Being celiac can bring on more than just digestive issues, and for those that have skin issues like Dermatitis Herpetiformis, there is hope!
Celiac disease is often associated with a variety of symptoms that differ from person to person. Dermatitis Herpetiformis, aka gluten rash, just happens to be one of those that I have been "blessed" with (on top of internal reactions). I am not going to say I cured my Dermatitis Herpetiformis, only because there will always be triggers that can cause a flare-up. This is part of my celiac diagnosis, and like that, it is all about managing the condition and working to live as normally as I can. So this is how I learned to control my Dermatitis Herpetiformis dramatically.
What is Dermatitis Herpetiformis?
Dermatitis Herpetiformis, also known as DH, is a condition commonly associated with celiac disease and gluten sensitivities. This rash is very persistent and can come and go in flareups. The rash commonly occurs on the elbows, knees, neck, back, shoulders, scalp, and sometimes face. The skin can become inflamed, red, and itchy before the rash starts to get worse. Often the rash is misdiagnosed as acne or eczema, as the rash can develop similar traits. Dermatitis Herpetiformis, DH affects on average 10%-15% percent of people who have celiac disease.
How is Dermatitis Herpetiformis Diagnosed?
Dermatitis Herpetiformis is diagnosed through a skin biopsy and blood tests. Commonly the doctor will perform what is called a "punch biopsy" to remove a sample of the skin. The sample will then be tested for the presence of Immunoglobulin A (IgA). The positive presence of this granular patter is almost always positive for the diagnosis of Dermatitis Herpetiformis.
This test and blood tests can confirm the presence of antibodies of people with celiac. This includes the anti-endomysial and anti-tissue transglutaminase antibodies that can help diagnose celiac disease individuals without the need for the intestinal biopsy that is often performed. This is also because many people who have both celiac and DH often do not have the same internal reactions as someone with celiac, which does not have Dermatitis Herpetiformis.
When this was done, I honestly thought it would hurt really bad, but in all honesty, it didn't, and the tiny stitch didn't leave much of a mark.
How is Dermatitis Herpetiformis Normally Treated?
Because of the link between DH and celiac, the main treatment for it is sticking to a gluten-free diet. For most people, this helps to reduce the reaction of the Dermatitis Herpetiformis dramatically. For others, more intervention is needed. Oftentimes, the antibiotic Dapsone is prescribed. This is a powerful medication that, with prolonged use, can have its own set of complications, including liver conditions.
Because of the side effects, this course of treatment is not something that I personally was interested in in the long term. I knew there had to be a better way.
How did I Control My Dermatitis Herpetiformis Naturally?
Dermatitis Herpetiformis is something that really started to flare up right before I was diagnosed with celiac. For YEARS I would find something that worked for a while, and then one thing or another, it would flare back up. I was already on a strict gluten-free diet. In fact, I limited my dairy intake and refined sugar intake, all in hopes of determining the trigger for my DH. I also became an expert at covering up my DH (which, of course, also worsened over time).
What I started to notice were two things. One my DH flared up more in colder weather or when my skin became irritated or overly dry. Secondly, I saw that making sure that everything I put on my skin was not only gluten-free but grain-free really did matter. Since I learned I react to gluten-free grains like rice and corn in my intestines, I started to eliminate those things from going on my skin as well. Figuring out these things became a game-changer.
Diet became a massive thing for me. When I figured out that I was reacting to gluten-free grains, I had to take them all out of my diet. This not only eliminated a lot of my unexplained digestive issues but also helped with my Dermatitis Herpetiformis, some as well. I knew I was on the right track, but I had to do more.
So what did I do? It all started with research into different things that I was using to maintain my skin and what they had in them. Figuring out ingredients in items led me to a few products that I decided to try instead of what I had been using.
I was told that the Kate Somerville collection was a good choice (by a dermatologist) because it balanced the line between everyday products and medicine that could help combat the issues that my Dermatitis Herpetiformis was causing. It was not until I looked at the ingredients and found things in the products that upset my intestines; therefore, they must also be reacting with my skin making the DH worse instead of getting better.
So what lead me to using what did work?
In looking at ingredients, I started to eliminate ingredients that flared any issues or could potentially cause an issue with my stomach. This included all ingredients with a wheat base or ingredient. While many people will say that celiacs don't need to have their beauty products be gluten-free, this wasn't the case for myself and controlling my DH.
What do I do on a daily dasis to Control my DH?
I use a few main things every day that my face personally likes to help control my DH. I still have flare-ups from time to time, but not nearly as often as I did before. Now that I have it under control, this is what I've been doing with my skincare routine.
I will note here that I have in the past used Beautycounter products to help with my DH. However, many of their formulas and business practices have changed over the last year or so, and this is no longer a company I support.
