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. 

[Morgan Tiernan]

16 hours ago, trents said:

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.

Hi Trents,

thank you so much for your help and support.

Yes it’s not ideal from my surgery practice. This is just one of the many problems I have experienced with them, we’ve had to pay to go to a private consultant now instead (I’m from South Wales in the UK, spot on about the spelling of “coeliac”! I completely forgot there was another way of spelling it around the world!) The dermatologist I have been seeing over the last few months has been amazing. And thank goodness for places like google and forums like these, I don’t think I would’ve ever thought it could be gluten!

Interesting about the iodine. I’ll definitely start to limit this out of my diet. It makes sense as the places of irritation are places I sweat or pressure points (wrists, waist etc.) Dapsone was mentioned in my last appointment also. He’s reluctant to put me on it just yet, probably just until this biopsy is done so we can confirm for definite. At the moment I’m being put on prednisolone (oral steroids) every time I either become glutened or my symptoms reach an ultimate. I think he’s said if I need to be in them for any more than 3 times a year, dapsone will be more considered. I’m keen to go on it as every time I come off the prednisolone I can see the blisters creeping back. I’ve got loads that have burst on my hairline. I also start to get flaky/peeling skin as well which I’m not sure is related? 
 

As well as limiting iodine, is there anything else that might help irritation with sweat? Is it better to wear more loose fitted clothing? Can I apply something to stop the irritation of sweat whilst i’m exercising? 
 

Thanks for all your help so far! I will keep you all updated on my journey! 

[Morgan Tiernan]

12 hours ago, Rogol72 said:

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. 

Hey @Rogol72!

thanks for your very helpful response. Those videos are great and super educating! I’ve forwarded them to my family members too as often it can be very difficult to explain to those around you just what you’re going through. Though, I’m fortunate that they’re super supportive and keen to help me get to the bottom of the problem.

Interesting how you mentioned soaps and shower gels irritating too! Is it better to rinse off the sweat straight after exercising just with some cool water? Additionally, is minimising soap in those areas during showering helpful too? Or is there a particular soap that may be helpful!

I have some more questions about dapsone too, if you don’t mind me asking. As mentioned in my response to Trents, I take prednisolone for when I am glutened or when my symptoms become too unbearable. With oral steroids it’s usually a 4 week dose as I have to reduce my dose to slowly come off them. How long can you take dapsone for? Can it impact your immune system in the same way as oral steroids (I have to be super careful I don’t pick up any infections whilst on my steroids as my immune system is compromised.)

Yes, I’m from South Wales in the UK. Though my grandfather is Irish, explaining my surname (very well spotted!)

[knitty kitty]

Welcome, @Morgan Tiernan,

The best thing to clear my dermatitis herpetiformis is to take Niacin, Vitamin B 3, the form called nicotine acid, the kind that causes flushing of the skin.  Flushing Niacin clears my skin quickly.  

Yes, the flushing might seem really strange, but it opens the tiny capillaries in the surface of the skin which helps remove the antibodies that gather in those pustules.  The flushing lessens the longer Niacin is taken, but still works at keeping the blisters away.  

Be sure to take a B Complex and Benfotiamine, a form of Thiamin , Vitamin B 1.  Covid, shingles and other infections like strep throat deplete our Thiamine quickly.  Having frequent infections can indicate low Thiamine.  We have a higher metabolic demand during infections, physical trauma or surgery, emotional and mental stress, and while physically active like dancing.    Thiamine has anti-virus and antibacterial properties.  The eight essential B vitamins work together.  Taking Benfotiamine in addition to the B Complex is safe and nontoxic.  Excess B vitamins are easily excreted because they are water soluble.  New Celiacs are often low in vitamins and minerals due to malabsorption.  Vitamin D can help calm the immune system.  Following a low histamine Paleo diet , like the Autoimmune Protocol Diet by Dr. Sara Ballantyne, a Celiac herself, is also very helpful.  Steroids lower histamine, but the low histamine AIP diet is safer.  

This research may be old, but Flushing Niacin does work!!!

Nicotinic acid therapy of dermatitis herpetiformis

https://pubmed.ncbi.nlm.nih.gov/15412276/

P.S. Wearing natural fibers helps my dermatitis herpetiformis.  Synthetic fibers keep sweat next to the skin, causing further irritation.  Natural fibers wick moisture away, keeping skin dry and exfoliated.

Edited 14 hours ago by knitty kitty
Added Post Script

[Rogol72]

19 minutes ago, Morgan Tiernan said:

Hey @Rogol72!

thanks for your very helpful response. Those videos are great and super educating! I’ve forwarded them to my family members too as often it can be very difficult to explain to those around you just what you’re going through. Though, I’m fortunate that they’re super supportive and keen to help me get to the bottom of the problem.

Interesting how you mentioned soaps and shower gels irritating too! Is it better to rinse off the sweat straight after exercising just with some cool water? Additionally, is minimising soap in those areas during showering helpful too? Or is there a particular soap that may be helpful!

I have some more questions about dapsone too, if you don’t mind me asking. As mentioned in my response to Trents, I take prednisolone for when I am glutened or when my symptoms become too unbearable. With oral steroids it’s usually a 4 week dose as I have to reduce my dose to slowly come off them. How long can you take dapsone for? Can it impact your immune system in the same way as oral steroids (I have to be super careful I don’t pick up any infections whilst on my steroids as my immune system is compromised.)

Yes, I’m from South Wales in the UK. Though my grandfather is Irish, explaining my surname (very well spotted!)

We've got plenty Tiernan's over here across the Irish Sea!

I think anything will irritate an open wound in the skin. My dermatologist suggested Aveno moisturiser and E45 Emollient shower cream when she thought it was Eczema. I'm sure they will help during a dermatitis herpetiformis outbreak, or be the least irritating. Rinsing off after exercise should give you some relief.

Dapsone is an antibiotic and it does reduce the skin inflammation associated with dermatitis herpetiformis blisters as well as eliminating the itch. I don't think it affects the immune system like oral steroids though. My GP said it can affect the bone marrow ... I believe in terms of red blood cell production. It causes them to break apart prematurely. They measure the reticulocyte count (immature red blood cells) in your blood while on Dapsone to see it's effects. People with a G6PD deficiency are more susceptible to Dapsone side effects. Here's a leaflet from the British Association of Dermatologists explaining Dapsone in more detail ... https://www.skinhealthinfo.org.uk/condition/dapsone/

Your dermaotolgist would need to determine how long to be on Dapsone. I guess if the antibodies in the skin are reduced over time with a strict gluten-free diet, then the need for Dapsone is less likely when glutened. So, Knitty Kitty's advice on Niacin and all things dermatitis herpetiformis related is spot on. 

Have you had the skin biopsy yet?