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

Please Take A Look.


CNV2855

Recommended Posts

CNV2855 Contributor

I just want to get confirmation. This is what my dermatologist STRONGLY believes is DH although all biopsies have been inconclusive. It flares when I eat gluten, becomes itchy, but hasn't disappeared in 4-5 years of being gluten free.

This morning I woke up feeling like I got hit by a mack truck, some really, really bad pain. Later on, this rash started itching. I think I got glutened.

However my most recent biopsy/endoscopy showed normal villi so I have healed.

What do you guys think?

Open Original Shared Link


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



Celiac.com Sponsor (A8-M):



rosetapper23 Explorer

Oh, yeah--that's what mine looks like. However, you'll probably get varying responses, because some people describe their DH as looking quite different.

Have you tried eliminating iodine yet? If you have but the rash continues to erupt, you might try changing the brand of dairy that you eat/drink, because some brands are high in iodine. That's what was causing my DH to continue to erupt. I've found that eating/drinking organic dairy works well for me, but others on this board have commented that they have come across organic brands that still contained iodine.

Your DH certainly looks uncomfortable--hope you start feeling better soon!

CNV2855 Contributor

Oh, yeah--that's what mine looks like. However, you'll probably get varying responses, because some people describe their DH as looking quite different.

Have you tried eliminating iodine yet? If you have but the rash continues to erupt, you might try changing the brand of dairy that you eat/drink, because some brands are high in iodine. That's what was causing my DH to continue to erupt. I've found that eating/drinking organic dairy works well for me, but others on this board have commented that they have come across organic brands that still contained iodine.

Your DH certainly looks uncomfortable--hope you start feeling better soon!

I get very little iodine in my diet. The rash flared from a can of Van Camp's Pork N Beans, the only processed food that I've eaten in weeks.

With me, being glutened isn't about the GI symptoms - I have autoimmune symptoms that flare. I just tested the Van Camp's and it showed positive on my home testing kit. Awesome!

eatmeat4good Enthusiast

Use the Thyca.com low iodine diet to limit iodine and see if it improves your healing.

My son's DH looks exactly like that. Mine is larger sores but fewer of them. The dark purple scarring is consistent with DH. It does fade with healing. Then mine turns pure white with no pigmentation. You have a very, very astute Dr.

I would also like to tell you that I have read that people with DH often do not always have the villous atrophy you expect to see with Celiac. They also very often test negative on blood and biopsy and yet they are at somewhat higher risk for the intestinal cancers associated with Celiac and they are more sensitive to trace gluten and cross contamination.

itchy Rookie

In my case the DH was more sensitive to gluten than the gastrointestinal symptoms. My GI symptoms disappeared quite quickly with a gluten free diet, and have never reappeared even when my DH become aggravated. I think that is common with people with DH.

Is it possible that your diet isn't quite gluten-free enough?

In any case DH can take a very long time to go away, though five years seems a very long time indeed.

pricklypear1971 Community Regular

I get very little iodine in my diet. The rash flared from a can of Van Camp's Pork N Beans, the only processed food that I've eaten in weeks.

With me, being glutened isn't about the GI symptoms - I have autoimmune symptoms that flare. I just tested the Van Camp's and it showed positive on my home testing kit. Awesome!

That sucks. Sorry.

Sucks even more that the beans test +, because that was my brand.

I have a hard time id'ing glutenings....I may trend more like you and get general autoimmune reactions and feel kind of flu-like. My rash flares if I get repeat exposure or lots of iodine.

Last time my rash flared badly I felt awful all over - the rash made me ache.

rosetapper23 Explorer

You may be ingesting more iodine than you're aware of, especially if you eat processed foods. Manufacturers don't identify whether or not the salt they use is iodized, so you can get it from chips, fries, processed foods, foods prepared by restaurants, etc. It's also in vegetables, especially asparagus.


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



Celiac.com Sponsor (A8-M):



Hopeful1950 Explorer

My DH has looked just like your rash at times.

Tell me, what home testing kit are you using? Is it expensive. How hard is it to use?

dilettantesteph Collaborator

Even if it isn't DH, there are other rashes caused by gluten: Open Original Shared Link

Metoo Enthusiast

I can't say forsure, because I haven't been diagnosed with DH.

But it looks exactly like the rash I just posted about breaking out on my neck looks like!! Its very itchy, especially if I touch or itch it...it makes it much more itchy. Its currently driving me nuts, looks terrible too.

Di2011 Enthusiast

Mine is just as described in above postings and your photo is similar to how my torso currently looks. I am yet to determine exactly how my current flare occured however contact with hard surfaces (zips on pants for example, scratching etc) certainly make for a painfully itchy flare.

I wish I could help. Lots of loose clothing (helps as a female wearing very loose fitting skirts etc) and ice packs (only thing that lets me sleep at night) helps.

If / when I ever figure what really is flaring it I will let you know!

lovegrov Collaborator

I'll pipe in with the negative -- my DH looked nothing at all like that.

richard

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. - Flash1970 replied to Ginger38's topic in Related Issues & Disorders
      7

      Shingles - Could It Be Related to Gluten/ Celiac

    2. - trents replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      GI DX celiac despite neg serology and no biopsy

    3. - Roses8721 replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      GI DX celiac despite neg serology and no biopsy

    4. - Ginger38 replied to Ginger38's topic in Related Issues & Disorders
      7

      Shingles - Could It Be Related to Gluten/ Celiac

    5. - Scott Adams replied to Silk tha Shocker's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Help


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,483
    • Most Online (within 30 mins)
      7,748

    AML2013
    Newest Member
    AML2013
    Joined

  • Celiac.com Sponsor (A20):



  • Celiac.com Sponsor (A22):




  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • Flash1970
      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
      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
      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
      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
      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.