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

Looking for helpful advice/ help...

Beck123

By Beck123
in Dermatitis Herpetiformis

 Share

Recommended Posts

Beck123 Rookie
Beck123
Posted

Hi, I am a diagnosed celiac. I developed dermatitis herpetiformis, which led to my diagnosis about 4 years ago. I went strictly gluten free and my skin remained clear until about a year ago, after the birth of my daughter. After her birth, I have a lingering rash on the back of my neck that just will not go away. I am desperate.  I must be getting gluten from somewhere, but I simply cannot find its source. I never eat out, my family has went gluten free, I only eat foods that I know are gluten free, but for some reason I am still having symptoms of being glutened. I seem to have become more sensitive after the birth of my daughter as to where even the smallest amount of gluten sends my body upside down. Has any one else had this happen before after a pregnancy? Or is there something else that I am missing. I am desperate to find out what I am doing wrong and what I can do to get my body back to healthy again. Any input is appreciated. Thanks. 

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

Celiac.com Sponsor (A8-M):


trents Grand Master
trents
Posted
(edited)

Welcome to the forum, Beck123!

Are you certain the rash on the back of your neck is DH? Could it be something else? Have you had the rash biopsied to confirm it is DH? Could something in your regular "safe" food consumption list have had a formulation change so that it is no longer gluten-free?

Edited by trents
Scott Adams Grand Master
Scott Adams
Posted

Iodine can also trigger the DH rash in some people. Many with DH need to reduce their iodine intake, which means seafood, seaweed, iodized salt, etc.

knitty kitty Grand Master
knitty kitty
Posted

Welcome to the forum, @Beck123!

Longtime DH sufferer here.  I had to remove everything dairy from my diet.  Not only am I lactose intolerant (I can't digest the sugar in milk, lactose), I am sensitive to the protein in milk, casein.  Not only does milk cause continuing inflammation and damage like gluten, dairy is high in iodine.  

I also found it very helpful to take extra Niacinamide, Vitamin B3, in addition to my B Complex supplement.  Niacinamide is the nonflushing form of Niacin.  Niacinamide has been shown to improve DH.  

Cases of Dermatitis Herpetiformis Successfully Treated with Tetracycline and Niacinamide

https://pubmed.ncbi.nlm.nih.gov/30390734/

I took Niacinamide without the tetracycline and had improvement within two weeks.

Discuss with your doctor the benefits of supplementing with vitamins and minerals while on the gluten free diet which can have nutritional deficiencies.  Post pregnancy, our bodies can be insufficient in nutrients, vitamins and minerals because so much goes to the baby's growth and development. 

Correcting nutritional deficiencies is part of proper follow up care for Celiac people.  

Hope this helps!

Beck123 Rookie
Beck123
Posted
  • Author

@knitty kitty this is so helpful. I was actually eating dairy free before and during my pregnancy and my DH was completely clear. I began to eat dairy again after my baby and my it came back.  I didn’t think of this before, so thank you. Also, are you saying that if you eat dairy that your DH will flare up or is that only when you eat gluten? 
 

I have a doctor’s appointment next month & I will be sure to ask about the vitamins. 
 

Thanks so much. 

3 hours ago, trents said:

Welcome to the forum, Beck123!

Are you certain the rash on the back of your neck is DH? Could it be something else? Have you had the rash biopsied to confirm it is DH? Could something in your regular "safe" food consumption list have had a formulation change so that it is no longer gluten-free?

I never had my rash biopsied, but my doctor said that it was. I’ve been extra careful and I’ve been writing down what I eat everyday to see if it’s something that I’m eating. Thank for your help. 

Beck123 Rookie
Beck123
Posted
  • Author
3 hours ago, Scott Adams said:

Iodine can also trigger the DH rash in some people. Many with DH need to reduce their iodine intake, which means seafood, seaweed, iodized salt, etc.

Thank you! I don’t eat many of the foods you listed, but apparently dairy is night in iodine also. I will try cutting it out and see if it helps. Thanks!

knitty kitty Grand Master
knitty kitty
Posted

@Beck123,

Yes, if I eat dairy even without gluten, I will get DH outbreaks.

This article might be helpful....

Mucosal reactivity to cow's milk protein in coeliac disease

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1810502/

I also get eczema from dairy.  So I'm a flaky, bumpy, itchy mess if I consume dairy.

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

Celiac.com Sponsor (A8-M):


Rogol72 Collaborator
Rogol72
Posted

I've had DH a long time, diagnosed by skin biopsy. I can attest to everything that's been said about DH and the dairy/iodine connection. In addition to flaring DH, dairy makes me really tired and knocks me out. It's the casein protein, and/or the Microbial Transglutaminase food additive they put into dairy and other foods.

https://pubmed.ncbi.nlm.nih.gov/30543926/

https://www.frontiersin.org/articles/10.3389/fped.2018.00389/

It's worthwhile keeping a food and mood journal. 

