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

Could This Be Dh?

sflick

By sflick
in Dermatitis Herpetiformis

Recommended Posts

sflick Newbie
sflick
Posted

I have had a rash now for over a month. Was initially just on my chest, then in the same place on the outside of each calf. Was treated with antifungal cream, then with Elemite and oral steroids. Rash was a tiny bit better until I went off steroids, then spread to upper legs, arms, upper buttocks/low back and upper back. It is symmetrical, intensely itchy. Went to dermatologist and he immediately suggested DH. Sent a biopsy to Mayo. It came back negative. When I tried to question whether it was a biopsy of the lesion or healthy skin next to the lesion, he cut me off and said he did the biopsy right. Now he says it is scabies and is treating me with steroid cream and Elemite again!! It does not look like any pictures of scabies I have seen and does not have the typical distribution of scabies. It has now spread to my abdomen. I wish I could attach a couple of pictures. Getting very frustrated as the itching is driving me batty. I have been on antihistamines for over two weeks now and using steroid creams, caladryl, etc. It doesn't ever go away.

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

Are you gluten free? If your not do you have other symptoms of celiac, tummy issues, migraines, fatigue, anemia, joint and muscle pain, GERD, mood issues etc for example? If you do has your doctor done a celiac panel?

If your not gluten free and your doctor hasn't tested you for celiac ask for the panel before you go gluten free. After you have had all testing for celiac done, including the endo and biopsy if you choose to have one, try the diet and see if it helps.

One test for DH that you can do at home is to put iodine on a small area on your arm and cover it with a bandaid. Leave it in place for a couple days and then look for the rash or irritation when you remove the bandaid.

sflick Newbie
sflick
Posted
  • Author

Are you gluten free? If your not do you have other symptoms of celiac, tummy issues, migraines, fatigue, anemia, joint and muscle pain, GERD, mood issues etc for example? If you do has your doctor done a celiac panel?

If your not gluten free and your doctor hasn't tested you for celiac ask for the panel before you go gluten free. After you have had all testing for celiac done, including the endo and biopsy if you choose to have one, try the diet and see if it helps.

One test for DH that you can do at home is to put iodine on a small area on your arm and cover it with a bandaid. Leave it in place for a couple days and then look for the rash or irritation when you remove the bandaid.

I went gluten free the day after the dermatologist told me he thought that was what I had. I did call my regular doctor and had her order the celiac panel that day. It was negative I believe. I don't really have the tummy issues, but I do have migraines occasionally. I did take ibuprofen last weekend and the rash did get worse. I have added gluten back in my diet less than 48 hours ago and I think the rash might be getting a little worse again. Had accupuncture to try to help with the itching. I don't want to take Dapsone as I am still nursing a baby.

Kay DH Apprentice
Kay DH
Posted

I recommend getting the Celiac Panel blood test, and make sure they test for the IgA and IgG antibodies because some people can have celiac but test negative because they are IgA deficient. I've had the symmetrical rashes for a few decades, mostly on the insides of my calves and back. It was never tested by doctors, so no diagnosis and no treatment beyond hydrocortisone. I went gluten-free last fall after getting the flu and start of GI problems, stiff joints, muscle aches, brain fog, etc. These all went away after going gluten-free; the rash took about 6 months. After getting glutened now I sometimes get a "ghost" of the rash that goes away in a few days. The skin biopsy can be influenced by what is sampled (lesion versus area around) and by how many areas were sampled. Did he take multiple biopsies or only one?

sflick Newbie
sflick
Posted
  • Author

He took two biopsies. One he sent to a local lab that showed "an allergic reaction". The other was sent to the Mayo Clinic and tested negative. Not sure if he sent the actual lesion or skin next to the lesion. I have several pics of my rash, but not sure how to attach them. I have added gluten back into my diet and am doing the iodine test now.

sflick Newbie
sflick
Posted
  • Author

I did the iodine test & after 24 hours, I have a distinct red rectangle on my arm. Does this definitely mean I have DH? Also my rash is definitely getting worse again after adding gluten back in my diet.

ravenwoodglass Mentor
ravenwoodglass
Posted

I did the iodine test & after 24 hours, I have a distinct red rectangle on my arm. Does this definitely mean I have DH? Also my rash is definitely getting worse again after adding gluten back in my diet.

I think it quite likely especially since the rash has gotten worse when you added gluten back in.

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

Celiac.com Sponsor (A8-M):


  • 4 weeks later...
BoydBT Apprentice
BoydBT
Posted

I have had a rash now for over a month. Was initially just on my chest, then in the same place on the outside of each calf. Was treated with antifungal cream, then with Elemite and oral steroids. Rash was a tiny bit better until I went off steroids, then spread to upper legs, arms, upper buttocks/low back and upper back.

Mycosis Fungoides is a very rare skin cancer. I was dx about 18 months ago and I am doing well with a special cream my Dr scripted for me. I just got my celiac disease dx. Since there is a link with celiac disease and cancer I wonder if that is why I got it.

