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Dh Biopsy - Making Sure It's Done Correctly...

appletree729

By appletree729
in Dermatitis Herpetiformis

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appletree729 Apprentice
appletree729
Posted

So when you go in to get a skin biopsy, what should you tell the doctor?  "please make sure to take the biopsy 'next to' the lesion and not on top of it?  How do you know that it is done correctly?  Are there any guidelines that you all can share with me?

 

My husband gets this rash that comes and goes - he's been getting it for years and even before I knew about dh, I was convinced he had celiac;)  His aunt was recently biopsy-diagnosed celiac and he has had some testing done - he's DQ2 + but had negative bloodwork (and even a negative biopsy but he'd been gluten free for quite some time before the biopsy and had only recently re-introduced gluten!)

 

Anyway - I *think* I've convinced him to go get a biopsy while he has the rash now.  He was brainstorming about what could have caused it - kept mentioning how he thought maybe he was becoming allergic to seafood because he had seafood the night before it appeared and he seems to remember similar things happening in the past after eating seafood (but not every time).  

 

I've read here that iodine can make rash symptoms worse - so I'm wondering if this could be the possible connection to the seafood?  He also said that he gets it often on vacation and always thought it might be a reaction to sunscreen, so maybe it's not dh.  I don't know.  Unless sunscreen has iodine too?  Or maybe he's eating more seafood on vacation!  ;)

 

Anyway - so I'm just looking for some advice on what to do with the doctor.  Exactly what to say (or research beforehand) to make sure the biopsy is done correctly.

 

And also if you could let me know if you think this sounds like dh.  My hubs has all sorts of horrible GI symptoms, weight loss, has been told it's IBS...  definitely reacts to gluten and feels much better when gluten free.  The rash is not really the fluid-filled bumps that I've read about though - more like widespread small pimples but very itchy.  On his abdomen/chest mostly.  I'm not sure if it's on his elbows/knees or anywhere else (he's not here right now or else I would examine him!)

 

Any tips would be greatly appreciated!  Thanks:)

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squirmingitch Veteran
squirmingitch
Posted

Open Original Shared Link  forget what they say about it's location on the body --- that's bunk --- we who have it can tell you it appears anywhere it darn well pleases & while it does appear where they say that's not the ONLY places it appears & not necessarily the first or most frequent places. You might want to print a copy & take it to the derm.

 

Open Original Shared Link

 

Open Original Shared Link

 

Open Original Shared Link

 

Open Original Shared Link

 

Open Original Shared Link

 

Open Original Shared Link

 

Open Original Shared Link

 

Open Original Shared Link

 

And the rash does not ALWAYS present as water filled blisters --- that happens when you've got it BAD. You might want to print his out too (the pages from the book)

https://www.celiac.com/forums/topic/84513-descriptions-of-dh-types/

 

Celiacs with dh test neg on the celiac blood work 60% of the time so testing neg on th eblood is not a good indicator that he doesn't have celiac disease. As far as the endoscopic biopsy --- if you lay the small intestine flat out it would cover a tennis court ---- there's a LOT of territory there. A minimum of 6 to 8 biopsies should be taken b/c of that fact.

 

Your thinking is right about iodine & also about the possibility that when your hubs vacations he breaks out b/c he's eating lots of seafood ie: iodine. I will also mention that it seems heat makes the rash go nuts so being by the sea, in the sun can play a part. And then there is the possibility he's allergic to sunscreen --- long before I discovered I had celiac; I could not use sunscreen --- I broke out in little itchy bumps (was it dh? --- or allergy to sunscreen? who knows?).

 

IBS is a cop out dx! IBS is a symptom NOT a diagnosis!!!! Ask on this board how many celiacs were dx'd with IBS prior to discovering they had celiac & you will get almost a 100% return in the affirmative. :angry:

 

With your husbands GI symptoms, his aunt, the weight loss, & his reaction to gluten it sure sounds like he is celiac. And if he's celiac then he certainly can have dh.

 

I hope you have a super good derm b/c most of them get it all wrong. :(  :angry:  <_<

 

BTW, how long has he been eating gluten this time? And is he eating a "normal" gluten diet & not a "light" gluten diet?

 

We're here for any other questions. And let us know how things turn out. And one last thing...... if all testing turns out negative.... if your hubs feels better not eating gluten --- then he shouldn't eat it. We have a saying:

If it makes you sick, don't eat it.

 

Hugs

ItchyAbby Enthusiast
ItchyAbby
Posted

Yep, yep to everything squirmy says. I also want to ask - is your hubby currently gluten free? Or has he had extended periods of being gluten free? I ask because that can affect the outcome of the biopsies. If only I had known! I had 5 punch biopsies and all were negative. Then I learned (from the wonderful people here) that my "gluten light" diet may be to blame (among other things). And one of those other things is the use of topical steroids (i.e. hydrocrotisone) can cause negative results. Has he used those at all within the last few months?

 

The point being: it can be quite challenging to get a positive result from a biopsy - there are so many factors, including the derms and lab folks performing the work. But that does not mean that he doesn't have it! Don't let them rule it out just because of a negative biopsy.

squirmingitch Veteran
squirmingitch
Posted

Exactly what Abby said. AND if he's been on ANY kind of oral steroids within about 2 or 3 months prior to either dh biopsy OR endoscopic biopsy then the result is a  negative even if you have celiac/dh.

appletree729 Apprentice
appletree729
Posted
  • Author

THank you all for the replies :)

 

So yes - he has been gluten 'light' and gluten free on and off.  hmmm...  In any case, I actually don't think I've convinced him of the necessity of going to get a biopsy anyway so it's probably just as well..

 

I was just so (oddly) excited when his rash appeared again because I really wanted him to have it biopsied :(  He gets it a couple of times a year - but maybe that's not even typical of DH?  I wonder if it usually just sticks around no matter what.

 

But I figured that with his on and off gluten diet it'd be great to just get the biopsy now since we never know when the rash will come back...

squirmingitch Veteran
squirmingitch
Posted

In the very beginning or early days mine would come & go. 

ItchyAbby Enthusiast
ItchyAbby
Posted

In the very beginning or early days mine would come & go. 

Mine too. Sometimes it would disappear for months. And then, after a particularly stressful time, it flared and has been sticking around for months.

 

Also, mine did not have blisters in the beginning either. It started as a single, pimple-like dot, then more dots, all fiercely itchy. It was like that for three years. It wasn't until it got BAD that I had the huge vesicles, like clear marbles sticking out of my skin. EW!

 

So, Appletree, if I might make a suggestion: maybe your hubby can keep a food diary? Even just a notation in his calender of when he eats gluten (and iodine rich foods, if possible) and then other notations about when the rash flares up. This can be really helpful in seeing the correlations. In my food dairy, I started seeing that 2-3 days after eating gluten, the rash would start.

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squirmingitch Veteran
squirmingitch
Posted

Great suggestion Abby! AND it might help the hubs to see that gluten is his problem. Something tells me he doesn't want to deal with that but as we who have the rash can attest; the sooner you go gluten-free, the faster the rash will subside. The longer he waits, the longer he will pay. If he waits long enough; the rash will break out like he's never known before & then there will be hell to pay FOR YEARS!

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