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Dh Biopsy?

Metoo

By Metoo
in Dermatitis Herpetiformis

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Metoo Enthusiast
Metoo
Posted

I go back to my dermatologist the 25th for my acne problem.

Should I go ahead and eat gluten a day or two before my appointment ( I seem to break out within 12 hours of eating)..by day 2 I would have many blisters in different stages...in hopes maybe I could convince him to test for DH - he thinks its stress related ezcema.

If I am able to convince him...what is the biopsy like? I need to have him take samples from next to some of the blisters. Does he test it in his office or send it off someplace? I know he tests for skin cancer in his office. Is it best NOT to scratch and break open the blisters for the biopsy?

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weaselfish Rookie
weaselfish
Posted

I go back to my dermatologist the 25th for my acne problem.

Should I go ahead and eat gluten a day or two before my appointment ( I seem to break out within 12 hours of eating)..by day 2 I would have many blisters in different stages...in hopes maybe I could convince him to test for DH - he thinks its stress related ezcema.

If I am able to convince him...what is the biopsy like? I need to have him take samples from next to some of the blisters. Does he test it in his office or send it off someplace? I know he tests for skin cancer in his office. Is it best NOT to scratch and break open the blisters for the biopsy?

Hello Metoo,

First and foremost, the decision to do a biopsy is entirely yours. No one can advise you on this. However, it appears to me you are aware of your sensitivity to gluten and have determined that gluten effects DH in you. Do you really need more proof ??? I've read that biopsy's aren't always accurate, and given that he has predetermined it's " stress related ezcema " and not DH, do you think 1) you can convince him otherwise, and 2) he can help you aside from you remaining gluten free ??? Remember that one can lead a horse to water but can't always make that horse drink !!!

To my current knowledge you have only two pharmaceutical paths: 1) Dapsone, and 2) Sulfapyridine which was suggested to me here. If you desire to pursue the pharmaceutical path perhaps you should seek a second physician who might specialize in the Celiac / DH arena and be sympathetic to your / our affliction.

Since I'm self-diagnosed I have no idea where the biopsy would take place and neither seek or desire such. Personally, I don't need to go there as my quest to eliminate gluten in my diet has shown me just what I need to know. If you choose to go the biopsy route, I've read it's best not to abstain from gluten and to not scratch / break open any blisters / lesions beforehand.

Just my 1.5 cents. My best of luck to you Metoo,

WF

P.S. As you may well know, there is no cure for Celiac / gluten intolerance and the ONLY long-term effective treatment is to ingest NO gluten. Yes, to remain gluten-free we have to give up much, but for me it's a small price to pay given the alternative . . .

kmag Rookie
kmag
Posted

Your derm will do the biopsy in the office, but the samples get sent to a lab. I had one done in May and it took a few weeks for the result. I'm going to repeat the whole process again with a new derm in June and have considered eating some gluten to get some "fresh" samples.

The biopsy itself is no big deal. He/she will freeze the sample areas so that it will be pain free. Mine cauterised the area after doing the punch and it healed well. You'll be left with a pea-sized round scar, so keep that in mind when choosing your biopsy locations.

Good luck to you. I can't tell you whether or not to eat gluten prior to your appt, but I can tell you that when I went for mine, all my spots where kind of old and chronic and my biopsy result was negative. Go for the freshest, newest spots you've got and hopefully you'll get the answer you're looking for.

Hopeful1950 Explorer
Hopeful1950
Posted

STRESS ECZEMA...WHAT THE H###!!! That is a catch-all cop out diagnosis. I have heard it from three different derms and none of them even bothered to listen to what I had suffered with the itching and no sleep and the blistering etc. Try to be firm and insist that you feel like it is more than that. I wanted to yell at them and say that the rash was causing stress, not the other way around!

As far as eating gluten is concerned...I personally would find it hard to do after a year and 1/2 commitment to gluten-free. I wouldn't want to deposit more antibodies in my skin after all this time. If you aren't strictly gluten-free, or are in the very early stages of being gluten-free it might be worth it to get a good crop of blisters so your derm will pay attention. As other folks have said, that has to be your decision. As far as not scratching them...ideally you'd want big water filled things, or at least something blistery for them to look at under a magnifying glass. Otherwise they will just accuse you of being a "picker" or tell you that you have "neurotic excoriations" or "stress eczema" because you have scratched them off. It is hard for them to understand that sometimes the itch is just so bad that you have to get relief by clawing yourself.

For the DH biopsy they try to find an "active" lesion and then take the sample from clear skin next to it, so I doubt that it matters whether you have broken the blisters or not. If the derm does a DH biopsy directly ON the active lesion, the antibodies will not show up. Maybe print out some materials from this site and take them to your doctor.

Best of luck to you. May you be one of the lucky ones who gets a definitive answer before too much time passes.

Metoo Enthusiast
Metoo
Posted
  • Author

Hello Metoo,

First and foremost, the decision to do a biopsy is entirely yours. No one can advise you on this. However, it appears to me you are aware of your sensitivity to gluten and have determined that gluten effects DH in you. Do you really need more proof ??? I've read that biopsy's aren't always accurate, and given that he has predetermined it's " stress related ezcema " and not DH, do you think 1) you can convince him otherwise, and 2) he can help you aside from you remaining gluten free ??? Remember that one can lead a horse to water but can't always make that horse drink !!!

