Dude note: To help celebrate and promote Celiac Awareness Month, I will be writing 30 blog posts over 30 consecutive days (weekends excluded) with the theme “30 Days of Helping 30 Celiacs”. Each post will be aimed toward helping one specific person or group of people. If you or someone you know needs help, guidance, advice or a shoulder to cry on, please contact me and I will do what I can to help. On the 31st day, you’re on your own. Totally kidding.
Today’s 30 for 30 blog post is for: All people suffering from dermatitis herpetiformis, but specifically Monika, who asked me to highlight DH this month, since it’s a pretty common celiac symptom and it’s rarely talked about on this site.
So where was I? Oh yeah…Jimmy Kimmel.
Just kidding. Today, by popular demand, we’re going to talk about DH.
What exactly is dermatitis herpetiformis?
Dermatitis Herpetiformis (DH) is a severe, itchy, blistering skin manifestation of celiac disease that is genetically determined and is not contagious. The name, dermatitis herpetiformis, is a descriptive name and is not related to either dermatitis or herpes, but is a specific chronic skin condition. The rash may occur in the form of small lumps, like insect bites and in some cases form fluid filled blisters. These small blisters are called vesicles. However the rash may appear hive-like, persisting in one area. DH can flare and subside even without treatment. The rash usually occurs on the elbows, knees, and buttocks. When the rash subsides, which it often does spontaneously, it may leave brown pigmentation or pale areas, where pigmention is lost. (source: celiaccentral.org).
(Dude note: Above is a revised description of DH as my first description was totally lame…my bad.)
I hear about DH from many in this community but I have never written about it. Kinda one of those things that since I don’t have it, I wouldn’t know what to say about it. But I got a request from a fellow celiac to please talk about it so we can give those suffering from DH some Gluten Dude love.
And being that her email was so dang cute and pursuasive…how could I resist?
So Monika…your itch wish is my command.
You mentioned that May is Celiac Awareness Month, and you’re going on your month of helping us in that awesome way that you do. I was hoping I could ask a bit of a favor…*bats eyelashes*
In a recent post, the person who emailed you mentioned having two Celiacs at home with Duhrings disease. I got kind of excited because Duhrings/Dermatitis Herpetiformis is so often forgotten in the Celiac conversation, or at best is usually just an afterthought “oh yea, and you might get a rash…and now back to crapping your pants…”
For some background info…for about 20+ years I got run of the mill diagnoses of eczema/dermatitis, and we never thought much of it. As a kid, my mom get special soaps, creams, fancy bath stuff, plain cotton clothing…and I just dealt with my ever worsening itching and pain. I’d have these awful reactions and not be able to function. I’d be freaking out with an anxiety attack, crying over my computer trying to handle all the constant work that grad school throws at you while wanting to tear my skin off and die.
I tried researching if this could be something specific, I even tried looking up autoimmune diseases at a friend’s suggestion…and I just couldn’t find much. I eventually figured out some kind of wheat connection after the awful linguini incident of ought twelve. I sorta ran with that as it was all the information I had to go off of…and I didn’t really know what to do with it.
In the way that so much of the population is oblivious to Celiac, I knew nothing of it. I had a coworker a couple years back who had some stomach thing, that’s it. It wasn’t until my sister started talking about Celiac that I started to figure this out a bit. When my rashes stopped, and I kept researching, I finally found a mention of DH and nearly started crying. I finally found something that described what I had.
It’s really fitting for me that May is Celiac Awareness Month, because the end of April marks my one year totally gluten free anniversary. The amazing year that I finally figured out my DH and immensely improved my quality of life by changing my eating habits. I feel amazing, and I want to shout it from the rooftops.
Here’s where that favor from so many paragraphs ago comes in…Dearest Dude, I guess I just wanted to ask you to highlight DH a bit. You’ve mentioned it in the past and, along with all the work you do, I love you for it. Maybe a tinge more though? I find that most times it isn’t even mentioned by name, just as “rash” under other Celiac symptoms.
The best description I’ve heard is this it’s like “rolling in stinging nettles naked with a severe sunburn, then wrapping yourself in a wool blanket filled with ants and fleas…” Which is so much more than “oh yea, you might get a bit itchy.”
So far this link has had the most comprehensive information, and it’s what I share with people if they ask:
So, pretty please with a cherry on top? Do me a favor and give us 15-25% of Celiacs with mutinous skin a bit of the spotlight?
You’re quite welcome Monika. Happy to get the word out and show some lovin’ for those suffering from DH. My heart goes out to you.
How many of you folks out there suffer from DH? Inquiring mind (mine) wants to know.