Make sure you get this ruled out!~!!! Sounds very close to just where I got bloches and leasions.

T cell lymphoma of the skin

T cell lymphoma of the skin is the most common type of primary cutaneous lymphoma or skin lymphoma. It is also sometimes called mycosis fungoides. It is a type of cancer that starts mostly or entirely in the skin. It occurs when the white blood cells that protect us from infections (called lymphocytes) start to grow uncontrollably within the skin. In the beginning it often looks similar to psoriasis or eczema, and then it gradually becomes thicker. The cause is not known. The condition has a variety of treatments, and can usually be controlled.

It effects the chest, back, lower stomach, upper legs and groin area. The local dermatologist had never seen it before. The biopsy was a surprise to all of us.

I went to Fox Chase Cancer center in Philly and saw a speciality who only treats skin cancers. After applying a series of creams it goes dormant. But does recur or flare up which requires to start up the skin cream.

Again none of the Dr. thought of a celiac disease blood test.

Boyd

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 commented on Scott Adams's article in Multiple Sclerosis and Celiac Disease
      3

      Gluten-Free Diet Linked to Reduced Inflammation and Improved Outcomes in Multiple Sclerosis (+Video)

      I worried at one point on my journey whether I had MS, having many of the symptoms myself. However, my symptoms improved dramatically with high dose thiamine hydrochloride, Benfotiamine, and Thiamine TTFD. Thiamine deficiency symptoms overlap with MS symptoms, including changes on brain MRIs. Thiamine deficiency affected my eyes (light sensitivity),...
    2. trents
      - trents replied to Matthias's topic in Coping with Celiac Disease
      1

      Unexpected gluten exposure risk from cultivated mushrooms

      Welcome to the celiac.com communiuty, @Matthias! Yes, we have been aware that this can be an issue with mushrooms but as long as they are rinsed thoroughly it should not be a problem since the mushrooms don't actually incorporate the gluten into their cellular structure. For the same reason, one needs to be careful when buying aged cheeses and products...
    3. Matthias
      - Matthias posted a topic in Coping with Celiac Disease
      1

      Unexpected gluten exposure risk from cultivated mushrooms

      The one kind of food I had been buying and eating without any worry for hidden gluten were unprocessed veggies. Well, yesterday I discovered yet another pitfall: cultivated mushrooms. I tried some new ones, Shimeji to be precise (used in many asian soup and rice dishes). Later, at home, I was taking a closer look at the product: the mushrooms were growing...
    4. trents
      - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      how much gluten do I need to eat before blood tests?

      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen...
    5. Scott Adams
      - Scott Adams replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      IBS-D vs Celiac

      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that y...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,328
    • Most Online (within 30 mins)
      7,748
    VerafromNJ
    Newest Member
    VerafromNJ
    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

    • trents
      Unexpected gluten exposure risk from cultivated mushrooms

      By trents · Posted

      Welcome to the celiac.com communiuty, @Matthias! Yes, we have been aware that this can be an issue with mushrooms but as long as they are rinsed thoroughly it should not be a problem since the mushrooms don't actually incorporate the gluten into their cellular structure. For the same reason, one needs to be careful when buying aged cheeses and products containing yeast because of the fact that they are sometimes cultured on gluten-containing substrate.
    • Matthias
      Unexpected gluten exposure risk from cultivated mushrooms

      By Matthias · Posted

      The one kind of food I had been buying and eating without any worry for hidden gluten were unprocessed veggies. Well, yesterday I discovered yet another pitfall: cultivated mushrooms. I tried some new ones, Shimeji to be precise (used in many asian soup and rice dishes). Later, at home, I was taking a closer look at the product: the mushrooms were growing from a visible layer of shredded cereals that had not been removed. After a quick web research I learned that these mushrooms are commonly cultivated on a cereal-based medium like wheat bran. I hope that info his helpful to someone.
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen1Nc7EtAlJyJbU8EhB89ElCGFPRavEQkTFHv9V2Zh1EMAPRno7UajBpLCQ-1JfC5jKUyzfgsf7jN5L6yfZSgjhnwEbg6KKwWrKeghga8W_CAhEEw9N0.eDBrhYWsjgEFud6ZE03iun0-AEaGfNS1q4ILLjZz7Fs&dib_tag=se&keywords=buckwheat%2Bgroats&qid=1769980587&s=grocery&sprefix=buchwheat%2Bgroats%2Cgrocery%2C249&sr=1-4&th=1 Takes about 10 minutes to cook. Incidentally, I don't like quinoa either. Reminds me and smells to me like wet grass seed. When its not washed before cooking it makes me ill because of saponins in the seed coat. Yes, it can be difficult to get much dietary calcium without dairy. But in many cases, it's not the amount of calcium in the diet that is the problem but the poor uptake of it. And too much calcium supplementation can interfere with the absorption of vitamins and minerals in general because it raises gut pH.
    • Scott Adams
      IBS-D vs Celiac

      By Scott Adams · Posted

      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
    • Scott Adams
      Question

      By Scott Adams · Posted

      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
×
×
  • 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.