To my current knowledge you have only two pharmaceutical paths: 1) Dapsone, and 2) Sulfapyridine which was suggested to me here. If you desire to pursue the pharmaceutical path perhaps you should seek a second physician who might specialize in the Celiac / DH arena and be sympathetic to your / our affliction.

Since I'm self-diagnosed I have no idea where the biopsy would take place and neither seek or desire such. Personally, I don't need to go there as my quest to eliminate gluten in my diet has shown me just what I need to know. If you choose to go the biopsy route, I've read it's best not to abstain from gluten and to not scratch / break open any blisters / lesions beforehand.

Just my 1.5 cents. My best of luck to you Metoo,

WF

P.S. As you may well know, there is no cure for Celiac / gluten intolerance and the ONLY long-term effective treatment is to ingest NO gluten. Yes, to remain gluten-free we have to give up much, but for me it's a small price to pay given the alternative . . .

I would like the diagnosis, because I think at least one of my sons has it...but his rashes are so few and far between...I know they would never consider it DH, considering they think mine is stress related. Plus, I know having a diagnosis would enable me to convince my mom and sister to get tested.

I am newly gluten free also, for about 6-8 weeks. With one major opps a few weeks ago.

weaselfish Rookie
weaselfish
Posted

I would like the diagnosis, because I think at least one of my sons has it...but his rashes are so few and far between...I know they would never consider it DH, considering they think mine is stress related. Plus, I know having a diagnosis would enable me to convince my mom and sister to get tested.

I am newly gluten free also, for about 6-8 weeks. With one major opps a few weeks ago.

Hi Metoo,

Since your motive to have a biopsy and obtain documented confirmation would be used by you as a tool / proof to benefit your family / loved ones, I think you should go for it. Those of us who have done the research know Celiac / Dermatitis Herpetiformis is hereditary, and " paper proof " would be good leverage to impress upon your mother and sister that they too are candidates and may not yet realize it. As you probably know, those with Celiac that don't develop DH can develop serious small intestine damage and never have a clue till it's well advanced.

Are you keeping your son who you suspect has Celiac / DH on a gluten-free diet ??? Is he old enough to understand the implications of this disease and act accordingly ??? I surely hope so.

Congrats on staying gluten-free !!!

May I suggest that you demand a DH biopsy from your current dermatologist, and if they won't comply find a dermatologist who will !!! Remember, you are paying them which makes YOU the boss !!! Assert that !!! And personally, I would make sure I'd have blisters / lesions present when demanding a biopsy. Physical manifestation is hard to deny or ignore.

I wish you and your family members the best of luck and health.

WF

squirmingitch Veteran
squirmingitch
Posted

Someone on one of these threads in dh posted a link to a site where it described in detail exactly how the biopsy is to be performed as well as what the derm should order specifically for the lab to do to the sample. I thought I bookmarked it but can not find it right now. I think the poster was Dianedliam but can't be positive. Will continue to look for the bookmark.

At any rate I would doubt your derm will do it correctly even with instructions if you can get him to do it at all. If it were me, I would find a new derm & one with experience in taking biopsies of dh lesions. Otherwise I see a lot of frustration ahead of you.

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mushroom Proficient
mushroom
Posted

Open Original Shared Link

Dermatitis Herpetiformis Skin Biopsy Looks for IgA Under The Skin

When biopsying skin to determine if a rash is dermatitis herpetiformis, doctors look for deposits of Immunoglobulin A under the skin in a particular pattern. This distinctive granular IgA pattern is the hallmark of dermatitis herpetiformis.

To see these deposits, the physician must remove a sample of skin, stain it with a dye and examine it under a fluorescence microscope. If IgA deposits are present and in the correct pattern, then the person has dermatitis herpetiformis.

What To Expect From Your Dermatitis Herpetiformis Skin Biopsy Procedure

Dermatologists usually use what's called a "punch biopsy" to remove the skin and test it for dermatitis herpetiformis.

After injecting a local anesthetic, your dermatologist will use a tiny, cookie-cutter-like punch to remove a 4mm sample of skin. The incision can be closed with one stitch and generally heals with very little scarring.

It's important to have your dermatitis herpetiformis skin biopsy performed by someone who has diagnosed the skin condition before and knows how to do the biopsy. The skin sample must be taken from skin directly adjacent to the suspected dermatitis herpetiformis lesion, as opposed to directly from the lesion, since inflammation in the lesion can destroy the IgA deposits.

squirmingitch Veteran
squirmingitch
Posted

Thanks Mushroom for posting that. I wasn't able to find it.

eatmeat4good Enthusiast
eatmeat4good
Posted

I tried to get a biopsy several times...but all I walked out with was a diagnosis of neurotic excoriation. I would try to get a biopsy if I were you. Maybe your Dr. will be more open-minded. It was maddening, but being one year gluten free has cleared up the "neurotic excoriation"..and the depression and anxiety that went along with it. One thing I will say is that I have read that DH patients often test negative on skin biopsy and on intestinal biopsy and yet it may still be DH. So please keep that in mind in case you do get the biopsy and the result is negative. In that event only your dietary restriction and challenge can tell you for sure...but they will tell you in the end.

The DH reaction follows gluten and/or iodine ingestion...so be aware of the iodine connection too in case you or your son need it in the future. Best of luck and I hope your Dr. listens to you.

squirmingitch Veteran
squirmingitch
Posted

Metoo, You might want to check in the doctor forum to see if there's a good Dr. in your area that others have had experience with.

https://www.celiac.com/forums/forum/6-celiac-disease-doctors/

If not, then try posting your location & telling that you need a good derm experienced in dh.

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