Dermatitis Herpetiformis: Learn why some react to topical gluten and others do not

Image: Dr. Vikki Petersen
Dr. Vikki Petersen, DC, CCN

Can Your Skin Have Celiac Disease?

One of my pet peeves is the way skin conditions are treated in this country. I cannot state what happens elsewhere, although I fear it’s similar, but here in the US, dermatologists (skin doctors) tend to treat skin the way one would a stain on one’s shirt. In other words, they direct all their attention to trying to make it disappear, the rash, the dryness, the burning, etc.

Why is that an error? The skin is an organ. In fact, it’s our largest organ. As an organ, it is most closely related to the digestive tract, another very large and very important organ.

When we discuss celiac disease and gluten sensitivity, we often mention a leaky gut, a condition whereby the integrity and health of the small intestine is compromised. Interestingly, the skin can also be ‘leaky’ or too permeable. This problem actually explains why some people react to applying gluten topically while others do not – it depends on whether or not they have leaky skin.

There is a classic skin condition associated with gluten called dermatitis herpetiformis or DH. Many call it the celiac disease of the skin. Both are autoimmune diseases and both are caused by a reaction to gluten, so they do share much in common.

DH appears as blisters in symmetrical areas of the body, including elbows, knees, buttocks, lower back and back of the head.  The blisters are usually inflamed and red with severe burning and itching.  The burning and itching can be present before a rash ever appears. I had one patient describe it as ‘lit kerosene beneath his skin’.

An immune substance called IgA, that is produced in the lining of the gut, is found as deposits in the skin of a DH patient. It is believed that gluten in the diet combines with IgA and together they enter the blood stream where they clog up small blood vessels in the skin. This manifestation creates an additional immune response by white blood cells and the result is the rash of DH.

Despite DH’s relationship to celiac disease, only 20% of patients have any digestive symptoms. However, villous atrophy, the hallmark destruction of the small intestine consistent with celiac disease, is present 80% of the time. This ‘silent’ destruction likely contributes to the very few who are correctly diagnosed with DH. Instead they are given creams, lotions and steroids, all focusing on the rash itself instead of addressing the root cause of the condition – in this case dietary gluten consumption.

We know that DH exists and we know that it is the skin’s expression of the disease celiac. One would think that having that knowledge would be enough to appreciate that gluten can causes manifestations in areas beyond the digestive tract. But unfortunately we continue to hear of case after case whereby the patient had to diagnose themselves with celiac disease or gluten sensitivity when their doctor refused to test them because they had no or minimal digestive complaints.

The incidence of DH is thought to be 10 in 100,000 typically beginning in the 2nd to 4th decade of life. It is two times more common in men and more so in Caucasians of northern European descent. DH affects about 15%-25% of patients with celiac disease.

In our practice we like to say that the skin is a reflection of gut health. Whether the condition is acne, eczema, dry skin, psoriasis or DH, when a skin condition is present we look to the gut. I tried everything, from cleanser to oral contraceptives and homeopathy. The result was 0. After another tantrum in front of a mirror, I went to another dermatologist. The doctor examined me and found out what methods I had tried to solve the problem, and then he said that I would take Accutane. I told him about my fears, he laughed and said that I should spend less time surfing the Internet. Researchers of DH agree with us. In fact they suggest that the tTG enzyme that is classically measured in the blood for celiac disease has a ‘skin derived’ version that indicates the presence of DH. They feel the underlying mechanism has to do with molecular mimicry between the gut’s tTG and the skin’s. By the way, Cyrex Labs is soon to release this particular skin-related tTG as a blood test for DH.

Treatment for DH is twofold:

1. Dapsone – a drug given for symptomatic relief that has a dangerous side effect of creating hemolytic anemia, and

2. Gluten-free diet.

What’s the success rate? Full remission is only seen in 10-20% of patients. Not very good, I think you’ll agree.

Why does this occur? The patient and their doctor tend to focus solely on the appearance of the skin, rather than the state of health of the small intestine and body as a whole. When the skin “looks” better, patients cheat on their diet. It sounds ill advised and it is, especially considering that DH increases one’s risk of developing other autoimmune disease (thyroid, diabetes, etc) plus small intestinal cancer.

But is it the patient’s fault? No, in my opinion it’s their doctor’s. Although with wonderful blogs such as this one and other good information on the internet, I guess we can hold patients somewhat accountable as well. However, in the main, I think the brunt of the responsibility lies with the doctors who do not know themselves enough about DH and misdiagnose it as another condition or correctly diagnose it but then put no emphasis on healing the body as a whole.