Rogol72 Collaborator
Rogol72
Posted

I came across this webinar by the Canadian Celiac Association on DH if anyone is interested ...

https://www.youtube.com/watch?v=PAdmsNiyfOw

pplewis3d Rookie
pplewis3d
Posted
On 8/30/2022 at 4:42 PM, Scott Adams said:

Iodine can also trigger the DH rash in some people. Many with DH need to reduce their iodine intake, which means seafood, seaweed, iodized salt, etc.

 

On 8/30/2022 at 4:42 PM, Scott Adams said:

Iodine can also trigger the DH rash in some people. Many with DH need to reduce their iodine intake, which means seafood, seaweed, iodized salt, etc.

 

..and some brands of eggs have additional iodine in them!!!

 

trents Grand Master
trents
Posted
(edited)
55 minutes ago, pplewis3d said:

 

 

..and some brands of eggs have additional iodine in them!!!

 

How would they do that? Must be "chicken of the sea" hens. You're not talking about powdered eggs are you?

Edited by trents
Beck123 Rookie
Beck123
Posted
  • Author
On 9/1/2022 at 11:46 AM, Rogol72 said:

I've had DH a long time, diagnosed by skin biopsy. I can attest to everything that's been said about DH and the dairy/iodine connection. In addition to flaring DH, dairy makes me really tired and knocks me out. It's the casein protein, and/or the Microbial Transglutaminase food additive they put into dairy and other foods.

https://pubmed.ncbi.nlm.nih.gov/30543926/

https://www.frontiersin.org/articles/10.3389/fped.2018.00389/

It's worthwhile keeping a food and mood journal. 

Today is day 3 of no dairy and the rash is almost clear. So thank you all so much!!!

Rogol72 Collaborator
Rogol72
Posted

Helpful info for reference ...

https://celiac.org/about-the-foundation/featured-news/2015/10/dermatitis-herpetiformis-and-iodine-exposure/

 

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


  • Member Statistics

    • Total Members
      126,063
    • Most Online (within 30 mins)
      7,748
    MHavoc
    Newest Member
    MHavoc
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.1k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Vozzyv
      Weird Symptoms

      By Vozzyv · Posted

      Anyone else have intermittent left ear ringing and outer right ear pain? Both seem to happen in the evenings. 
    • cristiana
      Options - 7 year old boy - Helicobacter pylori and serology

      By cristiana · Posted

      If your son eventually becomes very symptomatic, that in itself will help keep him on the diet.  I had a friend who was diagnosed roughly the same time as me and she used to tell me a lot that she could get away with eating certain gluten containing foods.  (Not a good thing to do, but she did all the same).  In time she was unable to tolerate them anymore,  and is now very strict with her diet.   The football situation with the candy:   here in the UK at least, a lot of mainstream chocolate bars and sweets don't actually contain gluten (Bounty Bar, Snickers, Cadbury's Whirl, Crunchie etc) and you may find that that is the case where you live.      
    • jjiillee
      Daughter waiting for appointment

      By jjiillee · Posted

      Her appointment ended up getting canceled for today. So now we have to wait until Dec 3.
    • Scott Adams
      Daughter waiting for appointment

      By Scott Adams · Posted

      Let us know how things go.
    • Scott Adams
      Cross contamination issues with Food Processing Companies

      By Scott Adams · Posted

      Soy has been on our safe list for nearly 30 years, it is gluten-free. Most soy sauces do include wheat, and should be avoided. The following two lists are very helpful for anyone who is gluten sensitive and needs to avoid gluten when shopping. It's very important to learn to read labels and understand sources of hidden gluten, and to know some general information about product labelling--for example in the USA if wheat is a possible allergen it must be declared on a product's ingredient label like this: Allergens: Wheat.       In general if you see "gluten-free" on a label in the USA, Canada, Europe, Australia, etc., it does mean that the food is safe for those with celiac disease, and it does NOT mean that there is 19ppm gluten in it, as some people might lead you to believe. Whenever a company detects gluten in the 5-19ppm (most tests can't accurately go below this level) in foods which they have labelled gluten-free, especially a USA-based company (lawsuits in the USA are far more common and easier to win in such cases), they will immediately seek to find and eliminate the source of the gluten contamination. There is a very common myth or misconception that companies don't care at all if their products test between 5-19ppm, but they definitely do because a product recall could be just around the corner should they hit the 20ppm or higher level. Many people, including myself, now have home test kits like Nima, and companies are definitely aware of this.  
×
×
  • Create New...