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

Dermatis Heretiformis


missybean

Recommended Posts

missybean Apprentice

Hello, I'm wondering if I have DH. My primary believes that I do finally but I haven't had a skin biopsy therefor not a firm diagnoses. I have suspected celiac for a couple of months since I got pregnant and many aillments have become worse. I was most gluten free before pregnancy....I thought I had a bad candidia problem and seemed to have a major improvement on that diet. When I became pregnant I started eating more grains and alot of my proir symptoms became worse again.......diarrhea,joint pain, worsening of hives and the list can go on. Anyway I was getting this awful itchy,prickly sensation all over my body for the past couple of months. Sometimes I feel like I'm going to lose my mind. Mostly the rash looks like tiny pin pricks and has kind of a peachy pink hyperpigmentation. Mostly the rash is on my hands is between my finger on the tops of my hands and all over my feet on top. After my doc suspected DH she said go 100% gluten free which I have and I have noticed and massive improvement. No more diarrhea, acne started getting better, skin stopped itching within a week or so and I had this hyperpigmentation on the tops of the knuckles and on my ankles and the top of my foot for almost 2 years and I just noticed the other day, Its gone! Weird. No doctors could ever tell me what it was...it was really dark too......dark brown and i'm really fair skinned. People would always ask what it was. It was imbarrassing. Now I started itching again and i have noticed I have a red rash on my elbow that is really sore looks like little hives, the skin between my finger looks extremly dry and looked like it might crack and bleed and now I have one area where there is a red hive with a scab in the middle of it and it is really sore. I made an appiontment with the dermatologist and I'm going to ask for a biopsy but I wonder do I have to be ingesting gluten to get an accurate test or is the fact that i'm having a blister a sign that I accidently ingusten gluten? I also have large hives all over between my breasts and on my breasts and a have these blood blister looking things everywhere on my breasts too. I have also noticed these blood blister looking things on other places like between my legs on top og my feet where it itches. When I see pics of what DH looks like...mine doesn't look like that. Mine looks for like hives or blood blisters except for the blister I got the other day. Are ther different severities of DH?


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



Celiac.com Sponsor (A8-M):



missybean Apprentice
Hello, I'm wondering if I have DH. My primary believes that I do finally but I haven't had a skin biopsy therefor not a firm diagnoses. I have suspected celiac for a couple of months since I got pregnant and many aillments have become worse. I was most gluten free before pregnancy....I thought I had a bad candidia problem and seemed to have a major improvement on that diet. When I became pregnant I started eating more grains and alot of my proir symptoms became worse again.......diarrhea,joint pain, worsening of hives and the list can go on. Anyway I was getting this awful itchy,prickly sensation all over my body for the past couple of months. Sometimes I feel like I'm going to lose my mind. Mostly the rash looks like tiny pin pricks and has kind of a peachy pink hyperpigmentation. Mostly the rash is on my hands is between my finger on the tops of my hands and all over my feet on top. After my doc suspected DH she said go 100% gluten free which I have and I have noticed and massive improvement. No more diarrhea, acne started getting better, skin stopped itching within a week or so and I had this hyperpigmentation on the tops of the knuckles and on my ankles and the top of my foot for almost 2 years and I just noticed the other day, Its gone! Weird. No doctors could ever tell me what it was...it was really dark too......dark brown and i'm really fair skinned. People would always ask what it was. It was imbarrassing. Now I started itching again and i have noticed I have a red rash on my elbow that is really sore looks like little hives, the skin between my finger looks extremly dry and looked like it might crack and bleed and now I have one area where there is a red hive with a scab in the middle of it and it is really sore. I made an appiontment with the dermatologist and I'm going to ask for a biopsy but I wonder do I have to be ingesting gluten to get an accurate test or is the fact that i'm having a blister a sign that I accidently ingusten gluten? I also have large hives all over between my breasts and on my breasts and a have these blood blister looking things everywhere on my breasts too. I have also noticed these blood blister looking things on other places like between my legs on top og my feet where it itches. When I see pics of what DH looks like...mine doesn't look like that. Mine looks for like hives or blood blisters except for the blister I got the other day. Are ther different severities of DH?
ChemistMama Contributor

Yes, you'll need to be ingesting gluten for a postive biopsy (or a positive blood test), but you'll have to be on gluten for several weeks, which, if you're already gluten-free, could be quite painful and uncomfortable. You could ask for a biopsy, since the gluten does stay in your skin for awhile, but I was gluten-free for 2 months and then had a biopsy and it was negative (taking dapsone proved that it was DH!). You could also try the iodine skin test, there are several threads about how to do that, it was how DH was previously diagnosed before blood tests and dapsone. Good luck!

ravenwoodglass Mentor

For blood tests and an endoscopic biopsy you have to be on a full gluten diet. DH is a different matter. If you have an active lesion that is all you need. You don't need weeks on a challenge for it. The doctor will need to biopsy the area next to a lesion to look for DH not the lesion itself. If you have no active lesions then you might want to do a short challenge, just long enough for lesions to appear.

Archived

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

  • 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. - 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?

    2. - Scott Adams replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      IBS-D vs Celiac

    3. - Scott Adams replied to Amy Barnett's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Question

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,323
    • Most Online (within 30 mins)
      7,748

    bttyknight83
    Newest Member
    bttyknight83
    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
      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
      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
      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.
    • catnapt
      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
×
×
  • 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.