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

My Thoughts On "types" Of Dh


sisterlynr

Recommended Posts

sisterlynr Explorer

I read the online copy that is pinned regarding types of DH. It was obvious that DH has been around for many years and doctors did not know the cause. I have had all of the various types of lesion presentations that were mentioned in this book.

I had to chuckle when reading the article when he stated it was a mental and nervous issue. If the book is still referenced by doctors today, this may be why Dermatologists ask patients to see a mental health doctor. I can imagine doctors thinking it was mental/nervous due to the intense itching, burning and stinging when they weren't aware of the cause.

  • 1 month later...

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



Celiac.com Sponsor (A8-M):



learning2cope Apprentice

Online copy of what book where? Is the book way out of date? If so why would it be pinned (here?) anywhere? I'm confused.

squirmingitch Veteran

It is pinned here:

 

https://www.celiac.com/forums/topic/84513-descriptions-of-dh-types/

 

And if you read the entire thread, your questions will be answered.

sisterlynr Explorer

Online copy of what book where? Is the book way out of date? If so why would it be pinned (here?) anywhere? I'm confused.

 

Check the first discussion that is titled "Descriptions of DH".   One reason it was pinned was for reference.  Doctors way back in the day have noted the appearances of many skin issues. The book is very old.

 

It is common for Dermatologists to tell patients they need to see a mental health doctor for their DH.  I saw several posts on this site and thought, why would a doctor think this was a mental issue?  Well, it happened to me!   :D   The 4th Dermatologist looked at my skin and told me that it was all in my 'mind'.  He told me that I would see a spot and scratch it and then it would be itchy and presto . . . I would have a rash and it would soon be over my whole body.  I was in total disbelief and shock!  I looked at him and told him, "Baloney".  

 

The subject of mental health was mentioned in the reference that is pinned, along with great descriptions of DH.  Several have asked on this site if DH had to present in a blister form.  

 

I saw my 5th Dermatologist just this past month.  In discussing my previous biopsies and doctors, I told him about the doctor telling me 'it was in my head'.  This last Dermatologist is the head of Dermatology at the University here.  He examined me, told me it was Dermatitis Herpetiformis due to the results of being gluten-free and on Dapsone.  I also had photos of the blisters before they started healing.  He then offered me an explanation as to why the other doctor would tell me such.  Not sure what your skin looks like but mine has thickened and is a dark reddish color in several areas.  The rash coated me like a blanket on my belly, back and buttocks. ( He told me that some people can scratch for no apparent reason and their skin will have the same appearance and the other doctor probably felt I needed medication to calm 'me', so I wouldn't scratch.)  He was kind to even address this but it sure didn't change my opinion of the other doctor.  

 

When I read the pinned article it made me think that if still used in colleges or universities, this could be the reason so many Dermatologist tell their patients to see a psychiatrist.  Hope this alleviates your confusion as to why I wrote this post. 

Lady Eowyn Apprentice

A psychologist told me that the DH on my back and scalp was self harming (!!!!!! :o ).

Doc told me that I was spreading it by scratching it !!!!

This was some years ago and although I had no idea what it was myself - I did know that I WASN'T self harming.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Rogol72 replied to klmgarland's topic in Dermatitis Herpetiformis
      3

      Help I’m cross contaminating myself,

    2. - ShariW commented on Scott Adams's article in Frequently Asked Questions About Celiac Disease
      4

      What are Celiac Disease Symptoms?

    3. - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      3

      Help I’m cross contaminating myself,

    4. - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      3

      Help I’m cross contaminating myself,

    5. - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,909
    • Most Online (within 30 mins)
      7,748

    Hmart
    Newest Member
    Hmart
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Rogol72
      @klmgarland, My dermatitis herpetiformis didn't clear up until I became meticulous about cross contamination. I cut out gluten-free oats and all gluten-free foods, dairy and gluten-free rice. Additionally, getting the right amount of protein for my body weight helped significantly in my body's healing process ... along with supplementing with enough of all the vitamins and minerals ... especially Zinc and Magnesium. I went from 70kg to 82kg in a year. Protein with each meal 3 times daily, especially eggs at breakfast made the difference. I'm not sure whether iodine was a problem for me, but I can tolerate iodine no problem now. I'm off Dapsone and feel great. Not a sign of an itch. So there is hope. I'm not advocating for the use of Dapsone, but it can bring a huge amount of relief despite it's effect on red blood cells. The itch is so distracting and debilitating. I tried many times to get off it, it wasn't until I implemented the changes above and was consistent that I got off it. Dermatitis Herpetiformis is horrible, I wouldn't wish it on anyone.  
    • klmgarland
      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
×
×
  • 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.