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 - How Long To Go Away?

lub2bmom

By lub2bmom
in Dermatitis Herpetiformis

Recommended Posts

lub2bmom Apprentice
lub2bmom
Posted

Good Morning,

I have had chornic hives for 6 years now -- after tons of testing for everything under the sun -- A friend suggested that it looks just like HD celiac... and she's right-- exactly like it -- and i have it on my arms, legs, itchy scalp, and face. I have been gluten free for about 3 weeks now and it's only left on my right arm --any one else have the HD version -- how long did it take to fully go into remission? I am so thankful for website like this-- i've found TONS of info on here! Thanks!

Diane

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

Celiac.com Sponsor (A8-M):


gluten free overseas Apprentice
gluten free overseas
Posted

Corn (esp high fructose corn syrup) gives me DH as well as gluten. You might want to consider eliminating corn for a while (and it's hard because it's in so much!!). Also, avoid iodine--for some reason, if you eat foods with iodine, DH will not go away. Get a salt that does not have iodine, don't eat salmon for a while etc. I hope you feel better soon!

lub2bmom Apprentice
lub2bmom
Posted
  • Author

That is really good to know! I learn new things on here every day!! My mom actually has a corn allergy ... so i could see myself having that as well! thanks for the tip!!

Hungrylady Rookie
Hungrylady
Posted

I can still see mine if I look in a 10x mirror but it's gone with the naked eye! I have been gluten-free (with the exception of getting glutened more often than I should) about 2.5 months. I am thrilled since it was smack dab on the middle of my face. The peeling is what took forever, especially on the hair line :(

Flasaltwater Apprentice
Flasaltwater
Posted

I can still see mine if I look in a 10x mirror but it's gone with the naked eye! I have been gluten-free (with the exception of getting glutened more often than I should) about 2.5 months. I am thrilled since it was smack dab on the middle of my face. The peeling is what took forever, especially on the hair line :(

When you say peeling is it like when a sunburn peels or is it like a dried up flaky what was once a scab. Just looknig for clerification becasue mine does not peel like a sunburn.

pricklypear1971 Community Regular
pricklypear1971
Posted

When you say peeling is it like when a sunburn peels or is it like a dried up flaky what was once a scab. Just looknig for clerification becasue mine does not peel like a sunburn.

Mine does both.

Hungrylady Rookie
Hungrylady
Posted

ughhh.....it makes me crazy. When I first get glutened it turns bright and I mean bright red (I look like I have a red mustache and beard, lol). Then it get raised and itches and stays like that for about oh it varies but I'd say about a week then it begins to peel. Dry flakes that keep peeling like a sunburn but no matter what you do, it keeps right on peeling-ironically exfoliating doesn't help at all. This goes on for about a dang month. Then it goes away (away to the naked eye). This same thing happens on my hair line but I swear from a different reaction (I also can't have eggs, nuts, milk, shellfish (although this one is confusing me right now).

Go figure. That's how I found out I have celiacs...the dermatologists!!!!!!!!

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

Celiac.com Sponsor (A8-M):


Flasaltwater Apprentice
Flasaltwater
Posted

ughhh.....it makes me crazy. When I first get glutened it turns bright and I mean bright red (I look like I have a red mustache and beard, lol). Then it get raised and itches and stays like that for about oh it varies but I'd say about a week then it begins to peel. Dry flakes that keep peeling like a sunburn but no matter what you do, it keeps right on peeling-ironically exfoliating doesn't help at all. This goes on for about a dang month. Then it goes away (away to the naked eye). This same thing happens on my hair line but I swear from a different reaction (I also can't have eggs, nuts, milk, shellfish (although this one is confusing me right now).

Go figure. That's how I found out I have celiacs...the dermatologists!!!!!!!!

Oh my goodness no I don't think I have anything like that. Maybe I don't have the DH that everyone talks about, this sounds different. I get actual blisters under my skin that end up breaking and scabbing over and hurt and itch really bad. No rash like your describing. I guess Ill find out Monday when I go to the Derm.

ravenwoodglass Mentor
ravenwoodglass
Posted

Oh my goodness no I don't think I have anything like that. Maybe I don't have the DH that everyone talks about, this sounds different. I get actual blisters under my skin that end up breaking and scabbing over and hurt and itch really bad. No rash like your describing. I guess Ill find out Monday when I go to the Derm.

Your description sounds very much like DH. If you are getting a skin biopsy make sure the derm is familiar with how to do the biopsy. They need to biopsy intact skin next to an active lesion and they also need to tell the lab that they are looking for DH.

Hungrylady Rookie
Hungrylady
Posted

Oh it sounds painful :( I hope you get some much needed answers. I really know nothing about DH only as it relates to my own situation. I will say it is one of the symptoms I didn't educate myself on. I am so busy with the ones that really hurt, like my hands. Which is why I like this section, I'm learning.

I wish you all the best, look forward to hearing how it goes...

pricklypear1971 Community Regular
pricklypear1971
Posted

DH can look very different person to person. The same person can have two types of lesions, and they can change over time.

I have tiny pinpricks, and if I get into something nasty - big swollen bumps filled with fluid.

