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

Is This Dh Too?

Guest Kathy Ann

By Guest Kathy Ann
in Dermatitis Herpetiformis

Recommended Posts

Guest Kathy Ann
Guest Kathy Ann
Posted

I don't have a diagnosis of Dh. I AM celiac, however. And it never occurred to me that my skin issues might be gluten related as well.

Does dh have to manifest itself in visible bumps, welts, rashes, etc.? Does it ever do its dirty work "under" the skin?

I don't have any active rashes or oozing places or angry bumps. But my skin does have issues. Skin injuries heal very slowly and stay red a long time. And yet I've never been a sun worshipper or injured my skin in any way. I've actually been a very health oriented person. I've used only health food store cosmetics for 30 years. And yet my skin looks "damaged." It's very disappointing. I also have rosacea.

All my life I have been itchy and very sensitive. ALL clothing tags have to be removed and I can't tolerate synthetic fabrics at all. I can't wear wool, ramie or linen either because of their inherent scratchiness.

If I exercise at all, I begin to itch and my fingers swell. When I perspire, my skin itches from it.

Just wondering if this sounds familiar to anyone with Dh. Or is it likely unrelated?

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

Celiac.com Sponsor (A8-M):


teebs in WV Apprentice
teebs in WV
Posted

Hi Kathy. Doesn't sound like DH to me, but many celiacs on this board appear to have various skin issues. I have DH but I also have other skin issues.

DH is visible blisters - itchy, oozy, itchy, gross, and itchy (did I mention itchy?).

jerseyangel Proficient
jerseyangel
Posted
I don't have a diagnosis of Dh. I AM celiac, however. And it never occurred to me that my skin issues might be gluten related as well.

Does dh have to manifest itself in visible bumps, welts, rashes, etc.? Does it ever do its dirty work "under" the skin?

I don't have any active rashes or oozing places or angry bumps. But my skin does have many moles, random freckles, raised permanent wartlike bumps, age spots and tags. Skin injuries heal very slowly and stay red a long time. And yet I've never been a sun worshipper or injured my skin in any way. I've actually been a very health oriented person. I've used only health food store cosmetics for 30 years. And yet my skin looks "damaged." It's very disappointing. I also have rosacea.

All my life I have been itchy and very sensitive. ALL clothing tags have to be removed and I can't tolerate synthetic fabrics at all. I can't wear wool, ramie or linen either because of their inherent scratchiness.

If I exercise at all, I begin to itch and my fingers swell. When I perspire, my skin itches from it.

Just wondering if this sounds familiar to anyone with Dh. Or is it likely unrelated?

Wow! Your whole post sounds familiar to me! Every bit of it.

I don't think it's DH, though. And since I've been gluten-free (16 months), the situation has gotten somewhat better. I kid you not, a mole I had on my forehead dried up around the edges recently and fell off while I was washing. A couple spots I had near my hairline have all but disappeared, too.

I never would have thought to mention it, but I wonder if it has something to do with Celiac and being gluten-free?

My itchiness was much better, too until I ate tomato sauce last week. I was intensely itchy and even had burning for several days. I don't doubt that there's some sort of skin connection.

Have you ever been "stung" by the water in the shower?

  • 3 months later...
givingthanx Newbie
givingthanx
Posted

Hi. I haven't been diagnosed yet, but I'm going through that process. I've got so many symptoms, and there are so many related conditions in my family (including thyroid issues, irritable bowel syndrome, loss of hair, lactose intolerance, fibromyalgia, lupus, diverticulitis), that I'll be extremely surprised if I don't have it. Plus, going gluten-free fixed me. And then I had a little gluten and experienced symptoms again.

Anyway, I itch when I run - especially the thighs and stomach. Actually, it usually happens when I haven't exercised for a while and then start back. The first few times I exercise, I'll itch. It gets so bad I have to stop. HAVE to stop. It just itches worse and worse and gets red.

If I continue to exercise on a daily basis, it goes away.

givingthanx Newbie
givingthanx
Posted

Hi. I did some more research on this (since I have the same itchy skin from exercise), and it turns out it can be more serious than I thought, and YES, it can be related to gluten.

It is called exercise-induced urticaria or anaphylaxis. Actually, the urticaria is the hives. The anaphylaxis means "a severe allergic reaction."

Don't trust my explanation. Do your own research, but this is my impression of what happens: When you reach a point past your physical conditioning, you itch. If you don't stop exercising when you feel the itch come on, it can even get so bad that you pass out from super-low blood pressure. It can even get so bad that you can die. So it's important to stop when the itching comes on.

This web page shows that there can be a gluten connection:

Open Original Shared Link

It can also be caused by other things - allergies, medications, etc.

Please do an Internet search on "exercise-induced urticaria."

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
      133,331
    • Most Online (within 30 mins)
      7,748
    Kristy2026
    Newest Member
    Kristy2026
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Who's Online (See full list)

  • 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.