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Dermatitis Herpetiformis ~ When Celiac Disease Gets under Your Skin

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Extreme itching, burning blisters, and a painful chronic rash? Not the typical symptoms you expect from a disease affecting the small intestine! The reality is, for up to 25% of diagnosed Celiac patients, those excruciating hallmark symptoms of the skin condition Dermatitis Herpetiformis are the only manifestation of CD. Dermatitis herpetiformis (DH) is a chronic skin condition that causes small, liquid-filled blisters on body parts like the knees, elbows, hands, back, buttocks, or scalp. Other areas of the body can be affected, but these are the most common sites where the rash appears. Outbreaks of the rash and blisters are very symmetrical. In other words, if the rash appears on one side of the body, it will also appear in similar fashion and size on the other side (both knees, both elbows, etc.). A stinging or burning sensation in the area where the blisters will eventually erupt typically precedes the outward signs in many individuals. For someone who has DH, there is a near 100% chance that individual will test positive for CD. In fact, DH is a form of CD. At first, it may not make sense that a skin condition is linked to a disease that attacks the small intestine; however, a look at our immune system provides some insight into how this can be…

What Causes Dermatitis Herpetiformis? With an autoimmune disease, like CD, autoimmune thyroid disease or Type 1 diabetes, the body mistakenly attacks its own tissue in response to a substance recognized as harmful. The human immune system essentially goes awry and turns on itself. In CD, it is the lining of the small intestine that is ravaged in response to the protein gluten. DH is also an autoimmune disorder. With DH, as the the body’s immune system reacts to gluten, the skin is attacked.

As I mentioned, up to one-fourth of individuals with CD have DH. While some individuals with DH also have damage to the villi (fingerlike projections) of the small intestine that is a hallmark of CD, research indicates most do not.

Let’s take a closer look at our immune system to get a basic idea of what happens…When our bodies recognize a substance with which it comes into contact (like a food we eat) as harmful, its number number one goal becomes ridding the body of the foreign invader. That means the immune system gets involved. When we’re talking about the immune system, we’re talking about antibodies… {antibodies ~large, Y-shaped proteins used by the immune system to identify foreign invaders inside the body.}

In CD and DH, the special antibody involved is IgA (immunoglobulin A).  IgA hangs out in mucous membranes (linings) body-wide in areas like the nose, throat, lungs, and gastrointestinal tract (or gut). Think of it as an “on call” security guard of sorts, ready to jump into action and attack if it detects an “offender” (like gluten).

When a food containing gluten is eaten, that food, of course, reaches the gut. Remember, that’s one of the places IgA hangs out. IgA recognizes the gluten as a foreign (and unwanted!) offender and binds to it.

In the case of CD, the small intestine lining suffers in the attack.  IgA itself does not directly attack the gut. Instead, the immune activity at the cellular level in the small intestine lining results in the damage commonly associated with CD. The same type gluten attack occurs in DH, but instead of the gut suffering the battle fallout it is the skin. Circulating IgA antibodies travel the bloodstream and settle in the papillary dermis of the skin… That’s the area just under the part of our skin that we see. This is what leads to the severe and painful outbreak known as DH.

Now that we have a general idea of what DH is and how it leads the immune system to attack the skin, let’s look at diagnosis and treatments available for those with DH. Diagnosis of Dermatitis Herpetiformis – The first step in diagnosis of DH is typically a blood test, just like with CD. If higher than normal levels of certain antibodies are present in the blood, a biopsy may be ordered. {biopsy ~ a small sample of tissue is taken from the body then is closely examined for abnormalities.} Just as a biopsy of the small intestine is used to diagnose CD (it is currently the only definitive method of diagnosis for CD), a skin biopsy can be used to diagnose DH. Skin biopsy reveals an accumulation of IgA antibodies just beneath the skin’s surface. It is there that IgA antibodies cross-react with an enzyme in the skin, epidermal transglutaminase (eTG). The combination of IgA and eTG are what causes the painful lesions of DH.

