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When Is It Too Late To Test For DH?

ErinIsabel

By ErinIsabel
in Dermatitis Herpetiformis

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ErinIsabel Rookie
ErinIsabel
Posted

Hi Everyone,

I've recently accepted that I'm celiac (170 on tissue transglutaminase with 1-14 being normal & a miraculous recovery from being unable to eat almost anything for over 4 weeks, to feeling AMAZING in just a few days of being gluten free) - however, i have not had a formal diagnosis. This all came about 3 weeks after I had a c-section with my second child 4 months ago. I'm struggling to navigate this new lifestyle and diet.

Fast forward to my issue at hand - at the end of July I got a small 'pimple-ish' bump on my head, right behind my right ear on my hair line. I thought it WAS a pimple so i tried to pop it - no such luck. I figured it would go away on it's own. A few days later, it was a saturday and i woke up to it being extremely painful and sore - if it was touched, it caused so much pain i couldn't barely stand it. It was a hard bump now, and getting bigger - maybe the size of a quarter with lots of swelling. I was up most of the previous night - it was difficult to move around on my pillow for fear of it being touched and just the pain of it. So, I decided to head to the ER - there was no way i was waiting until monday to find out what was going on. They thought it was an infected lymph node - they drained/packed it, gave me some antibiotics and sent me home, telling me to come back 2x to have it repacked. a month later, it was finally starting to heal and i noticed a second pimple-ish thing - directly next to the old one. this time i went to my general practitioner who immediately thought it was a staph infection - she sent me to a dermatologist for a biopsy to confirm her diagnosis. The biopsy did confirm that i have a staph infection. She put me on 8 weeks of another antibiotic. When i first saw the derm, I asked her if this could in any way be related to celiac - she said no. I didn't really know much about DH, so I sort of forgot about it. However, i've been feeling not that great lately, and when i posted on another board the other day, everyone told me i needed to get the infection biopsied for DH. I immediately called and made an appointment to see another dermatologist on monday morning (my regular dermatologist is out of town) to get the biopsy done. The only thing i'm worried about is that the lesion on my head is healing - it's still a red/dark purple spot it's not oozing anymore. Can i still get a biopsy? when it is too late to test to DH? Anyone know if this appointment will be worth it or should I just wait and see if i get another one? Also - does this even sound like DH to anyone?

Thanks so much! Erin

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pricklypear1971 Community Regular
pricklypear1971
Posted

The biopsy comes from next to a lesion, on unaffected skin. Theoretically, a fresh lesion is best but your biggest problem will be that you're gluten-free for apx 3 months. The biopsy tests for antibodies, and they fall just like blood biopsies.

If it makes the difference between another round of antibiotics I'd try it. Most DH biopsies come back inconclusive but it may be a hint that it isn't staph. the biopsies usually find iga in the skin but not DH pattern. You need to do a lot of reading about biopsying DH. Start googling.

ErinIsabel Rookie
ErinIsabel
Posted
  • Author

The biopsy comes from next to a lesion, on unaffected skin. Theoretically, a fresh lesion is best but your biggest problem will be that you're gluten-free for apx 3 months. The biopsy tests for antibodies, and they fall just like blood biopsies.

If it makes the difference between another round of antibiotics I'd try it. Most DH biopsies come back inconclusive but it may be a hint that it isn't staph. the biopsies usually find iga in the skin but not DH pattern. You need to do a lot of reading about biopsying DH. Start googling.

thanks Pricklypear1971 - It was already biopsied for staph and it came up positive. Are you saying there's a chance that was wrong?

pricklypear1971 Community Regular
pricklypear1971
Posted

I'm not a doctor but I'd assume they could find staph in a DH rash. You should really ask your doctor. Let's put it this way, if I were in your position and they wanted me to take another round of antibiotics, I'd ask for a DH biopsy first unless they could explain why I still would need them if it was DH (meaning the staph was enough of an issue and it could be both).

My DH didn't get infected (but I did have one doc run away because he thought it was MRSA).

They tried culturing my rash once but it was pretty healed. Came up negative for everything.

I guess my point is that it could be both??

DH wouldn't cause you to feel bad (at least aside from insane itch and pain from the rash itself). Its gluten that makes you feel bad, and the DH is a result.

ErinIsabel Rookie
ErinIsabel
Posted
  • Author

I'm not a doctor but I'd assume they could find staph in a DH rash. You should really ask your doctor. Let's put it this way, if I were in your position and they wanted me to take another round of antibiotics, I'd ask for a DH biopsy first unless they could explain why I still would need them if it was DH (meaning the staph was enough of an issue and it could be both).

My DH didn't get infected (but I did have one doc run away because he thought it was MRSA).

They tried culturing my rash once but it was pretty healed. Came up negative for everything.

I guess my point is that it could be both??

DH wouldn't cause you to feel bad (at least aside from insane itch and pain from the rash itself). Its gluten that makes you feel bad, and the DH is a result.

Ok - that totally makes sense. I'm just going to keep my appointment in case they can culture it. Crossing my fingers it's not too late :)

pricklypear1971 Community Regular
pricklypear1971
Posted

Ok - that totally makes sense. I'm just going to keep my appointment in case they can culture it. Crossing my fingers it's not too late :)

It isn't a culture, it's a punch biopsy. You'll get a stitch.

ErinIsabel Rookie
ErinIsabel
Posted
  • Author

It isn't a culture, it's a punch biopsy. You'll get a stitch.

oooooh. yuck. glad you told me so i can prepare myself. i've never had stitches before. :unsure::blink::huh:

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pricklypear1971 Community Regular
pricklypear1971
Posted

Read this. Sections at bottom.

Open Original Shared Link

squirmingitch Veteran
squirmingitch
Posted

It could be that it was dh in the first place but when you went to the ER & they drained it you got staph from the hospital. Seems like everyone who gets near a hospital these days walks away with staph. They opened you up & that can expose you to staph. So when they did the culture they came up with staph.

What do you think about that scenario Prickly?

pricklypear1971 Community Regular
pricklypear1971
Posted

I honestly don't know. Could be just staph, could be DH, could be both.

Having been a victim of postpartum rashes that I have no idea what the origin, I vote for aliens.

squirmingitch Veteran
squirmingitch
Posted

Purple ones with horns.ohmy.gif

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