Sorry for the really gross photo, but as they say a picture is worth a thousand words!
I get a lot of questions about this...just what is it and why don't all Celiac's get it? Well, whats to say why all Lupus patients don't get Rheumatoid Arthritis or Photo sensitivity? Its all in the genes really. Everyone is made differently so everyone reacts differently. Over the years I have begun to better understand this disease.
Personally I have several autoimmune issues: Lupus, RA, DH and photosensitivity... as well as a vitamin D difficiency, which I recently learned is quite common in those with DH. "Once considered celiac disease of the skin, is known to occur in a number of different autoimmune disorders, including Graves’ disease, Hashimoto’s thyroiditis, Sjogren’s syndrome, Lupus and rheumatoid arthritis."
So what IS Dermatitis herpetiformis (DH)? It is an autoimmune disorder characterized by chronic, intensely pruritic (itchy) symmetric groups of vesicles, papules, and wheals (hives), that may occur on the elbows, knees, arms, legs, shoulders, scalp, buttocks, neck, and face. DH, which is also known as Duhrings’s disease, Brocq-During disease, and dermatitis multiformis, usually occurs in people with celiac disease and well as milder forms of gluten sensitivity, and less often, in people with autoimmune thyroid disorders.
DH has also been reported to occur in people with vitiligo, type I diabetes, Sjogren’s syndrome, and dermatomyositis. It starts to make itself known in the late teens and early twenties, or in the third or fourth decades of life, although it can show up in the early teens and then remiss until the early forties. It affects people of all ages, but males are affected twice as often as females, and it occurs more often in Caucians than in those of Asian or African descent.
DH causes small blisters, discrete papules (bumps, pimples), itchy smooth lesions resembling hives, and waxy lesions. Blisters and papules frequently appear on the face and and may cause intense itching. Clinical signs are often highly variable ranging from groups of papulovesicles with excoriations or eczema-like lesions to minimal variants of discrete redness with small water blisters or areas of small purpura (purple bruise-like lesions mistaken for bruises or passed off as being "thin skinned").
Untreated, the outwardly symptoms of DH tend to come and go and with a diet of gluten, symptoms will continually persist. When going on the gluten free diet it can take a few weeks to several years for symptoms to clear up with longer periods required for patients who have had symptoms for a long time before restricting gluten. In my case, I am still working through it five years after going gluten free, however my symptoms showed up when I was 30 years ago as a teenager, then became dormant for twenty years before reappearing after an overly stressful period in my life.
Just a reminder that this affects the SKIN and wherever you have skin you can have a lesion. ANYWHERE.....get it? I'm talking about inside the ears, anus, vagina, mouth, on the tongue, you name it it can show up - and no, there is not rhyme or reason where or how much more one person is affected than the other. Note: while it is possible to have oral lesions occurring inside the mouth, along the gum lines, etc, these lesions may also be caused by the apthous ulcers (oral blisters) that frequently occur in people with celiac disease.
Environmental triggers include gluten, found in wheat, rye, and barley, and other grains that are contaminated with wheat during harvest (like oats...however this is still a medical debate going as to whether it is the oat proteins that affect us as well). Gluten is also found in hydrolyzed vegetable protein, artificial colorings, malts, malt ales, hydrolyzed plant protein, monosodium glutamate (MSM), preservatives, modified food starches, vegetable gum, beer, and some vinegars. Also, iodide is not your friend. Found in iodized salt and foods high in iodine and halide these are frequent causes of flares.
In order to determine whether or not this is what you have a biopsy of the lesions must be done by a dermatologist. If you have DH it will show dermal papillary microsabscesses of neutrophilic white blood cells with deposits of immunoglobulin A (IgA) and complement at the junction of the dermal and epidermal layers of the skin.
To treat DH the antibiotics Dapsone and Sulfapyridine are prescribed**, and a lifelong adherence to the gluten free diet is required. Please note that while Dapsone effectively reduces the rash within several days, long-term use is NOT recommended as it will cause severe anemia and in some instances kindney failure (associated with years of use). However, a gluten-free diet removes the need for continued use so the sooner you learn about this lifestyle and adhere to it the better your life will be.
Dapsone is only used to initially reduce inflammation and symptoms until they are controlled, often resolving after 3 to 18 months of a gluten-free diet. However, symptoms will return over time if gluten is reintroduced to the body. In autoimmune thyroid disease, reduction of thyroid antibodies offers benefits. Recent studies have shown the effectiveness of selenium in reducing thyroid peroxidase (TPO) antibody titers.
As a finally note, while DH usually occurs for life once it appears, permanent remission has been reported to occur in 10-20 percent of patients, but only after long-term adherence to a gluten-free diet.
**While my dermatologist insisted on giving me these drugs, for personal reasons I refused. I didn't have the intense itching that others have had and felt that I would start by by going on the gluten free diet. I was warned that it could take several months before feeling relief, however after 3 weeks my skin began to clear up and my itching had stopped all together. Now I am told this is not the "norm" so I am very grateful, but to this day I still have problems with "flareups" due to cross contamination.