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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,017
    • Most Online (within 30 mins)
      7,748
    Sjcucinotta
    Newest Member
    Sjcucinotta
    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

    • sleuth
      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

      By sleuth · Posted

      He is not just a psychiatrist.  He is also a neuroscientist.  And yes, I have already read those studies.   I agree with benfotiamine.  This is short term while glutened/inflammation occurs.  As I had already mentioned, these symptoms no longer exist when this phase passes.  And yes, I know that celiac is a disease of malnutrition.  We are working with a naturopath.
    • knitty kitty
      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

      By knitty kitty · Posted

      Please do more research before you settle on nicotine. Dr. Paul New house is a psychiatrist.  His latest study involves the effect of nicotine patches on Late Life Depression which has reached no long term conclusions about the benefits.   Effects of open-label transdermal nicotine antidepressant augmentation on affective symptoms and executive function in late-life depression https://pubmed.ncbi.nlm.nih.gov/39009312/   I'm approaching the subject from the Microbiologist's point of view which shows nicotine blocks Thiamine B1 uptake and usage:   Chronic Nicotine Exposure In Vivo and In Vitro Inhibits Vitamin B1 (Thiamin) Uptake by Pancreatic Acinar Cells https://pubmed.ncbi.nlm.nih.gov/26633299/   While supplementation with thiamine in the form Benfotiamine can protect from damage done by  nicotine: Benfotiamine attenuates nicotine and uric acid-induced vascular endothelial dysfunction in the rat https://pubmed.ncbi.nlm.nih.gov/18951979/   I suggest you study the beneficial effects of Thiamine (Benfotiamine and TTFD) on the body and mental health done by Dr. Derrick Lonsdale and Dr. Chandler Marrs.  Dr. Lonsdale had studied thiamine over fifty years.   Hiding in Plain Sight: Modern Thiamine Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC8533683/ I suggest you read their book Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition.     Celiac Disease is a disease of malabsorption causing malnutrition.  Thiamine and benfotiamine: Focus on their therapeutic potential https://pmc.ncbi.nlm.nih.gov/articles/PMC10682628/
    • sleuth
      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

      By sleuth · Posted

      Thanks for your response.  Everything you mentioned he is and has been doing.  Tobacco is not the same as nicotine.  Nicotine, in the form of a patch, does not cause gastrointestinal irritation.  Smoking does. He is not smoking.  Please do your research before stating false information. Dr. Paul Newhouse has been doing research on nicotine the last 40 years at Vanderbilt University Medical Center.  
    • Jmartes71
      Fighting for a name

      By Jmartes71 · Posted

      Im so frustrated and still getting the run around trying to reprove my celiac disease which my past primary ignored for 25 years.I understand that theres a ray of medical that doctors are limited too but not listening and telling the patient ( me) that im not as sensitive as I think and NOT celiac!Correction Mr white coat its not what I think but for cause and affect and past test that are not sticking in my medical records.I get sick violently with foods consumed, not eating the foods will show Im fabulous. After many blood draws and going through doctors I have the HLA- DQ2 positive which I read in a study that Iran conducted that the severity in celiac is in that gene.Im glutenfree and dealing with related issues which core issue of celiac isn't addressed. My skin, right eye, left leg diagestive issues affected. I have high blood pressure because im in pain.Im waisting my time on trying to reprove that Im celiac which is not a disease I want, but unfortunately have.It  has taken over my life personally and professionally. How do I stop getting medically gaslight and get the help needed to bounce back if I ever do bounce back to normal? I thought I was in good care with " celiac specialist " but in her eyes Im good.Im NOT.Sibo positive, IBS, Chronic Fatigue just to name a few and its all related to what I like to call a ghost disease ( celiac) since doctors don't seem to take it seriously. 
    • trents
      Celiac getting dentures

      By trents · Posted

      @Martha Mitchell, your reaction to the lens implant with gluten sounds like it could be an allergic reaction rather than a celiac reaction. It is possible for a celiac to be also allergic to gluten as it is a protein component in wheat, barley and rye.
×
×
  • 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.