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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,207
    • Most Online (within 30 mins)
      7,748

    WAB19
    Newest Member
    WAB19
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
    • Xravith
      I'm very confused... My blood test came out negative, I checked all antibodies. I suppose my Total IgA levels are normal (132 mg/dl), so the test should be reliable. Still, I'm not relieved as I can't tolerate even a single biscuit. I need to talk to my doctor about whether a duodenal biopsy is necessary. But it is really possible to have intestinal damage despite having a seronegative results? I have really strong symptoms, and I don't want to keep skipping university lectures or being bedridden at home.
    • Scott Adams
      They may want to also eliminate other possible causes for your symptoms/issues and are doing additional tests.  Here is info about blood tests for celiac disease--if positive an endoscopy where biopsies of your intestinal villi are taken to confirm is the typical follow up.    
    • Scott Adams
      In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease--and you are above that level. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children! May I ask why you've had so many past tTg-IgA tests done, and many of them seem to have been done 3 times during short time intervals?    
×
×
  • 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.