Twin Cities Dermatologist

[MNBeth]

Hi all,

I'm new here, not yet diagnosed, and think I have DH. I'd like to have my rash biopsied, but really don't want to waste my time with a lab where they don't have much experience with DH. (I've spent enough time with doctors who don't have much experience with celiac!)

Anyone had DH diagnosed in the Twin Cities area? North side is ideal, but I'll take what I can get!

Thanks,

Beth

[GFhopeful]

I know it's a bit of a drive but I would consider just driving down to Mayo Clinic. They have a Celiac expert in the GI department who can hook you up with all you will need if it is DH and make you feel confident in the diagnosis. I am on the north side (WHite Bear Lake) and it only took an hour and 15 minutes to drive down there. It's not as far as you might think and they are one of the best for diagnosis and information on Celiac and I think they would be great for a DH diagnosis as well.

[MNBeth]

I know it's a bit of a drive but I would consider just driving down to Mayo Clinic. ...

I won't mind the drive one bit if they'll take me! I actually decided yesterday that I should try to get in there, and I've been trying to screw up my courage to make the call. I hate making phone calls, and I've heard people say that they couldn't get in without sending in biopsy results, etc., which I don't have, so that makes me all nervous. I'm such a sissy.

But I'm gonna call! Might even try to talk them into seeing my son, too, while we're at it.

Thanks for the input,

Beth

p.s. We're up on the Coon Rapids/Andover border, fyi.

[MNBeth]

Mayo is a no-go for now. The appointment secretary said they'll only consider seeing you if you've already had a positive biopsy and can send them the information. Of course, if I had a positive biopsy, why would I need to go?!

Argh. Back to the drawing board.

[GFhopeful]

sorry to hear that - that's silly. so you have to waste your time 1st and then they'll take you, huh? that's annoying. i did have to send slides and paperwork for them to take me but i thought that was because i was questioning the diagnosis and it would be a second opinion. i didn't know they wouldn't take you otherwise. i'll keep me ears open about a demotologist but don't know one to refer you to right now.

[Queener]

I don't get it. If you have Celiac Disease, I assume you are gluten-free. If you are truly gluten-free, I don't see why you would have a rash - if it is in fact DH. The treatment for DH is gluten-free diet.......

I had only the DH symptoms and read enough to know that if I had DH, I was Celiac. I contacted Dr. Joseph Murray at Mayo to see if he would see me and he did - his secretary was the one who set up my appt and biopsy with the dermatoligist (Dr. Dragge).

[MNBeth]

I am not a diagnosed celiac. I am hoping to *get* diagnosed, and am tired of wasting my time w/doctors who aren't up to date on celiac issues, so I was hoping someone could recommend a dermatologist who was clearly well-versed in DH.

I've since made an appointment with a dermatology office that seems informed about this condition. I don't know what the deal is with the celiac clinic at Mayo. It almost seems like it just depends on who answers the phone when you call. Or maybe you just need the right #. I called the appointment desk, not having access to Dr.Murray directly.

Anyway, I think I'll just go w/the local dermatologist and see if I can get my diagnosis that way. I'll be really, really surprised if that isn't what it is.

I was gluten-free for only three weeks; when the pathologist at the dermatology office didn't feel confident that being gluten-free wouldn't affect the outcome of my biopsy, I decided to go back to gluten for the remaining three weeks before the test. After that, I'm pretty sure I'm done with gluten for good. Even then, from what I've read, it may well take a long time for the rash to clear up.

I'm glad you got in at Mayo, though; it's so nice to be dealing with doctors who know this condition!

I don't get it. If you have Celiac Disease, I assume you are gluten-free. If you are truly gluten-free, I don't see why you would have a rash - if it is in fact DH. The treatment for DH is gluten-free diet.......

I had only the DH symptoms and read enough to know that if I had DH, I was Celiac. I contacted Dr. Joseph Murray at Mayo to see if he would see me and he did - his secretary was the one who set up my appt and biopsy with the dermatoligist (Dr. Dragge).