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 herpetaformis


Renee D

Recommended Posts

Renee D Newbie

I have Celiac and get a very itchy rash which I believe is dh. I have had a negative biopsy and have been to 5 dermatologists none of whom will prescribe oral dapsone due to the negative biopsy results. I’ve seen in this site that iodine makes dh worse. What foods need to be eliminated to remove iodine from the diet and for how long? 


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master
(edited)

Hi!

Not sure I understood you.  You have celiac disease and now have DH?  

Consider browsing through the DH section of the forum if you suspect it might be the cause of your rash and since you have celiac disease.  I think you will find that those with DH who have successfully treated their DH are SUPER careful.  It seems that 20 ppm threshold might be too much for them (it can be too much for many celiacs without DH too).  They avoid processed foods and do not eat out for the most part).  Drastic?  It works for them.  

Look at Squirmingitch’s and Apprehensive Engineer’s postings specifically.  They are active forum members and have been successful without medications, if I recall.

Consider trialing the Fasano diet for a month or so too.  

https://res.mdpi.com/nutrients/nutrients-09-01129/article_deploy/nutrients-09-01129.pdf?filename=&attachment=1

Here is a link about iodine and DH?  There is plenty more in the DH section.  

https://www.celiac.com/forums/topic/123926-link-between-iodine-intake-and-dh/?tab=comments#comment-1001164

Following this diet will help you determine if you were getting too much hidden gluten exposure into your diet.  Also, make sure you are getting follow-up care:

https://celiac.org/about-celiac-disease/treatment-and-follow-up/adult-pediatric-follow-up-checklists/

I feel better avoiding processed foods and I never eat out except at dedicated gluten-free restaurants.  This works for me.  My last repeat endoscopy revealed a healed small intestine.  ?

  •  
Edited by cyclinglady
Scott Adams Grand Master

Besides eliminating all gluten forever, many with DH must also cut back on foods high in iodine for good as well.

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,350
    • Most Online (within 30 mins)
      7,748

    JohannesW85
    Newest Member
    JohannesW85
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.8k

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)


  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Itsabit
      Hi. Yes. I’m awaiting my Biopsy results. I had B12 and other labs drawn on Mon, including Thyroid levels, as I am on Levothyroxine for radiation-induced hypothyroidism. Those levels should indicate any iodine issues. We had discussed the urine iodine, but he went with the thyroid instead. We’ll see.  I never had any of those Pellagra skin changes, or Casal’s necklace. Just itchiness in the supraclavicular hollows on both sides of my neck, and the anterior aspect as my neck radiation site.  The hollows had no changes until I scratched them, then I got the rash on those areas like the ones I have now scattered in different areas, usually on both sides with the exception of my anterior thighs. My right is affected, my left isn’t. I am 70 and have all my teeth as well - amazingly after having had max dose radiation in 2002. 😂 Unfortunately, because of long term changes in my oral mucosa because of it I can’t use mouthwashes - even non-alcohol ones, as they all burn my mouth like fire. Toothpastes burn as well, but not nearly as bad. I have an electric toothbrush but it is getting more difficult to use due to increasing trismus. Some days I cannot open my mouth wide enough to get the electric brush between my back teeth, so on those days I use a regular one. Gotta do what you gotta do.  Thank you for your input. Any insight I can get into this is appreciated. So, for now it’s the waiting game for test results, then we can form a treatment plan going forward. 
    • James47
      Hiya..I was 48 when diagnosed two years ago and I was in right bad way but strict gluten-free diet you will recover I promise x
    • James47
      Hi everyone I'm James, I hope you are all feeling well??. Accidentally had gluten at weekend and I've had severe diarrhea since sat night. My question is ,the longer someone like myself has been following a strict gluten-free diet will the exposure to gluten be lot more extreme as body now has been free of it well over a year ? Any information be much appreciated and any tips on how to stop the constant diarrhoea I have currently also be appreciated guys x
    • Cathijean90
    • Wheatwacked
      I use Listerine.  Rinse first to soften the tarter, then brush with Oral B electric toothbrush super sonic.  The $15 ones at the supermarket.  At 73 I still have all my teeth.  While a blood test can measure iodine levels, it's not the most accurate method for assessing iodine status, and urinary iodine excretion is considered a better indicator.  Have any of your dermatologists ever done a biopsy for dermatitis herpetiformis?  I may have missed it.  Note the similarity of Casal's necklace to one of your symptoms. Pellagra rash is a characteristic skin manifestation of niacin (vitamin B3) deficiency. It typically presents as:  Erythema: Red, sunburned-like areas of skin, often on the face, neck, arms, and legs.  Scaliness: Dry, flaky skin that may become thickened and crusty.  Hyperpigmentation: Darkened patches of skin, particularly in sun-exposed areas.  Casal's necklace: A dark, pigmented band around the neck.  I am currently taking these} Vitamin D 10,000 IU (250 mcg) DHEA 100 mg 500 mcg Iodine  10 drops of Liquid Iodine B1 Thiamin 250 mg  B2 Riboflavin 100 mg B3 Nicotinic Acid 500 mg 4 times a day for hyperlipidemia. B5 Pantothenice Acid 500 mg Vitamin C 500 mg     Selenium 200 mcg  Several times a week
×
×
  • Create New...