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Dermatologist - Dh Biopsy Strategy?

Metoo

By Metoo
in Dermatitis Herpetiformis

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Metoo Enthusiast
Metoo
Posted

My dermatologist appointment is in 2 weeks. I need some opinions on how to handle this. I am having second thoughts.

At this point, my hand/pinky is just finally healing up from my last glutening 5 weeks ago. 5 WEEKS ago. =( To describe what has happened, after I broke out in blisters, my pinky progressively peeled off the skin once the blisters broke open, then it left me with raw skin on the palm portion of my pinky for 2 weeks...then the side peeled off and left me raw there for about 2 more weeks.....which is incredibly painful/annoying, it even awakes me sleeping.

So...at this point I am a little freaked out about eating gluten 2 days before my appointment to make my hand break out. I fear that he won't agree to biopsy it. This dermatologist diagnosed my hand with 'stress-induced' ezcema. I just really really don't want to see how much worse it might break out this time then have to deal with my hand being raw like that again for so long and have him not biopsy it.

My second option at this point, is to go to the appointment, describe what happened and then see if I can make an appointment to come back in if he will agree to biopsy it next time. Then eat gluten before that appointment. WHICH...at that point, a part of me is freaked out about what if my hand doesn't break out that time!?!?!

I just see 2 options:

1) eat gluten show him my horrific looking rash (last time i broke out in THOUSANDS of blisters on my hand)...risk having him not agree to biopsy it.

2) Don't eat gluten and talk with him about the rash. See if I can get him to agree to biopsy it. Then make a follow up appointment, then eat gluten.

I would really like a biopsy at this point, it seems like an Easy, simple way to be diagnosed since my blood test was negative. And it could give us more direction on what to do with my kids...and for my sister.

I have been gluten free for a little over 8 weeks now. Not sure if this would mess the biopsy up. My plan is to eat gluten 2 days before the appointment. I broke out within 12 hours last time, so 2 days would give me an excellent start on the blisters.

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weaselfish Rookie
weaselfish
Posted

My dermatologist appointment is in 2 weeks. I need some opinions on how to handle this. I am having second thoughts.

At this point, my hand/pinky is just finally healing up from my last glutening 5 weeks ago. 5 WEEKS ago. =( To describe what has happened, after I broke out in blisters, my pinky progressively peeled off the skin once the blisters broke open, then it left me with raw skin on the palm portion of my pinky for 2 weeks...then the side peeled off and left me raw there for about 2 more weeks.....which is incredibly painful/annoying, it even awakes me sleeping.

So...at this point I am a little freaked out about eating gluten 2 days before my appointment to make my hand break out. I fear that he won't agree to biopsy it. This dermatologist diagnosed my hand with 'stress-induced' ezcema. I just really really don't want to see how much worse it might break out this time then have to deal with my hand being raw like that again for so long and have him not biopsy it.

My second option at this point, is to go to the appointment, describe what happened and then see if I can make an appointment to come back in if he will agree to biopsy it next time. Then eat gluten before that appointment. WHICH...at that point, a part of me is freaked out about what if my hand doesn't break out that time!?!?!

I just see 2 options:

1) eat gluten show him my horrific looking rash (last time i broke out in THOUSANDS of blisters on my hand)...risk having him not agree to biopsy it.

2) Don't eat gluten and talk with him about the rash. See if I can get him to agree to biopsy it. Then make a follow up appointment, then eat gluten.

I would really like a biopsy at this point, it seems like an Easy, simple way to be diagnosed since my blood test was negative. And it could give us more direction on what to do with my kids...and for my sister.

I have been gluten free for a little over 8 weeks now. Not sure if this would mess the biopsy up. My plan is to eat gluten 2 days before the appointment. I broke out within 12 hours last time, so 2 days would give me an excellent start on the blisters.

Hello Metoo,

Option # 3:

Since you seem to, in one sense, "trust" your current dermatologist ( even though you KNOW gluten triggers DH in you ), but your current dermatologist dismisses your DH rash as "stress related eczema". Hummm, how about this ???

1) Google search " celiac doctors " in your area, and contact them. Failing that:

2) Make a list of ALL dermatologists in your local area

3) Call each of their receptionists and ask them:

" I suspect I'm suffering from Dermatitis Herpetiformis due to gluten ingestion / Celiac disease, and though my blood test was negative, I'd like a biopsy of the lesions I'm experiencing when I do eat gluten foods. Would Dr. So-and-so be willing to work with me on this ? "

4) Make a list of all the doctors willing to work with you on this issue, check sites like " RateMD ", etc, and make a choice on one. Badda-boom-badda-bing-badda-bang. Dilemma solved.

Of course, you'll more than likely require an initial consultation with a new dermatologist and ideally, if the doctor is truly real ( keep your radar on ), set it up so you can ingest some gluten ahead of a biopsy visit to manifest the necessary lesions for such.

But remember, even given all the above effort on your part, you can't " make " your mom and sister take this seriously. I know, it sucks this free will thing, no ??? But ultimately, it is up to them to decide to address. No matter what, love them regardless !!!

Best of luck Metoo !!! The above verbiage is merely my strictly-ignorant, non-professional musings regarding your query,

WF

My question is this: If your current dermatologist won't consider your rash DH, but you know that when you eliminate gluten from your diet, the DH symptoms subside, how " far " can you really trust them ???

Skylark Collaborator
Skylark
Posted

I agree. You need to find a doctor who is knowledgable about DH and is willing to biopsy before you put yourself through that misery.

Alternatively you could just trust yourself. An awful, blistered rash is a really good reason to go gluten-free and not worry about it!

eatmeat4good Enthusiast
eatmeat4good
Posted

I'd be absolutely certain I had a dermatologist who was willing to perform a biopsy before I ingested any gluten at all. You know how awful it is and how long the reaction lasts and how hard it is to heal. Sooo unless you have a written agreement for a biopsy...don't hurt yourself for nothing. I saw 3 Chiefs of Dermatology at different hospitals and none would agree to biopsy. You can't make your mom and and sis believe??? Um...you can't make a Dr. believe it either. Keep the appt. and talk with him about biopsy but don't ingest gluten before if you aren't sure he will do it. It is amazing how many people have been refused. Also, be aware that the longer you are off gluten, the more likely you are to test negative even if it is DH and you have an active rash. Bunch of people have had that experience too. Then Dr. will say he was right...it was stress related ecxema.... oy... Good luck on this

  • 2 weeks later...
Metoo Enthusiast
Metoo
Posted
  • Author

Update - well I can't do it. I can't eat gluten. It took me until last week to finally get the raw open areas on my pinky to heal and I was gluten free that entire time. I talked it over with husband last night....Given this dermatologist quick to diagnose me with stress induced ezcema I am not sure if I am going to even discuss it with him, I am just going to go on a whim that morning whether I feel like it or not I guess.

I am nervous that at 2+ months gluten free that if I did decide to do the biopsy if it would be negative at this point just to being gluten free for this long also.

I am going to request that one of my kids have the blood test at his next appointment.

pricklypear1971 Community Regular
pricklypear1971
Posted

Ask around for a derm if there's a local Celiac group.

And don't gluten yourself on purpose.

My derm is willing to do a biopsy now, but even he told me not to do it on purpose. He saw how hard it was to control and has other Celiac patients. Unfortunately he didnt recognize my rash as DH in the beginning. I do admit it looked VERY different earlier on steroids.

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