Since then, I have had quite a bit of luck controlling my skin with many of the Juice Beauty products. Their entire line is completely gluten-free, which means that I don't have to pick and choose which things to try.
- Juice Beauty Cleansing Milk - I use this in the mornings and night to wash my face.
- Juice Beauty Nutrient Moisturizer - I use this as a daily moisturizer.
- Juice Beauty Mositurizing Mist - I like to use this a lot more on days when the weather is drying my skin or I just want to help keep more moisture in my face.
- Bourdoux Baby Diaper Rash Cream (night) - This has really been helpful during flares. I've been using it at night, almost like an intense overnight treatment, as needed and it seems to be helping keep flares to a minimum.
The Changes in My Skin!
I wish I had taken more from before, but let's be honest. I was more concerned with hiding it more often than not, and so in most photos, I always had a ton of makeup on (which, of course, was not helping with the DH with their ingredients either). Let's say my skin looked more like a preteen boy, always broken out and bumpy with scaling dry spots that would like to bleed at the most inopportune time. In my thirties with preteen girls who notice everything, I knew there had to be something I could do. Here is a picture of my skin when it was starting to heal finally.
Most days now, I wash my face, use the light moisturizer in the morning, and then apply a little light powder to help with the redness that remains and whatever makeup I am wearing that day. I no longer go through many heavier foundations or cover creams, trying to hide my entire face because of the DH. Let me say that alone has been my sanity saver.
Controlled Not Cured
Of course, I don't think I cured my Dermatitis Herpetiformis because, just like with celiac, there really is no cure. Only in the way I have been able to control my celiac symptoms, I just found a way to control my Dermatitis Herpetiformis severely. Between changing my diet to eliminate the additional irritants and finding products that do the same while working to calm my skin, it has really helped. It's been a few months now that I have been using this full routine (tweaking it here and there), and my skin is so much different than it used to be. So I will continue to use this routine, and I hope to keep seeing additional skin improvements overall.
Still want to know more?
If you want to know more about my journey with Dermatitis Herpetiformis, please feel free to ask me anything. I used this on my face, but I know a few people who have used this routine in similar DH (and eczema) on other parts of their body and have also seen a dramatic difference. I know it's something a lot of us suffer from, and I hope that my journey can help you as well!
Amy says
Hi I wonder if you have heard that iodine is a trigger for worsening DH. It can be in higher concentrations in some fish, dairy, eggs, liver, kelp, and some cough medicine with expectorants. Don't get me wrong, everyone needs the recommended daily amount of iodine even celiac patients for proper thyroid function, but if you are consuming more than the daily recommended amount that could be a hidden trigger when you're following a strict gluten free diet and still experiencing flare ups. Hope that info can help someone!
Barbara Pamp says
I think the DH triggers may be different for each of us, but we're all on the celiac/DH journey. Thank you for the diaper cream suggestion. I am ordering that today. I am thankful I can still eat rice and millet, but corn fires my DH right up. Once I've eaten corn flour or corn starch (because I didn't carefully check the ingredients on something GF), I am definitely going flare my DH. After I'm in a flare, any little bit of corn that's hidden in ingredients - like dextrose, maltodextrin, white vinegar, etc. - will send it soaring. I've never had DH on my face, only arms, back, legs, stomach, and I feel for you. I use salt baths (Dead Sea the best) and calendula creams to handle the itch, and absolutely no corn or gluten. That means I mostly have to cook everything myself, even mayonnaise - since corn is hidden in everything - until I get it under control. I was not diagnosed with celiac until my late 50s, so I had celiac all my life without the docs even knowing what that was. I was the failure-to-thrive kid. I had stomach pain, diarrhea, asthma, allergies, and skin issues like uncontrollable hives. That was my childhood. I am grateful I know what it is/was now. Sending you all my wishes for your good health!
Sara Vaughn says
Barbara, Thank you for your kind words. It's amazing how little ingredients can cause flares. I am glad you found your triggers and finally have an answer to your issues. Sending you good health.
Sara
Jayne says
Thanks for sharing, I’ve been driving myself mad blaming creams but after 6 months of the rash appearing, I’m now 99% sure it’s DH. I’ve taken pictures each time it appears and I can see a pattern to my trigger, its almost every time I eat out it with differing severity of a rash (always supposedly GF). I only got diagnosed with coeliac 12 months ago. Currently waiting to see dermatologist but no doubt won’t have the rash at that point. My face is currently sore, never been so bad, I’ll try the diaper cream. Thanks again.
