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

Worsening Of Dh When Starting gluten-free Diet?

emerisle

By emerisle
in Dermatitis Herpetiformis

Recommended Posts

emerisle Newbie
emerisle
Posted

Is this a common experience? I thought that I had read somewhere that it was, but am having trouble finding it now.

I am newly diagnosed and struggling with the large learning curve necessary for the gluten-free diet as well as DH. I am awaiting my G6PD test to come back before starting a trial of dapsone...

Thanks! Beth

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

Celiac.com Sponsor (A8-M):


teebs in WV Apprentice
teebs in WV
Posted

Beth,

Everyone is different. I know - this is not the answer you were hoping for. Dapsone should help you immensely. It cleared up the worst of my DH symptoms in a few days (the gluten-free diet alone did not). It can take up to two years for the DH to go away (unless you are taking dapsone). So be patient and hang in there. It is tough at first, but it does get easier. If you stay gluten-free, you should be able to go off of the dapsone sometime. I have been at it for a year now - and I am extremely careful. But I had to increase my dosage to get my itching to subside.

lovegrov Collaborator
lovegrov
Posted

Everybody is different. I was unusual in that mine cleared immediately. And I mean that after I went gluten-free I never took another dapsone, even though I had been taking it for 20 years.

richard

tarnalberry Community Regular
tarnalberry
Posted

if it's DH, don't forget to significantly reduce iodine intake for a couple weeks/months, as iodine is part of the reaction that creates the deposits that lead to DH.

emerisle Newbie
emerisle
Posted
  • Author
if it's DH, don't forget to significantly reduce iodine intake for a couple weeks/months, as iodine is part of the reaction that creates the deposits that lead to DH.

So besides salt and seaweed, what should I avoid?

tarnalberry Community Regular
tarnalberry
Posted
So besides salt and seaweed, what should I avoid?

dairy, eggs, seafood... according to a google search.

  • 2 months later...
Katie618 Apprentice
Katie618
Posted

Eggs??!?!? i didnt know that would effect DH!!!!!!!

my sister told me about milk (thank God!! it has made a diff) i had no idea about eggs!!!

i stay away from iodized salt, seaweed (however, i do like sushi) and only have seafood when i have a sushi (besides outback, sushi it the only other place i can go on a "normal" date with my boyfriend)''

any other advice, my DH is going back and forth--some days good, most days not so good

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

Celiac.com Sponsor (A8-M):


Rkasyank Newbie
Rkasyank
Posted

I wonder too. I think my husband may have that, has dermatitis for 2 yrs, dermatologist unable to get rid of it completely. How long does one have to be on gluten-free diet for the dermatitis to go away?

Sue

Archived

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

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


  • Member Statistics

    • Total Members
      127,083
    • Most Online (within 30 mins)
      7,748
    Kiran Khan
    Newest Member
    Kiran Khan
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      69.9k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Rice, corn, and other gluten-free grains.

      By Scott Adams · Posted

      Your approach is spot-on—trusting reliable sources like Mayo Clinic and sticking to a gluten-free diet that works for you is the best way to navigate all the noise out there. The claim that rice and corn contain forms of gluten harmful to celiacs is indeed a misconception. While these grains do contain proteins that may technically be referred to as "glutens" in a broader scientific sense, they are structurally and functionally different from the gliadin found in wheat, which is the specific protein harmful to those with celiac disease. Scientific research overwhelmingly supports the safety of non-contaminated rice and corn for celiacs unless there’s a separate sensitivity or allergy involved. Some opinion pieces or alternative health sources may blur the lines by conflating these proteins, which can cause unnecessary worry. You're absolutely correct to focus on the distinction between scientifically validated information and anecdotal claims. It's also important to note that some people with celiac disease may develop sensitivities to other grains over time, but this is individual and not a universal rule. If you’re asymptomatic and thriving on a diet that includes certified gluten-free products with rice and corn, there’s no reason to change what’s clearly working for you. The internet is a breeding ground for well-meaning but misguided advice, and it’s easy to feel overwhelmed. Your instinct to validate claims through reliable research is exactly the right way to go. Keep enjoying your gluten-free meals, stick with trusted certifications, and don’t feel pressured to adopt restrictive diets that aren’t backed by science or tailored to your specific needs. Happy New Year to you too!
    • Scott Adams
      Enegy level extremely low

      By Scott Adams · Posted

      Healing and regaining energy after a celiac diagnosis can be a frustratingly slow process, but you're not alone in feeling this way! Everyone's healing journey is different, and factors like age, how long celiac was undiagnosed, and the extent of intestinal damage can all play a role. In general, villi can begin to heal within a few weeks to months after starting a strict gluten-free diet, but for some adults—especially those diagnosed later in life—it can take a year or more to see significant improvement. Studies suggest that older adults may heal more slowly, but it does happen with consistent gluten avoidance. Since you're already taking iron, vitamin D3, and a multivitamin, you're on the right track. Here are a few additional tips that might help: Be Patient with Your Body: It’s hard to wait, but healing takes time. Track your progress in small ways—maybe energy levels on a scale of 1-10 each week—to notice gradual improvements. Check for Other Deficiencies: Sometimes celiacs have trouble absorbing other nutrients, like B12, magnesium, or zinc, which can also affect energy levels. Your doctor may want to test for these. Consider Other Conditions: Fatigue can be linked to other issues like thyroid problems, adrenal fatigue, or even sleep disturbances, which can sometimes occur alongside celiac disease. It might be worth discussing this with your healthcare provider. Stay Active, but Pace Yourself: Gentle exercise, like walking or yoga, can help improve energy levels, but don’t push yourself too hard—listen to your body. Hydration and Balanced Meals: Make sure you're drinking enough water and eating a balanced gluten-free diet with plenty of whole foods. Sometimes highly processed gluten-free products can leave you feeling sluggish. Remember, healing isn’t just physical—it’s also mental. You’ve made a huge, positive change by going gluten-free, and your body is working hard to repair itself. It’s okay to feel impatient, but know that you're moving in the right direction. Hang in there—you’ll get there!
    • Lotte18
      Can food allergies like milk and soy flatten villi?

      By Lotte18 · Posted

      Hi Scott, I thought I'd be like "most people" and could go back to having dairy once my villi had healed.  But after dealing with neurological problems that cropped up long after my gut had healed it turned out that this just wasn't true.  I have no idea if celiac influences pancreatic enzyme production or if it's the other way around--for some of us-- but there is a very real relationship that isn't being discussed with patients.  The article just reiterates information that can mislead you if your real problem is pancreatic not villi related.  
    • Scott Adams
      Sprouts packaged roasted, salted nuts - says "made in a facility that processes wheat" - has anyone had a problem?

      By Scott Adams · Posted

      One of our current sponsors sells gluten-free nuts: https://www.tierrafarm.com/
    • trents
      Sprouts packaged roasted, salted nuts - says "made in a facility that processes wheat" - has anyone had a problem?

      By trents · Posted

      Welcome to the forum, @Amyinwyoming! Answers to your question that you might receive may not be helpful to you as an individual since sensitivity levels vary significantly within the gluten sensitive/gluten intolerant/celiac community. The other complicating factor is that low levels of gluten in a product may not cause obvious symptoms but may still generate low level inflammation in the small bowel. When in doubt, it is best to pass on the product. I'm not a particularly sensitive celiac so I might allow myself to eat something at a guest's house that was made from a food product with the kind of disclaimer label you describe but I typically shy away from buying them or consuming them when I have a choice.
×
×
  • Create New...