Dermatitis Herpetiformis Question

[Deaminated Marcus]

I'm on a gluten challenge till I get seen by a gastroenterologist.

 

Sometimes my buttocks gets very very itchy and pimply in the evening.

Then it's normal again the next day.

 

Is this how Dermatitis Herpetiformis behaves in the beginning stage?

 

Or is it full on - all the time?

 

[squirmingitch]

That's not how mine behaved. I also wouldn't say dh is full on all the time ---- not in the very beginning anyway.

[Deaminated Marcus]

Thank you for replying squirmingitch.

 

Can the biopsy be taken only during the rash or can it also be taken when it clears?

[squirmingitch]

The biopsy really can only be taken during the rash b/c the biopsy HAS to be taken from CLEAR skin ADJACENT TO an active lesion. Read some of the posts on here in the dh forum. It will give you links to the proper way to take a dh biopsy AND PERHAPS MORE IMPORTANTLY how many derms screw it up even though they act like they know what they're doing! YOU need to be your own advocate & look over their shoulder & make sure they get it right or else you'll be frustrated & wondering perhaps forever. You don't want that! You have to be firm & print out how to take a dh biopsy the proper way & TAKE IT WITH YOU & SHOW IT TO THEM. Once in a while you come across a derm who knows what they're doing but the odds are against you okay? So take care of yourself by making sure it's done correctly the first time around.

 

AND I CAN'T STRESS THE FOLLOWING ENOUGH! 

DO NOT stop eating gluten until the biopsy results are back. DO NOT eat gluten light until the biopsy results are back. DO NOT think you can go gluten-free & then eat some crackers a couple days before hand --- it will not work. And all of this applies until ALL testing is complete & results are in & you KNOW that everyone did everything right if you are going to have a celiac blood panel &/or endoscopy. And I will repeat what I've told a 1,000 times ---- celiacs with dh test neg. on blood & endoscopy more often than not. The antibodies are in our skin & that's what causes the high rate of false negatives on those tests.

 

AND topical steroid use or oral steroid use within roughly 2 months prior to dh biopsy will yield a false neg. biopsy. And I don't care WHAT the doctor says contrary to that.

 

Good luck & we sincerely hope you do not have celiac disease & especially dh!

But if you do --- we're here! Okay?

[Deaminated Marcus]

Thank you for the detailed answer squirmingitch.

 

I'm still eating the bread daily, about 6 slices and I'm feeling the fibro pain.

 

I did the Celiac panel and it came back negative, (I was gluten free for 2 years).

But when I read Celiac books in Dec 2010, I saw my childhood and teens medical problems in the chapters.

 

The rash is so intermittent that it's going to be pretty hard to see a doctor about it.

 

Yes, that is the most frustrating thing... having to educate our doctors (FOR FREE).

 

Thank you for the taking the time to answer.

[squirmingitch]

Oh you're most welcome Marcus!

Yes, you're right. And you had been gluten-free for 2 years so that didn't help your blood panel. IMHO you would need a super long gluten challenge to overcome the 2 years PLUS the (if you have dh) dh factor making it negative. And still you could turn up neg. on the blood. The problem is, if you have dh then you're probably going to have to wait & continue with eating gluten until the rash goes bonkers. And the rash can go bonkers all at once. Then you're in BIG trouble. My rash were here & there & here & there for years & then one day it went ever loving NUTS. Now remember that dh deposits the antibodies under the skin. Once they've been deposited you have to suffer for could be 2 years or even longer. You might be able to take Dapsone but that's not guaranteed --- plenty have not been able to tolerate Dapsone so you can't count on Dapsone being your answer.

All this is sort of a long way of saying ----- if gluten is hurting you then do you really need an "official dx"? You don't need anyone's permission to go gluten-free. You know that -- you went gluten-free before for 2 years. So unless there is some other valid reason that you must have that official dx then why not just save yourself some grief & go gluten-free now & never look back?

I can tell you that full blown dh is a BAAAAD MUTHA & I would tell anyone that if they can avoid it getting to that full blown point then do so without hesitation! Take a look in the dh photo bank at my photos & some of the others who have it really bad. You don't EVEN want to go there. If I could save just one person from experiencing the hell I've been through then I would dance with joy! There's a reason dh is called the suicidal itch & I know why.    

[GFinDC]

Hi Marcus,

 

There is a member GfreeMo who developed DH after going back on gluten for 2 years.  She has been having a hard time with it.  It's not a fun condition.  People with DH sometimes avoid iodine when they are flaring.  And flares can last a while.  Listen to Squirmy, she knows what she is talking about.

[squirmingitch]

Thanks GFin DC.

Yes, GFreeMO is having a rough time of it --- a really rough time.

[Deaminated Marcus]

Thank you squirmingitch and GFinDC,

 

I'm sorry to hear of all the suffering from the full blow HD rash.

