Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Dermatitis Herpetiformis Treatments: What Do You Use?

CTMK3121

By CTMK3121
in Dermatitis Herpetiformis

Recommended Posts

CTMK3121 Newbie
CTMK3121
Posted

Hi everyone!  I am new to this forum as I just discovered I have DH.  I had been diagnosed with a severe case of Herpes Simplex 2 for about 5 years before my doctor performed extensive testing that showed I do NOT have HSV 2.  I had always loved my whole grains, thinking I was eating healthy; little did I know!!  Only a month into my gluten-free diet, I am still having DH symptoms.  I am trying Dapsone for the first time, so we will see how it goes.

 

The point of this post is to find out what treatment options work for the rashes and blisters, what you have found effective or ineffective.  I would really like to know how other people deal with this ailment in their day to day lives.  

 

I prefer to use aloe vera directly from the plant.  I have found this to be extremely effective in healing the rashes more quickly.  I also use an rX lidocaine (2.5%) cream which alleviates the itching and burning.  And rX steroid cream applied 2-3 times a day seems to help as well.  I take epsom salt baths and rinse my mouth out with salt water (I get DH orally) which burns but helps heal the lesions faster.  I am one of the unlucky ones who gets the rash in my buttock/genital area (sorry if TMI).   Using the lidocaine and steroid creams mixed with aloe really helps!  

 

Also, what do you guys tell people who ask about the rash?  Mine tends to resemble a burn in the early stages on my hands, so I just tell them I had a kitchen accident or something.  I wish people would mind their own business, but I realize that the rash looks horrible and people might think it is contagious.  

 

Thank you for replying to my post!  Bless you all  :rolleyes:

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

Celiac.com Sponsor (A8-M):


squirmingitch Veteran
squirmingitch
Posted

https://www.celiac.com/forums/topic/96552-help-for-the-itching-stinging-burning-pain-of-dh/

 

I am not ashamed of my rash. I tell them the truth. You never know when you will be helping by making someone knowledgable about celiac disease & also about dh.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      129,910
    • Most Online (within 30 mins)
      7,748
    IrishGal83
    Newest Member
    IrishGal83
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • ehb
      Refractory Celiac disease - what to do

      By ehb · Posted

      @knitty kitty I have an appointment to go over the results tomorrow. Vitamin D was in the normal range. I’ve decided to start the gluten contamination elimination diet, while avoiding nightshades as recommended by the AIP. I am still hoping to get support from a nutritionist or advice from the doctor about supplements to make sure I’m getting enough nutrients. I’m still having a hard time sorting through all of the different brands and possible combinations
    • cristiana
      confirmed via biopsy, quite depressed

      By cristiana · Posted

      We've definitely all had such thoughts.  But as Scott says, it does get easier with time.  I'm not sure where you are posting from but in England where I live, over the last ten years or so most things I missed at first now have gluten free substitutes.   I still miss Twix bars, and chocolate Penguins (a type of biscuit) but I'm hoping sooner or later someone will create a decent substitute for them! One thing that I remember my husband said to me when I was feeling down one day  was: "Why don't you try to think of all the things you can still eat, rather than the things you can't?"  The list is long, and it did help - sort of!  
    • Scott Adams
      Quaker Instant Grits, gluten-free?

      By Scott Adams · Posted

      It looks like they are naturally gluten-free, but not labeled gluten-free. https://www.quakeroats.com/products/hot-cereals/grits/instant-grits-plain
    • Scott Adams
      confirmed via biopsy, quite depressed

      By Scott Adams · Posted

      I’m so sorry you’re feeling this way—your emotions are completely valid. A celiac diagnosis, especially at your age, is a huge adjustment, and it’s okay to grieve the foods and conveniences you’ve lost. Even with a supportive partner (which is wonderful!), the mental toll is real. Many of us have been there, staring longingly at ‘forbidden’ foods while feeling isolated or frustrated. It does get easier with time, though. The initial shock fades, gluten-free substitutes become more familiar, and you’ll find new favorites. But please be gentle with yourself now. If the sadness feels overwhelming, talking to a therapist or joining a celiac support group (online or in-person) might help. You’re not alone in this—we’ve all had those ‘why me?’ moments. Sending hugs (and solidarity) your way.
    • Scott Adams
      Waiting on biopsy after positive bloodwork, but also not really believing this is real

      By Scott Adams · Posted

      Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS. 
×
×
  • Create New...