How to navigate living with dermatitis herpetiformis

[Morgan Tiernan]

Hi there! I’m new here and very grateful to any information that can be provided on the topic of Dermatitis Herpetiformis.

I’m 22 years of age and have been struggling with this rash since the age of 19. We’re pretty sure it was brought on after having Covid (which resulted in shingles on my backside and strep a year or so later ) I struggle with intense itching and burning which often cannot be reached by a scratch. A find myself applying pressure on the skin in the early stages of it developing. Once it surfaces, small fluid filled blisters can be seen, most often on my chest, back, forearms and forehead (but has sometimes been in more places). We have only recently discovered its link to eating gluten, however getting doctors to listen to me has been a real struggle. They refused to test me for coeliac and offered me no follow up information or care plan, leaving me with no choice but to follow a gluten free diet off my own whim. The rash instantly improved in a couple of days, but of course I now struggle to be tested appropriately without having to go back to eating the dreaded stuff. Anytime I reintroduce it I become so unwell with dermatitis herpetiformis and tiredness. I am also struggling with outbreaks in between taking oral steroids to treat a flare up after being glutened (steroids provided by my private dermatologist thank goodness for him!)

We’re now in the process of waiting for a skin biopsy, but I’m finding the outbreaks in between difficult to manage. I enjoy going to the gym but also dance competitively. Sweat seems just to irritate like nothing else. dermatitis herpetiformis has got in the way of so many aspects of my life already and I’m struggling now to navigate it affecting me doing the things I enjoy. 
I’m after some advice from anyone who can relate or has experience of similar issues. I struggle to get this information from health care professionals so would love any advice or support from anyone if possible. 
Thank you so much for your time  

[trents]

Welcome to the forum, @Morgan Tiernan!

I find it outrageous that your physicians refused to test you for celiac disease despite what were obviously outbreaks of dermatitis herpetiformis. Every physician should know that dermatitis herpetiformis is a classic symptom of celiac disease! In fact, celiac disease is the only known cause for dermatitis herpetiformis and because dermatitis herpetiformis has such a distinctive appearance with the pustules in the bumps they should recognize what it was. There is just no excuse for this! You do not mention having any GI distress so I'm sure they were discounting the possibility of celiac disease because of that.

Anyway, one thing that might be helpful to you is to look into a low iodine diet. Iodine exacerbates dermatitis herpetiformis. There is also a med called Dapsone which is effective for dermatitis herpetiformis but it needs to be used with caution as it puts stress on the liver. So, if you were taking Dapsone you would need to have your liver enzymes checked regularly.

Not every dermatologist is familiar with the correct way to biopsy dermatitis herpetiformis so I hope it was done correctly in your case. My understanding is that the samples need to be taken next to the bumps and not on the bumps. At any rate, if your biopsy is positive for dermatitis herpetiformis you have your official celiac diagnosis. By the way you spell "coeliac" I'm assuming you live in the U.K. If so, there may be some extra benefits available to you if you have an official diagnosis.

Keep us posted.

[Scott Adams]

If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:

 

[Rogol72]

Hey @Morgan Tiernan,

Sounds just like my experience. I was diagnosed with dermatitis herpetiformis over 10 years ago. It appeared suddenly as a very itchy rash which looked like Eczema. When a steroid cream didn't clear it up, my Dermatologist (who had come across it before) suspected dermatitis herpetiformis and performed a skin biopsy which came back positive for dermatitis herpetiformis.

The important thing is to get a definitive diagnosis of dermatitis herpetiformis. What you've described sounds like classic dermatitis herpetiformis though. Hopefully, your Dermatologist has come across dermatitis herpetiformis before and performs the skin biopsy correctly as trents mentioned.

I've had the blisters on the knees, hips, forearms/elbows or anywhere that pressure is applied to the skin ... from clothing or otherwise. They itch like nothing on earth, and yes salt from sweat or soaps/shower gels will irritate a lot. I've been on Dapsone and it is very very effective at eliminating the dermatitis herpetiformis itch, and improved my quality of life in the early stages of getting on top of dermatitis herpetiformis while I adjusted to the gluten-free diet. But it does have various side effects as trents said. It can effect the red blood cells, lowering hemoglobin and can cause anemia, and requires regular blood monitoring whilst on it. You would need to consider it carefully with your Dermatologist if you do have dermatitis herpetiformis.

Here's a very informative webinar from Coeliac Canada discussing everything dermatitis herpetiformis related. 

https://www.youtube.com/watch?v=PAdmsNiyfOw

I've also found this recent interview with a Dermatologist about dermatitis herpetiformis to be educational. 

https://www.youtube.com/watch?v=rZnLeKutgUY

Keep the chin up and keep advocating for yourself for a proper diagnosis. Though it sounds like you're on top of that already.

Are you in the UK or Ireland? I'm curious because your surname is Irish.