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Personal Story: Gluten Rash/Dermatitis Herpetiformis

I thought I would write a short personal piece about something which happened in my own life and one of the key reasons I have come to eat the way I eat. This had a major contribution to me becoming even more dialled in to the importance of diet for overall health and well being. Also, hopefully this post may be helpful for anyone else struggling with a similar condition should they happen to stumble upon it.

In 2015 I was 25 years old and living in Bristol completing a Master's degree in Nutrition, Physical Activity and Public Health (somewhat ironically as you will see). It was from around this time, and for around 4 years until I finally figured it out, that I was getting very intense burning rashes on my hands. These rashes would be in oddly specific places on the back of my hands and between my fingers. The rashes were itchy, when I say itchy I mean torturously itchy - so itchy that I used to run them under burning hot water to feel what was a euphoric sensation, like the best itch scratch of all time! I did this frequently - obviously this wasn't good for my skin. I also went through the whole range of skin products "scientifically formulated" to treat eczema and psoriasis and "heal" my skin - yeah sure. Needless to say none of them worked. Also at this time I was having frequent diarrhoea as well as four or five episodes a year of tonsillitis. Not a pretty picture. Now, for some reason, despite thinking I was pretty switched on with nutrition at the time (I was doing a Master's degree after all!), I didn't really piece all of this together in to a picture of poor health. And of course if I ever went to a "medical professional" I would be given creams for my hand, antibiotics for tonsillitis (even if it was viral - go figure) and pills for diarrhoea - medications medications medications. 

My hands during one of the regular flare ups

The skin problem was by far the most troubling for me - it was so intense and in such a visible place that I just couldn't forget it. It wasn't something that was constant - I had severe flare ups every few weeks or so and then it seemed to settle only to come back again in the same place. So having tried the creams route and tried different soaps and avoiding other things I thought may be triggering it, I decided to try and get to the bottom of it once and for all. I trawled the internet, forums, journals, health websites, until I found a photo of a condition and description of symptoms that matched mine. I had assumed it was just eczema, psoriasis or contact dermatitis prior to this. It was in 2019 that I finally came across something that I had never heard of before, a condition which seemed to match my symptoms and a photo of the condition which matched too - the condition is called Dermatitis Herpetiformis.

Dermatitis Herpetiformis (DH), more colloquially called Gluten Rash, is a cutaneous-intestinal disorder caused by gluten hypersensitivity. Coeliac Disease (CD) is the gastro-intestinal version of the same hypersensitivity. DH sufferers generally do not manifest the gastro symptoms present in those with CD. Interestingly it is most common in Scandinavia and the UK. It is more prevalent in men than women in a ratio of 3:2, and mostly affects young adults between 15-40. 

Gluten is a family of proteins containing two peptides - gliadins and glutenins. It is the gliadins which are responsible for the reactions in susceptible individuals. DH is not triggered by topical or intradermal contact with gluten, symptoms are only triggered by consumption of gluten containing products as the development of the disease requires intestinal exposure. The pathophysiology of the symptoms has been described as follows: 

Ingestion of gluten leads to an inflammatory cascade in individuals with gluten hypersensitivity. This is caused by the fact that alpha-gliadins (a component of gluten) have high immunogenic potential in these individuals - meaning they trigger an immune system response. During the inflammatory process auto-antibodies are formulated by the immune system which work against the alpha-gliadins. IgA - an element of the immune system which recognises potential threats - begins to recognise the bodies own tissue transglutaminase as a threat and therefore the autoantibodies (the ones created earlier in response to the gluten gliadins) start attacking the transglutaminase which resides within the epidermis. Extra cellular matrix degrading enzymes are produced by neutrophils as part of the immune response and this culminates in the production of vesicobullous lesions - which are the incredibly itchy lesions you can see in the photo above!

Had I stumbled upon the reason for my rashes and other symptoms I had struggled with for the last few years? 

My diet at the time was, looking back, surprisingly high in gluten (similar to most people). I used to eat wholemeal pitta breads, pasta, occasionally cereals such as bran flakes, and sourdough bread regularly. Not only this but I also would opt for Guinness or beer if I was drinking alcohol. Also, because I wasn't avoiding gluten I would eat things without being at all conscious of whether it could be in there - and once you start looking you become aware that gluten containing grains (wheat, barley, rye, malt) are in A LOT of things - cereal bars, soy sauce, Worcestershire sauce, marmite, chocolates (eg lindt), cereals that aren't primarily wheat (eg Rice Krispies), the list goes on. The majority of these things contain either wheat or barley - both of which are gluten containing grains. So in summary I was eating gluten knowingly and unknowingly without regard. Could this be the cause of my skin condition, could it be DH? I decided to try and find out.

So in February 2019 I stopped eating Gluten - at first I cut it out in the obvious things, stopping eating bread, pasta, cereals, stopped drinking Guinness and beers when out. Then I became more and more aware of the amount of things it is sneaked into and was more careful. On first starting cutting out the main items I saw an improvement in the skin symptoms within a few weeks - my skin was improving. But, as I said this condition would flare up and settle from time to time so was this a false dawn? I continued with the plan, cutting gluten altogether. It had been months and my skin stayed better, the rash wasn't coming back, this had been the first time in as long as I could remember that my hands weren't on fire every few weeks. This improvement continued until my hands were completely clear, my tonsillitis episodes also stopped and I stopped having regular diarrhoea. Since starting avoiding eating gluten at the start of 2019 I have had a couple of episodes of the hand rashes and I put these down to unknowingly consuming gluten - possibly in a restaurant or in a product which had been cross contaminated in a factory. But I can safely say that Dermatitis Herpetiformis was definitely the cause of my problems and when my diet is absolutely gluten-free - i.e I don't eat out or eat anything which could have been cross contaminated - I get no skin rashes whatsoever and no other symptoms.

I have never had this self-diagnosis confirmed by testing - mostly as this would require me to eat gluten and therefore trigger the rash and associated symptoms I already know that it causes. I am already certain that gluten is the trigger and as such feel no need to have this officially confirmed. I also don't particularly miss any gluten containing foods and having read and heard much more information regarding gluten and grains generally, I personally feel they are not something humans should be consuming regularly anyway if they are seeking to thrive and avoid chronic disease and nutrient deficiencies - I will surely write about grains and gluten further in future blog posts so will go into detail regarding this at some other point. With regards to consumption of grains I personally only eat white rice and this is purely for the carbohydrate energy after gym sessions.  

Anyway, long story short I had suffered with intense burning skin rashes, regular tonsillitis and diarrhoea episodes, through much research I finally discovered Dermatitis Herpetiformis and I ultimately resolved all of my symptoms by cutting out gluten completely from my diet. I hope that this story and information may possibly help someone else come to the realisation that their painfully intense skin rashes and other symptoms are being caused by the gluten containing foods that they are eating. More broadly hopefully it may also help others not necessarily suffering with the same exact symptoms to consider their diet as a source of any symptoms they may be having, and also to consider the major impact what we eat has on ours bodies and the way in which we function from head to toe.






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