 

I'm itching this morning but I can't see well back there even with a mirror.

 

Can my PCP take a sample next to the tiny spot or is it only a dermatologist that can do it?

 

Does he put the sample in a sterile pee container or does it have to be put in a special solution?

 

Do I have to have a full blown wide area rash or can he take a sample next to just one itchy red spot?

 

How big should the skin sample be? 1/8 of an inch ok?

 

I failed the blood test so this might be my only chance to get diagnosed.

[squirmingitch]

I seriously doubt your PCP would take a biopsy. 

Here are some links:

Open Original Shared Link

 

Open Original Shared Link

 

Open Original Shared Link

 

Open Original Shared Link

[squirmingitch]

I was short on time earlier but here are some more links for you. You should read them all - all the way through.

https://www.celiac.com/forums/topic/98712-dermatitis-herpetiformis-and-other-rashes/

 

https://www.celiac.com/forums/topic/95643-interesting-reading-on-dh/

 

https://www.celiac.com/forums/topic/91453-having-skin-biopsy-monday/

 

https://www.celiac.com/articles/21519/1/Specific-Gene-Tied-to-Dermatitis-Herpetiformis/Page1.html

 

Open Original Shared Link

 

Open Original Shared Link

[Deaminated Marcus]

Thank you for the links. I read the first batch.

I read how deep they have to cut so that means it has to be a dermatologist.

It's not easy to see one where I live.

[kmag]

Squirmingitch is totally on the money here.  If I were you, I'd give up the gluten this minute and never look back.  Forget about a diagnosis and just run from the gluten.  RUN, my friend!  My sister just told me that she's starting to get a rash on her behind and with our family history of celiac and DH I was kind of surprised she hadn't already quit eating gluten.  I mean, she's SEEN my skin and that should be enough to scare most people off gluten.

 

It's taken 26 months gluten-free so far to start seeing and believing that my skin is finally healing.  Lots of flares still, but iodine is a big factor in that..

 

Good luck to you in whatever you decide to do.

[pricklypear1971]

My Dad has a mysterious rash - had it for decades.

You think he's stopped gluten since I figured out where my rash came from?

Ut uh. He isn't in enough pain and may never be.

[Deaminated Marcus]

I saw my PCP. 

The itchy buttock rash was gone when I saw him.

He thinks the rash would last longer if was Dermatitis Herpetiformis and not come and go so fast.

[pricklypear1971]

I saw my PCP.

The itchy buttock rash was gone when I saw him.

He thinks the rash would last longer if was Dermatitis Herpetiformis and not come and go so fast.

Completely untrue, in my experience, at the beginning.

Beware - when it decides to stay, it's hellish.

That said, it wouldn't disappear daily. It would stay a week or two, vanish. Then 6 months, vanish. Then, it didn't go away....

[squirmingitch]

Ditto what Prickly said.

[Deaminated Marcus]

Thank you pricklypear and squirmingitch,

 

Yes I scratched it in the evening  and then it's gone the next day for a for a week or longer.

[pricklypear1971]

Thank you pricklypear and squirmingitch,

Yes I scratched it in the evening and then it's gone the next day for a for a week or longer.

You know, it doesn't have to be DH to be a gluten related rash?

There are hundreds of gluten reactions - this may be yours. It just may not be DH.

[squirmingitch]

Well said Prickly. 

It can be soooooo hard to get a dx of celiac disease --- you know that Marcus, you've been reading on here long enough to know that. It is 10x harder to get a dx by way of dh. And if you don't get a dx of dh then they aren't going to dx you based on any other rash.

I'm going to say this one more time & then I will not harp on it again Marcus. You went gluten-free before for 2 years & you were so much better off. If gluten hurts you then don't eat it. Period.

Now, I will not say that again & I will support whatever decision you make & try to help in any way I can.

You could be non celiac gluten intolerant. Still means to stay away from gluten. Research into NCGI is in the infant stages --- who knows what they will find out in the future as far as that goes.

[Celiac Mindwarp]

Hi Marcus

I don't have DH, but following negative blood tests, biopsy and genetic test I have been declared NCGI. I have been strictly gluten-free since September 12, and clean wholefoods, paleoish,dairy free since. January 13. I have just got better and better, with a host of symptoms clearing, including eczema and random rashes. My skin is much softer too.

Just sayin

[sisterlynr]

Thank you pricklypear and squirmingitch,

 

Yes I scratched it in the evening  and then it's gone the next day for a for a week or longer.

 

 

Hmmmm, from my personal experience, I've not had anypart of this rash disappear overnight!  Maybe you have a gluten allergy, not DH?  

 

Btw, were you considering doing a biopsy on yourself?  I really don't think that would be a good thing to do.  You were asking about how deep the biopsy needed to be, how large and what type of container to use.  

 

I'm concur with the other ladies . . . eat gluten free and if the rash goes away, don't worry about a biopsy.   Hope all works out for you.