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I Need To Have A Skin Biopsy

sickchick

By sickchick
in Dermatitis Herpetiformis

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sickchick Community Regular
sickchick
Posted

Can anyone recommend a Dermatologist in the Seattle are who has experience with DH? :)

Thanks in advance~ B)

sickchick

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Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

sorry, don't know any dermatologists in Seattle, but just wanted to warn you:

I had 2 skin biopsies, but the dermatologist did NOT warn me that having been gluten-free for a month and having been on prednisone would screw up the test results. Also, the biopsies were quite deep, and left two pea-sized scars on my arm that are still red and obvious and it's been 18 months since the biopsies were taken. :ph34r:

So I am left with ugly, permanent scars, and we didn't rule out celiac, or confirm it, either.

Since going gluten-free, my rash has only hinted at coming back a couple of times when I inadvertently had gluten, so I assume that it was, in fact, DH. Even if it wasn't, I definitely have a problem with gluten, but I decided NOT to push for an official diagnosis after reading here on this board of people who were denied health and/or life insurance after being diagnosed with celiac.

Are you sure you NEED the biopsy? Is there something other than celiac you are looking to either confirm or rule out?

sickchick Community Regular
sickchick
Posted
  • Author

Owee, F/F, I actually just got my Dr.Green Celiac book and it said if you are biopsied with a positive DH there was no need for an intestinal biopsy... I was hoping that would be an option

sickchick Community Regular
sickchick
Posted
  • Author

So I went to see my ND yesterday and I showed her the book and where it specifically said that if DH is diagnosed it is a confirmation of Celiac Disease and she shook her head at me. She said DH can be caused by a number of OTHER autoimmune issues (but in my internet searches ALL the sites said no it's caused by gluten intolerance) so she did say she'd be happy to run me through the blood tests. And I guess depending on the outcome of those, I might just have to break away from her and find someone new. I just have a long past with her she was there with me from the beginning 11 years ago.

lovelove

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

How frustrating for you.

I have never come across ANYTHING that said that DH could possibly be caused by anything other than celiac. Perhaps you could ask her where she read that?

I think she's got it bass-ackwards. She's thinking that other autoimmune issues cause the DH, when really, I think it's the gluten intolerance causing both the DH AND the other autoiommune issues.

I also wanted the skin biopsy to avoid the intestinal biopsy. I decided that an intestinal biopsy is a total waste of time for me, as I had already been gluten-free for a month by the time I had the skin biosy, and there is NO way I'm going back on gluten. What would it accomplish?

jerseyangel Proficient
jerseyangel
Posted

I have never heard of DH being caused by anything other than Celiac.

sickchick Community Regular
sickchick
Posted
  • Author

Thanks you two! I am telling you, I am crossing my fingers my bloodwork comes back positive, then I will just start with the Gluten-Free diet and won't think twice about it!!

I am sick of feling this bad. I've lost too much time to being sick. Not her ya know

:)

lovelove

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sickchick Community Regular
sickchick
Posted
  • Author

OMG I forgot, when I brought out my Dr. Green book, she gave me the look! :angry:

Too bad he is on the other side of the country.

sickchick

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted
OMG I forgot, when I brought out my Dr. Green book, she gave me the look! :angry:

sickchick

OMG, I know what you mean!

When they do that, I just want to say, "Look, I may not have an MD after my name, but I am just as intelligent and well-educated as you are, PLUS I have researched celiac disease for (fill in the blank)--How much research have YOU done on celiac disease?????????"

:ph34r:

Hang in there sickchick, so we can start calling you wellchick!!!

sickchick Community Regular
sickchick
Posted
  • Author

HAHAHA Beautiful!!!! :lol:

I can't wait to be wellchick lol ;)

  • 3 weeks later...
LoriC Apprentice
LoriC
Posted
OMG, I know what you mean!

When they do that, I just want to say, "Look, I may not have an MD after my name, but I am just as intelligent and well-educated as you are, PLUS I have researched celiac disease for (fill in the blank)--How much research have YOU done on celiac disease?????????"

:ph34r:

Hang in there sickchick, so we can start calling you wellchick!!!

When I told my family dr. that my dermatologist was treating me for DH, he gave me that look and said did he do a biopsy? I said no, he did a scraping tho..(not the same thing i guess) then he said hmmmm well i'd rather a gastro spec. tell me you have that, so he set me up with one..but anyway, we went into this discussion about celiacs, he said i doubt you have that, I said listen i no how i feel and i've been sick for a long time and no one has given me any answers other than, you have no gallbladder and you have IBS..well now maybe it wasn't IBS all those years. I've done a lot of research since my derm. put me on a gluten free diet and is treating me for DH and it's amazing the info i've found that fits me like a glove. I hope i only have to have the blood work..but i've been gluten free for almost a month now, i wonder after reading the boards here, if that will mess up my blood results, i'll make sure i tell my gastro dr. let him decide i guess.

Queener Newbie
Queener
Posted

fyi - I have DH and was diagnosed by Dr. Joseph Murray at the Mayo Clinic - a very well known expert in the field of Celiac research. He had a Mayo dermatologist take a punch biopsy of my rash and said that if it came back positive for DH, then it was a certainty that I had Celiac Disease and the endoscope would not be required for diagnosis of Celiac Disease, but that it should be done to get a reading of how badly damaged the villa were. Note: I had no gut symptoms when I got the DH rashes and only after going gluten free for many months did I begin to have gut symptoms (bloating, gas, diarrhea) when glutened. :(

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