Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Twin Cities Dermatologist

MNBeth

By MNBeth
in Doctors

Recommended Posts

MNBeth Explorer
MNBeth
Posted

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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


GFhopeful Rookie
GFhopeful
Posted

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 Explorer
MNBeth
Posted
  • Author
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 Explorer
MNBeth
Posted
  • Author

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 Rookie
GFhopeful
Posted

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 Newbie
Queener
Posted

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 Explorer
MNBeth
Posted
  • Author

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).

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Kirita
      - Kirita replied to Kirita's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Recovery from gluten challenge

      Thank you so much for your response! I have a follow-up appointment with her pediatrician next week, and also an appointment with her pediatric GI Dr. Your message gives me some ideas for questions to ask the doctors. My daughter went strictly gluten-free in January following her first endoscopy so I’m guessing her diet is pretty solid. She is compliant b...
    2. Scott Adams
      - Scott Adams replied to Kirita's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Recovery from gluten challenge

      While the positive endoscopy confirms the diagnosis, it's important to be skeptical of the idea that your daughter will simply "bounce back" to a pre-challenge state. The gluten challenge was essentially a controlled, prolonged exposure that likely caused significant inflammation and damage to her system; it's not surprising that recovery is slow and that...
    3. Scott Adams
      - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      1

      Brain fog

      The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium. Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend...
    4. trents
      - trents replied to Scatterbrain's topic in Sports and Fitness
      2

      Feel like I’m starting over

      Were you doing any of the new home construction yourself? Drywall compounds and adhesives used in construction have been known to cause problems for some celiacs.
    5. cristiana
      - cristiana replied to Scatterbrain's topic in Sports and Fitness
      2

      Feel like I’m starting over

      Hello @Scatterbrain and welcome to the forum I am sorry to hear you have had a return of your symptoms. My first thoughts were that stress can cause IBS-like symptoms - a friend of mine has been suffering a huge amount of stress and when that happens she gets diarrhea. But you say that you haven't got any bad abdominal issues, so perhaps you...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,284
    • Most Online (within 30 mins)
      7,748
    Marcia Ryan
    Newest Member
    Marcia Ryan
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Kirita
      Recovery from gluten challenge

      By Kirita · Posted

      Thank you so much for your response! I have a follow-up appointment with her pediatrician next week, and also an appointment with her pediatric GI Dr. Your message gives me some ideas for questions to ask the doctors. My daughter went strictly gluten-free in January following her first endoscopy so I’m guessing her diet is pretty solid. She is compliant but also reliant on others to make her food (at school and home) but she didn’t have this problem prior to the gluten challenge when she went strictly gluten-free. It really makes sense to me that the gluten challenge inflammation hasn’t healed and I will be asking her doctors about nutritional issues. I ask for anecdotal stories because the research surrounding the gluten challenge seems to be inconsistent and inconclusive (at least what I’ve been able to find!). Thank you so much for your response!
    • Scott Adams
      Recovery from gluten challenge

      By Scott Adams · Posted

      While the positive endoscopy confirms the diagnosis, it's important to be skeptical of the idea that your daughter will simply "bounce back" to a pre-challenge state. The gluten challenge was essentially a controlled, prolonged exposure that likely caused significant inflammation and damage to her system; it's not surprising that recovery is slow and that a subsequent exposure hit her so hard. The persistent fatigue is a major red flag that her body is still struggling, potentially indicating that the initial damage hasn't fully healed or that her system is now in a heightened state of reactivity. Rather than seeking anecdotal timelines from others, her experience underscores the critical need for close follow-up with her gastroenterologist to rule out other nutrient deficiencies commonly caused by celiac flare-ups, like iron or B12, and to consult with a dietitian to scrutinize her diet for any hidden sources of cross-contamination that could be perpetuating her symptoms. The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs.      
    • Scott Adams
      Brain fog

      By Scott Adams · Posted

      The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Brain fog, like other celiac disease symptoms, does improve after you to 100% gluten-free, and supplementation will also help.      
    • trents
      Feel like I’m starting over

      By trents · Posted

      Were you doing any of the new home construction yourself? Drywall compounds and adhesives used in construction have been known to cause problems for some celiacs.
    • cristiana
      Feel like I’m starting over

      By cristiana · Posted

      Hello @Scatterbrain and welcome to the forum I am sorry to hear you have had a return of your symptoms.  My first thoughts were that stress can cause IBS-like symptoms - a friend of mine has been suffering a huge amount of stress and when that happens she gets diarrhea.  But you say that you haven't got any bad abdominal issues, so perhaps you could share what other symptoms you are having? Cristiana  
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.