If DH is confirmed, some physicians will also order an intestinal biopsy to determine small intestine damage from CD; however, it is generally accepted that a positive blood test and positive skin biopsy for DH is enough for a diagnosis of CD, making a small intestine biopsy unnecessary. Of course, diagnosis is the first step to controlling this painful (sometimes debilitating) skin condition. As is often the case, we can turn to our diet for answers.

Treatment of Dermatitis Herpetiformis: Just like CD, the best plan of action for treatment of DH is a strict gluten free diet. In addition, the antibiotic, Dapsone, is used as a more immediate way to relieve symptoms of DH. While Dapsone is effective in alleviating the extreme discomfort associated with DH, this drug treatment is not without drawbacks. Over time, Dapsone can damage red blood cells and lead to hemolytic anemia. Fatigue, muscle weakness, and a general feeling of low energy are a few of the resulting symptoms. {hemolytic anemia ~ a type of anemia resulting from the abnormal destruction or breakdown of red blood cells; anemia is an overall reduction of the number of red blood cells or a reduced quality of hemoglobin, the iron-containing protein responsible for carrying oxygen in the blood.} On the other hand, research shows DH patients who adopt a gluten free diet and are diligent about it are able to be completely Dapsone-free in approximately two years. This makes it especially important for DH patients to go on and adhere to a gluten free diet. While 2 years on a potentially harmful medicine like Dapsone may seem like a long time, it is a short time considering DH is a life-long, chronic disease with no cure. Even more evidence in favor of a gluten free diet are studies showing DH patients who do not strictly adhere to a gluten free diet have a significant risk of intestinal cancer compared to those who manage their DH by living gluten free.

From naturally gluten free foods like lean proteins (animal or plant based) and fresh produce to decadent recreations of some of our favorite sweet treats, there’s something for everyone on a gluten-free diet. Be sure to visit the Recipe Index on my website, as well as the one here, for delicious dishes you can enjoy today!

xo,

About Gigi Stewart

After more than 25 years of living with unexplained chronic pain and a frightening array of misdiagnoses ranging from lupus to leukemia, I took my health into my own hands by seeking real, fact-based answers to heal my body naturally. Through my academic research, scientific studies and my personal experiences, I gained a unique understanding of how properly managing diet directly impacts our overall health and wellness. It is my passion to share this information with you because I know many of you are facing health challenges similar to those I overcame through proper diet and nutrition. My goal is to support your journey to optimal health with real answers, advice and tips that work.

View all posts by Gigi Stewart →

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  • Dawn Robertson: The only tropical relief I have found is from Biofreeze. Every few hours I spray my itchy splotchy rash and I get a few hours of peace. Icy Hot or other products will menthol may work too. View Post
  • Peggy Schulz: Hello, I am trying to find a doctor or dermatologist in Oregon (preferably Medford area) that specializes in DH/Celiac. After going to 5 docs over a couple years, all think I have eczema and even athlete foot or food allergy, spent over $3000 out of pocket for allergy tests etc., I figured out what I have via google! Oh did I tell you I always told my doctors I have celiac. And I always said I have a feeling it an internal issue, not an allergy. And always told them the itch is not normal, it itches to the bone! Not one ever mentioned DH! Apparently I am getting cross contamination, so now staying home for every meal, not eating out, even at friends homes. I would sure like a doctor who 'get's it'! Thank you for this site! View Post
  • Peggy Schulz: Hello, I am trying to find a doctor or dermatologist in Oregon (preferably Medford area) that specializes in DH/Celiac. After going to 5 docs over a couple years, all think I have eczema and even athlete foot or food allergy, spent over $3000 out of pocket for allergy tests etc., I figured out what I have via google! Oh did I tell you I always told my doctors I have celiac. And I always said I have a feeling it an internal issue, not an allergy. And always told them the itch is not normal, it itches to the bone! Not one ever mentioned DH! Apparently I am getting cross contamination, so now staying home for every meal, not eating out, even at friends homes. I would sure like a doctor who 'get's it'! Thank you for this site! View Post