or look very good. 

 

I also have become pretty pale and I'm not sure if I'm anemic but I think I'm going that way.

 

So I researched stuff about celiac and the dermatitis herpetiformis pictures seemed to match what I had better thing shingles.

 

My "shingles". I had a headache for about a day before the stuff appeared on my forehead. It was a kind of sharp pain and my shingles were a bit itchy. I've heard that they're not as itchy as dh but how itchy is dh. It was itchy to the point that I sometimes felt the urge to scratch it which I admittedly did a little bit once or twice. The one time was after I came out of the shower and it peeled off a bit. Kind of like wet paper. That's the best way I can explain it. It looked a bit purple-ish.

 

I was gone in about a week. I was on meds for shingles but who knows if that even helped it go away?

 

I didn't take any pictures but I wish I did

 

Edit: I also just wanna add that I do still have skin conditions. I have acne which could actually be dh. I also have red bumps (which are often filled with white fluid) on my legs, the back of my arms, my chest and (worst of all) on my back. By worst of all I mean there're lots there..

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squirmingitch Veteran
squirmingitch
Posted

If you want to get tested for celiac disease then you MUST continue eating a full gluten diet until all testing is finished & the results are in just in case they want to retest something.

 

You asked how itchy dh is...... DH is insanely itchy, dh is called the suicidal itch, dh is so itchy you can not get to sleep & it keeps you awake all night long. DH is so itchy that sleeping in poison ivy & rolling in chiggers would be a walk in the park in comparison. DH is a bone deep itch. 

 

The hallmarks of dh are a bilateral presentation, an itch that can not be ignored, it is not a "sometimes itch" or an itch that you "sometimes feel the urge to scratch", water filled blisters or sub epidermal blisters. 

 

If you think you have dh then you have to get a dh biopsy of your skin & it has to be taken from clear skin adjacent to an active lesion & YOU HAVE TO BE ON A FULL GLUTEN DIET OR IT WILL COME UP NEGATIVE. Most people with dh (60%) test negative on the celiac blood panel as well as the endoscopy. 

squirmingitch Veteran
squirmingitch
Posted

Also, read this link:

https://www.celiac.com/forums/topic/108804-to-anyone-looking-to-get-a-dx-of-dh-a-skin-biopsy/

StephanCasey Rookie
StephanCasey
Posted
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It was pretty itchy and all the time while I had it but I think it's hard to say because it was quite a small rash. Not that small. The bumps weren't very small but it only covered a small portion right at the side of my forehead. Also it went away in about a week and I haven't gotten it since but I'm worried that later on in life it will come back worse. I was 17

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