If you or someone you know has a skin condition, regardless of whether it turns out to be DH, know this: The skin reflects the health of the digestive tract and with poor digestive health present, optimal health will be absent. Find a clinician who has the correct viewpoint of the body and who understands that skin conditions need to be treated by embracing the whole body , not topically.

Our destination clinic treats patients from across the country and internationally. If your health is not the way you desire it to be, consider calling us for a free health analysis – 408-733-0400. We are here to help.

To your good health,

Dr Vikki Petersen, DC, CCN
Founder of HealthNOW Medical Center
Co-author of “The Gluten Effect”
Author of the e-Book: “Gluten Intolerance – What you don’t know may be killing you!”

References:

J Eur Acad Dermatol Venereol. 2009 Jun;23(6):633-8. Epub 2009 Mar 10.
“Guidelines for the diagnosis and treatment of dermatitis herpetiformis.”

World J Gastroenterol  2007 April 14;13(14): 2138-2139
“Celiac disease and skin: Psoriasis association”

J Am Acad Dermatol. 2009 Jul;61(1):39-43.
“Autoantibodies against epidermal transglutaminase are sensitive dx marker in pts w/ DH on a normal or g-free diet.”

Clin Gastroenterol Hepatol. 2005 Apr;3(4):335-41.
“Permeability, zonulin production & enteropathy in DH.”

4 Replies to “Dermatitis Herpetiformis: Learn why some react to topical gluten and others do not”

  1. I was getting horrible lieson’s (sp?) on the back of my neck started as a little bump and when opened become horribly infected and I thought it was staph and then I got them on my face (they fluid in them was clear like a blister again – the infections became horrible and long lasting – doctor’s no help – Derm asked me if I was OCD as if I would pick my skin and make it look like that – during that time on my own I treated it with antibiotics 4 times in a few months period of time – got a bad one on my leg and doctor game me really high power antibiotic that really nothing I seriously thought it might be MRSA. I got checked for celiac via a genetic blood test which was negative as I could load for biopsy of intestine due to severe reaction to gluten. What I need to know can you get DH if you are not celiac and just gluten sensitive in a big way. I know I have leaky gut and have been gluten free – bought pizza that was supposed to be gluten free and the next day had deep blister full of fluid that when it erupted it was so bad it looked lice my nose was rotting off. My skin is better without gluten. Am wondering if genetic test is negative can you still have celiac and can you have DH without being celiac. It’s all so very confusing the the doctor’s are absolutely useless – I can’t afford further testing as am on Disability and they won’t pay for a alternative doctor. Help

  2. It’s so miserable, trying to read tiny labels, and not knowing what all the names are for gluten, wheat, and even ingredients that are derivatives of wheat, like vitamin E. I’ve wasted a lot of money searching and trying products. I’m super sensitive to topical exposure, and throw many things away. I was just informed by a caring person at Bath and Body Works, that many times soy and wheat are rotated as crops, so the soy becomes contaminated in the field. I knew sometimes I was so careful, and got the itching or blisters anyway. It’s all very frustrating. I’m told to ask my doctor, and because of trial and error and groups like this, he said I know more than he does. It’s confusing to them too. The thing is, if you’re the one with the reaction, you have to find out for yourself and will do anything to prevent that unbelievably horrid attack. And, I guess I need chemistry and agricultural degrees to catch it all. Thank you for all you post.

  3. I have been struggling with skin breakout for the past 7 years and got worse when I moved to the USA. Got tired of going to different dermatologist and trying all kinds of medical treatment with no positive results. From reading thru the internet decided to go gluten free and have so for the past 2 years and my skin allergy is gone and will not eat gluten ever again. I have not been diagnosed by a doctor with celiac desease but truely belive this was my problem. The reason it got worse when moving to the USA is because everything here is made with enriched flour and for this reason my skin allergy broke up pretty bad until I realized it was gluten. Your article addresses this issue and my other symptoms hace also disappeared such as:
    Headackes
    cramps when doing sports
    numbness of the extremedies
    better endurance when playing sports ( tennis)
    skin breakout

  4. This was so informative! My husband, who has type1 diabetes has had red inflamed patches show up at differernt places and they come for a few days then disappear. None of his docters seem to have a clue what it is. This article opened our eyes to a different reason why. Thank you

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