Sara Vaughn says
I hope it helps. I also like to use a zinc-based face sunscreen on my face before I apply any makeup. I find it helps to add an extra barrier to keep my skin from reacting throughout the day. I use the bare republic brand for that.
Sara says
How old were you when diagnosed with celiac? With DH?
Did you have a skin biopsy for the DH?
Does your DH flare in the typical places for DH: elbows, knees, lower back, buttocks?
Sara Vaughn says
I was in my twenties when I was diagnosed. I did have a skin biopsy to confirm DH. Flares really depended on trigger sources.
APRIL MILHORNE says
I have this too:(
The redness around your eyes..is there little red dots mixed in with that sometimes? Like a random few , flat ones?
thanks!
Sara Vaughn says
April
I have had those spots during blad flare-ups.
Veronique says
Hi! I stumbled upon this by accident but maybe it was one those happy accident. I was reading my emails and there was one from the Canadian Celiac Association. It's funny really because that email was geared towards men and celiac disease. I clicked on a link where it said men are more likely to show sign of CD with dermatitis herpetiformis. Put it on Google and saw your picture... and I was like "This is exactly what my face looks like".
Sorry for writing a novel here but this is the first time for me that I see someone with the same kind of skin as I have and I have so many questions!
I have been dealing with physical pain for so long that it feels normal to me. I was diagnosed with Fibromyalgia in 2018 and after trying a bunch of different pill cocktails that didn't work and doing some research, I decided to go gluten free in 2019... Not thinking that perhaps I had Celiac disease. Before starting my GF diet, my skin was perfect, I'd get compliments all the time. Since I started eating a lot more products that are GF grains, my skin is always bumpy, red, dry, and it just feels like nothing is healing it and it's just getting worse. To be clear, I was never diagnosed with CD because I didn't want to eat gluten to do the gastroscopy.
I'm using Beautycounter and the cleansing balm seems to help, I put it on before I go to bed, I wake up and my skin looks decent but as soon as I eat something my face turns red. I'm a loss, my doctor mentioned acidic foods and sulfites and said to avoid them. I'd love to be able to chat more with you 🙂
Sara Vaughn says
Veronique
I'm so sorry you are having issues. Have you noticed a trend in the foods you eat when your face turns red? I know for myself inflammatory foods make mine worse at times. I would start a journal of the foods you eat and what symptoms show up, and how soon after you see them. Do that for a week or two and see if any trends pop out to you. Feel free to reach out to my email if you have more questions; I'd be happy to help in any way I can. grainfreetable@gmail.com
Sara
Amy says
Thank you for providing this resource and sharing your experience. The best info I've learned about celiac and dermatitis have been from people such as yourself.
Recently my dermal situation was triggered by the Moderna booster. Wondering if you've had any similar experiences?
Sending good thoughts. AL
Sara Vaughn says
Amy,
I have not had any personal experience like this but I find it interesting how everyone reacts to things differently. Celiac is one diagnosis that certainly isn't one size fits all for everyone.
MvK says
As far as I know I am not celiac and only recently have started having facial problems. I can eat grains but processed breads and pastries don't always go down well. My face looks very similar to your before picture. Dr mumbled something wit disinterest about Rosacea but it doesn't quite match that either. Were you officially diagnosed? How did you go about that? I don't have any other rash kn my body which I think would go with DH. Do you? Can DH only appear on the face? Your before picture is the first that sort of matches my issues.
Sara Vaughn says
I was officially diagnosed. It was part of my celiac diagnosis. I actually had to go through my gastroenterologist to get a referral for testing for DH, so they knew what they were looking for. DH is weird; it can show up in certain places or multiple places, which makes diagnosing hard. I would see about getting a referral to either a gastroenterologist or a dermatologist who can help if your doctor dismisses your concerns. Sadly, many doctors do not think diet can affect things when in reality, it can.
Krista Jones says
Hi! This is such great info - so glad I found it. After 15 years with Celiac, and strictly GF, I think DH is what I have been battling the last several months. I'm relieved to know that my favorite Beautycounter is still working for you. One question, though, what hair products have you used that don't irritate your skin? Thanks!
Sara Vaughn says
Krista
For my hair, I currently use Andalou products. I have very thick, naturally curly hair, and theirs seems to work well without weighting my hair down more.
Bethany says
Hi there, this is helpful as I think my niece has this. I think also my mom did too.
My question: you alluded to having some issues before you realized you had DH--did you always have a rash? or when it first started did you just have itchy skin, no rash? I'm asking bc I know I at least react to gluten--I get severely itchy skin (not to mention digestive issues). I am wondering if you were itchy for a while before you ever came out with a rash.
Andrea says
What kind or brand of diaper cream do you use?
Sara Vaughn says
I use the Boudreaux's Butt Paste.