Biopsy (finally Done Correctly!) Was Negative...

[mhalpin12]

Finally heard back about my 5th skin biopsy for DH. It was done correctly this time, taken from healthy skin near a lesion on my bum, and immunoflourescence to look for IgA was used. Result: negative for DH. Tissue taken from actual lesion came back as lichen simplex chronicus. Dermatologist said this was an eczema-like rash. NOT TRUE, as I found from a simple Google search. It's a secondary condition that consists of plaques of thickened skin that itch, and it's caused by long-term, continuous scratching, usually due to some kind of primary skin condition like psoriasis or ecema (or perhaps DH?). Anyway, I don't know what to do now.

I was gluten-free for about 10 days before this last biopsy was taken, so could that have rendered it negative?

I've been gluten-free for about 2 weeks now, and the rash is healing everywhere else on my body. It's leaving purplish scars, but no new outbreaks. The rash is healing in reverse order of emergence. My neck was the first place to heal, because it was the last place to break out. My bum was the worst area, the first area to break out, and it isn't healing up much yet.

Can you have DH and still get a negative biopsy result? Anyone experienced this? I'm reluctant to stop being gluten-free since the rash is better. I'm inclined to give it a couple of months and see if everything, including my bum, clears up.

I have to wonder if the original rash on my bum was DH, but that such prolonged irritation from clothing/scratching for 5 months made it develop into the lichen simplex chronicus.

Any advice?

Michelle in T?N

[Franceen]

Yes, it happened to me. I gave up on tests of all kinds because they were all negative. I was told that I would have to eat a lot of gluten for 3 weeks prior to the test. I had been gluten-free for about 3 months when I had the Biopsies (two, one from old lesion one from skin near that lesion, even though I thought it should be from new lesion - I had no new lesions!). Same goes for the blood work, negative, needed to challenge the diet and eat a lot of gluten. I was not going to do that so I've been gluten-free since Dec 2005 and FOR THE MOST PART DH free too. I get DH when I get some cross contamination, and that will always happen.

I think you asked before about how long it takes to go away initially: A LONG TIME. It took more than 3 months for it all to stop appearing. After 3 months I finally stopped getting new lesions and then it took months for the old ones to heal. They itch and get scratched even after they've scabbed! NASTY STUFF. The purple scarring is typical of DH, and eventually it will turn into white scars that look like pox scars, some dimpled, some flat.

Good luck!

[ChemistMama]

mhalpin12,

I also had a negative biopsy, done correctly. My bloodwork was slightly positive so the derm. wanted a biopsy. Went gluten-free and had a major flare (which isn't too unusual, I hear). I went on Dapsone to help it subside some, and that cinched it: within 36 hours on dapsone it started going away (years ago that was how they diagnosed DH, if it went away taking Dapsone it's DH! I wouldn't recommend it to anyone, however, it's a nasty drug).

lichen simplex chronicus, huh? That's what I have!!! Once the scaly patches form, my derm. recommended Amlactin, and alpha-hydroxy lotion, to help soften my skin...works great, but you have to use Sarna Sensitive (pain killer...not the regular Sarna with menthol!) because the amlactin can burn!!

I"ve been gluten-free for a year and have had no breakouts, just a lot of scarring and itching!!!

[Glamour]

I really want to know for sure if I have DH, so even though I do not have Insurance, I want to go to a good Derm to get Biopsy/Dapsone to see if it responds. The diet is just too expensive and difficult to maintain at 100%. But even if not DH, there are more and more Docs saying that gluten contributes to other skin rashes, eczema, etc. So ....

The butt rash is miserable, as well as the behind the knee/calf. I think clothing, elastic, friction etc aggravates this area more than exposed flat surfaces. The slightest pill, pocket or bump in clothing can send me into an itching fit. Sitting on the bum and the pressure, seems to irritate as well. I think that is why this are is prone to Lichen, and infections, because it does not get the same chance to breath and heal. Temperature changes and sweating aggravate these areas. Lotions and chemicals also suffocate the skin.

I might have to try Amlactin

100% cotton with no elastic,and a cotton that does not pill helps.

[gf4lyfe]

Hi Michelle,

Sorry to hear about your struggle with DH. I was diagnosed with DH this summer. I feel like you must have DH because your story is similar to mine. I've had celiac for two years and had been eating gluten free for over a year when I got DH. I had it everywhere. My problem was I had been eating oats which had been contaminated and once I cut those out and started use some aczone my rash started clearing up. Mine also cleared up "backwards" if you will, like you are saying yours is healing. I would say keep eating gluten free and hope that it goes away and never comes back. I was missed diagnosed and had a wrong biopsy before the real one came back right.

Good luck.

~Laura