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Is this DH? All labs negative

Casy

By Casy
in Dermatitis Herpetiformis

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Casy Contributor
Casy
Posted

Hi folks! I was on one of the other boards, but since my primary indicator these days is a rash, I figured I'd head over here. I'm glad I did... I was under the impression that I could maybe ignore these issues since I'm in "remission" but I'm starting to think that's not a great idea. I have had a large number of celiac-related symptoms in the past, but since going off of milk, all I see are the skin rashes on my elbows and in my hairline, plus my hair sheds more than normal. The rashes come and go, sometimes 6 or more months apart. All my blood tests came up negative, and yes I was eating gluten. Now if I drink milk, my constipation comes back as well as mucousy poo. (TMI, I know), but all the malabsorbtion-related stuff if fine now. I also do turmeric and B-12 every day with a good multi-vit. Maybe this isn't gluten related but something else I'm reacting to? There's no rhyme or reason to when a rash breaks out. These pictures are a month apart from a pretty minor breakout. The little spots are filled with clear fluid, and they itch.

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20170511_215313.webp&key=b98c7115d682687e

20170512_161859%25202.webp&key=66e62031aa

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cyclinglady Grand Master
cyclinglady
Posted

Have you looked into these autoimmune rashes?  

https://rarediseases.org/rare-diseases/autoimmune-blistering-diseases/

Really, skin biopsies are needed to diagnose DH, if you have failed the celiac blood panel.  You can not judge by visually looking at it.  Note that some folks with DH are seronegative.  

Casy Contributor
Casy
Posted
  • Author

My rash is now clear, save for a few small scabs, so I have to wait for it to come back again and try to get in for a skin biopsy. My doc said we'd do the biopsy the next time the rash cropped up if the labs didn't show anything. Some people's DH looks very different than mine though (of course, I'd been scratching and it burst the blisters).

I have taken a look at other auto-immune blistering rashes, but none of them seem to match mine. I only get the itchy rash on my elbows and scalp, once or twice I've had a couple blisters on my knees.

Victoria1234 Experienced
Victoria1234
Posted
1 hour ago, Casy said:

My rash is now clear, save for a few small scabs, so I have to wait for it to come back again and try to get in for a skin biopsy. My doc said we'd do the biopsy the next time the rash cropped up if the labs didn't show anything. Some people's DH looks very different than mine though (of course, I'd been scratching and it burst the blisters).

I have taken a look at other auto-immune blistering rashes, but none of them seem to match mine. I only get the itchy rash on my elbows and scalp, once or twice I've had a couple blisters on my knees.

My dh looked a lot like yours. It could have been me you took photos of. I got it on my elbows and scratched like crazy too. My biopsy showed dh. My dh didn't go away until I went gluten-free cf for a few months, then for a couple years, the itch, not the rash, was the first sign I had glutened myself. Now I don't even get an itch (I've been gluten-free since 2008).

Casy Contributor
Casy
Posted
  • Author

I see so many different DH rashes! Thanks for confirming it may fit the profile. I'm thinking a biopsy is in my future... hopefully I can catch a dermatologist when I have an outbreak. 

squirmingitch Veteran
squirmingitch
Posted

If you have an outbreak & have it biopsied for dh, it will turn up negative. Sorry. Just like for the blood tests & the endoscopy, you MUST have been eating gluten. So you would have to do a gluten challenge.

Laoshi Rookie
Laoshi
Posted

I went off gluten, and the dh didn't go away but got gradually worse.  Then I went off dairy completely and the dh cleared right up.  It hasn't come back, and I've heard that dairy is not much different from gluten on the molecular level, so the immune system is just being overly protective I guess.  After a year I re-introduced dairy gradually and the dh didn't come back, but other symptoms did. Go figure. So now I'm off dairy again. Aargh.

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Casy Contributor
Casy
Posted
  • Author
2 hours ago, squirmingitch said:

If you have an outbreak & have it biopsied for dh, it will turn up negative. Sorry. Just like for the blood tests & the endoscopy, you MUST have been eating gluten. So you would have to do a gluten challenge.

I have never stopped eating gluten, like, not ever.

Casy Contributor
Casy
Posted
  • Author
30 minutes ago, Laoshi said:

I went off gluten, and the dh didn't go away but got gradually worse.  Then I went off dairy completely and the dh cleared right up.  It hasn't come back, and I've heard that dairy is not much different from gluten on the molecular level, so the immune system is just being overly protective I guess.  After a year I re-introduced dairy gradually and the dh didn't come back, but other symptoms did. Go figure. So now I'm off dairy again. Aargh.

You know, the thing I have been really wondering is if people can have celiac-like reactions to casein alone.  I haven't ever come across any reading that suggests that could be a possibility though. Everything I have read regarding casein is that yes, it can make celiac symptoms worse, or if it's an allergy, there will be typical allergy reactions (ie, vomiting, nausea).

squirmingitch Veteran
squirmingitch
Posted
4 hours ago, Casy said:

I have never stopped eating gluten, like, not ever.

Okay then, you're good to go for a biopsy. Sorry I misunderstood & thought you were off gluten now. Make sure the biopsy is taken correctly from clear skin adjacent to an active lesion. Warning ~~~~ scratching easily destroys the patterning the pathology will be looking for.

60% of us with dh test negative on the blood work so a dh biopsy is the best way to go.

  • 2 years later...
Meggan Newbie
Meggan
Posted
On 6/4/2017 at 1:45 PM, squirmingitch said:

Okay then, you're good to go for a biopsy. Sorry I misunderstood & thought you were off gluten now. Make sure the biopsy is taken correctly from clear skin adjacent to an active lesion. Warning ~~~~ scratching easily destroys the patterning the pathology will be looking for.

60% of us with dh test negative on the blood work so a dh biopsy is the best way to go.

Wait if you have cut out gluten you could get a negative from biopsy? I thought the antibodies were there under the skin regardless?

I had been gluten-free for a couple weeks but with probably one f$#% up a week, I call it the learning curve. So not fully gluten-free before the biopsy. But I didnt realize that could give you a negative because the rash wash still so itchy and moving all over. Not as mental as before though.

 

 

 

 

squirmingitch Veteran
squirmingitch
Posted
On 11/26/2019 at 10:40 PM, Meggan said:

Wait if you have cut out gluten you could get a negative from biopsy? I thought the antibodies were there under the skin regardless?

I had been gluten-free for a couple weeks but with probably one f$#% up a week, I call it the learning curve. So not fully gluten-free before the biopsy. But I didnt realize that could give you a negative because the rash wash still so itchy and moving all over. Not as mental as before though.

 

 

 

 

I know, it's a mind&%$&. Yes, the antibodies do linger there under the skin but not in a manner that shows in the pathology of the skin biopsy. The rules for a dh skin biopsy are the same as for celiac serum panel or endoscopic biopsy -- you MUST continue eating gluten every day until the day of the biopsy or blood draw.

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