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

Dh Can It Go Away Eventually?

hippo33

By hippo33
in Dermatitis Herpetiformis

Recommended Posts

hippo33 Apprentice
hippo33
Posted

ive had the symptoms for the last 6 years and no one knew what i had.finally after seeing my 3rd dermo he sed try staying away from beer for 3 weeks,mayby its the barley he sed.so i did my own research and what he failed to tell me was that there is wheat,barley,rye in almost everything i eat.my sores are on my face and a bit on my skalp,i should have did the reasearch earlier and now i probly have to do the gluten-free thing for ever.my diet has gone well for the past 7 days but 2 nights ago i had some whiskey and sprite zero and i have a little break out i dont know if its that or somthing else that i missed,it is hard lol.

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

Celiac.com Sponsor (A8-M):


tarnalberry Community Regular
tarnalberry
Posted
ive had the symptoms for the last 6 years and no one knew what i had.finally after seeing my 3rd dermo he sed try staying away from beer for 3 weeks,mayby its the barley he sed.so i did my own research and what he failed to tell me was that there is wheat,barley,rye in almost everything i eat.my sores are on my face and a bit on my skalp,i should have did the reasearch earlier and now i probly have to do the gluten-free thing for ever.my diet has gone well for the past 7 days but 2 nights ago i had some whiskey and sprite zero and i have a little break out i dont know if its that or somthing else that i missed,it is hard lol.

If you are 100% gluten free, then yes, DH goes away. But eventually. For a while, you may also need to eliminate sources of iodine from the diet. But it can take months for everything to clear up. (The DH is caused by IgG deposits under the skin, which require iodine to form. It takes a while for those deposits to be cleaned out.)

hippo33 Apprentice
hippo33
Posted
  • Author
If you are 100% gluten free, then yes, DH goes away. But eventually. For a while, you may also need to eliminate sources of iodine from the diet. But it can take months for everything to clear up. (The DH is caused by IgG deposits under the skin, which require iodine to form. It takes a while for those deposits to be cleaned out.)

can u give me an example of what has iodine in it,im kinda fortunate i only get 1-4 spots at a time but sometimes i can get a big one that looks like a cigarett burn its kinda gross i wonder y on the face it dont get as rashy as th ones on the knees ans elbows is it because they scratch them a lot?

lovegrov Collaborator
lovegrov
Posted
can u give me an example of what has iodine in it,im kinda fortunate i only get 1-4 spots at a time but sometimes i can get a big one that looks like a cigarett burn its kinda gross i wonder y on the face it dont get as rashy as th ones on the knees ans elbows is it because they scratch them a lot?

Lots of things have iodine but a couple of the bigger ones are iodized table salt and shellfish. You cat'y completely eliminate iodine nor would you want to. You need it to live.

richard

hippo33 Apprentice
hippo33
Posted
  • Author
Lots of things have iodine but a couple of the bigger ones are iodized table salt and shellfish. You cat'y completely eliminate iodine nor would you want to. You need it to live.

richard

maybe u are right i just started back up a couple days ago on my glucosamine and it has sulphate from shell fish mayby i should stop taking it for a while

JillianLindsay Enthusiast
JillianLindsay
Posted

Also, if you've only been completely gluten-free for a week then it will take time for your body to start repairing itself. I've also only been on the diet for 6 days. I am feeling a bit better but am told it takes 2weeks to 2months for your body to be back to "normal". Good luck :)

ive had the symptoms for the last 6 years and no one knew what i had.finally after seeing my 3rd dermo he sed try staying away from beer for 3 weeks,mayby its the barley he sed.so i did my own research and what he failed to tell me was that there is wheat,barley,rye in almost everything i eat.my sores are on my face and a bit on my skalp,i should have did the reasearch earlier and now i probly have to do the gluten-free thing for ever.my diet has gone well for the past 7 days but 2 nights ago i had some whiskey and sprite zero and i have a little break out i dont know if its that or somthing else that i missed,it is hard lol.
tarnalberry Community Regular
tarnalberry
Posted
Lots of things have iodine but a couple of the bigger ones are iodized table salt and shellfish. You cat'y completely eliminate iodine nor would you want to. You need it to live.

richard

Yup, you can't eliminate iodine (and as richard said, you don't want to), but you can - until the DH heals, not consume extra iodine - so eliminated iodized sald, shellfish, regular fish, seaweed, dairy, and eggs.

Once you no longer are having DH outbreaks (and are gluten free, consistently, the whole time), then you would allow more of those foods back in. But it isn't an intolerance thing - it's not a "avoid wholesale". It's just a reduction, so you're not getting *a lot* of it. (Most of us, in the US, get more than enough iodine, if you're eating dairy, meats, and sea-originated items.)

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

Celiac.com Sponsor (A8-M):


ang1e0251 Contributor
ang1e0251
Posted

My DH took about 6-8 weeks to completely heal. I didn't know anything about iodine at the time so didn't reduce it. Maybe mine would have cleared up sooner if I had.

mysecretcurse Contributor
mysecretcurse
Posted

I have been gluten free for going on 2 years (only occasional accidents) and my DH still is really bothering me. I haven't yet eliminated dairy and other grains such as corn. Should I? I don't understand it, because within 6 months of first going gluten free my skin got crystal clear, but then the DH began returning. I have no idea what is triggering me and I'm really confused and sad. :( I can't get testing to see what is bothering me, no job and no health insurance. :(

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      @Jane02, I hear you about the kale and collard greens. I don't do dairy and must eat green leafies, too, to get sufficient calcium. I must be very careful because some calcium supplements are made from ground up crustacean shells. When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly. This is safe...
    2. Jane02
      - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency. I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently...
    3. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hello, @Jane02, I take Naturewise D 3. It contains olive oil. Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets. Fractionated coconut oil is not the same as coconut oil used for cooking. Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the...
    4. Scott Adams
      0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,333
    • Most Online (within 30 mins)
      7,748
    Donna Chem
    Newest Member
    Donna Chem
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
×
×
  • 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.