Don't diagnose it based on look. Diagnose it based on how it acts, biopsy, and if it recedes with iodine and gluten withdrawal.

eatmeat4good Enthusiast
eatmeat4good
Posted

One year gluten free and DH sores still healing. The last 4 leasions are very minimal. I kept interfering with the healing by eating salty foods like chips and iodine containing foods like eggs and dairy...causing them to welt and the healing process had to start all over again. So much better at healing without those Gluten AND Iodine. Trace gluten is awful and will cause a huge reaction. I wanted to be one of those who healed in a matter of weeks, but alas, I was not that lucky. or perhaps it was me and I was not vigilant enough. However, it appears I will be free of all lesions in a couple of weeks which will actually be my one year anniversary of being gluten free. DH is really miserable, but I've gotten better about avoiding what causes me to react. If only I would stop testing dairy, and grabbing a handful of chips...Jeez!!

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. Scott Adams
      - Scott Adams commented on Scott Adams's article in Additional Concerns
      4

      Going Low-Gluten May Harm Good Gut Bacteria, Researchers Warn

      Researchers are working on T cell modification therapy that could one day let celiacs eat gluten.
    2. chrisinpa
      - chrisinpa commented on Scott Adams's article in Additional Concerns
      4

      Going Low-Gluten May Harm Good Gut Bacteria, Researchers Warn

      It's like a double edged sword.......we do one thing to improve a problem and cause another problem. I'd like to think the ultimate cure might be something that would train or modify the body to prevent the damage that gluten causes.
    3. Flash1970
      - Flash1970 replied to Ginger38's topic in Related Issues & Disorders
      7

      Shingles - Could It Be Related to Gluten/ Celiac

      You might try Heallix. It's a silver solution with fulvic acid. I just put the solution on with a cotton ball. It seemed to stop the nerve pain. Again, not in your eyes or ears. Go to heallix.com to read more about it and decide for yourself Also, I do think nerve and celiac combined have a lot to do with your susceptibility to shingles breaking out...
    4. trents
      - trents replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      GI DX celiac despite neg serology and no biopsy

      Celiac disease requires both genetic potential and a triggering stress event to activate the genes. Otherwise it remains dormant and only a potential problem. So having the genetic potential is not deterministic for celiac disease. Many more people have the genes than actually develop the disease. But if you don't have the genes, the symptoms are likely being...
    5. Roses8721
      - Roses8721 replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      GI DX celiac despite neg serology and no biopsy

      Yes, i pulled raw ancetry data and saw i have 2/3 markers for DQ2.2 but have heard from friends in genetics that this raw data can be wildly innacurate
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,495
    • Most Online (within 30 mins)
      7,748
    CrazyCatLady
    Newest Member
    CrazyCatLady
    Joined
  • Celiac.com Sponsor (A20):

  • Celiac.com Sponsor (A22):



  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Flash1970
      Shingles - Could It Be Related to Gluten/ Celiac

      By Flash1970 · Posted

      You might try Heallix.  It's a silver solution with fulvic acid. I just put the solution on with a cotton ball.  It seemed to stop the nerve pain. Again,  not in your eyes or ears.   Go to heallix.com to read more about it and decide for yourself Also,  I do think nerve and celiac combined have a lot to do with your susceptibility to shingles breaking out. 
    • trents
      GI DX celiac despite neg serology and no biopsy

      By trents · Posted

      Celiac disease requires both genetic potential and a triggering stress event to activate the genes. Otherwise it remains dormant and only a potential problem. So having the genetic potential is not deterministic for celiac disease. Many more people have the genes than actually develop the disease. But if you don't have the genes, the symptoms are likely being caused by something else.
    • Roses8721
      GI DX celiac despite neg serology and no biopsy

      By Roses8721 · Posted

      Yes, i pulled raw ancetry data and saw i have 2/3 markers for DQ2.2 but have heard from friends in genetics that this raw data can be wildly innacurate
    • Ginger38
      Shingles - Could It Be Related to Gluten/ Celiac

      By Ginger38 · Posted

      Thanks, I’m still dealing with the pain and tingling and itching and feeling like bugs or something crawling around on my face and scalp. It’s been a miserable experience. I saw my eye doc last week, the eye itself was okay, so they didn’t do anything. I did take a 7 day course of an antiviral. I’m hoping for a turnaround soon! My life is full of stress but I have been on / off the gluten free diet for the last year , after being talked into going back on gluten to have a biopsy, that looked okay. But I do have positive antibody levels that have been responsive  to a gluten free diet. I can’t help but wonder if the last year has caused all this. 
    • Scott Adams
      Help

      By Scott Adams · Posted

      I don't think any apps are up to date, which is exactly why this happened to you. Most of the data in such apps is years old, and it doesn't get updated in real time. Ultimately there is no substitution for learning to read labels. The following two lists are very helpful for anyone who is gluten sensitive and needs to avoid gluten when shopping. It's very important to learn to read labels and understand sources of hidden gluten, and to know some general information about product labelling--for example in the USA if wheat is a possible allergen it must be declared on a product's ingredient label like this: Allergens: Wheat.      
×
×
  • 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.