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CNV2855

By CNV2855
in Dermatitis Herpetiformis

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CNV2855 Contributor
CNV2855
Posted

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?

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rosetapper23 Explorer
rosetapper23
Posted

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
CNV2855
Posted
  • Author

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
eatmeat4good
Posted

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
itchy
Posted

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
pricklypear1971
Posted

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
rosetapper23
Posted

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.

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Hopeful1950 Explorer
Hopeful1950
Posted

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
dilettantesteph
Posted

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

Metoo Enthusiast
Metoo
Posted

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
Di2011
Posted

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
lovegrov
Posted

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

richard

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