Take a look at that name. It is utterly meaningless - herpe-like inflammation of the skin. It says nothing about cause or even real symptom, it's vaguely incorrect, and omits the actual raison d'etre, and provides only a smidgeon of information about the effect. It mocks. Henceforth, you will refer to it as Duhring's disease, as he wrote it up (if you will) in the 1884 AMA journal (since he couldn't put it on E2, naturally). It is closely related to celiac (or coealiac disease - it is not known why some individuals get one or the other.

So what is it already?

Dermatitis Herpetiformis (or DH as it is catchily called by dermatologists everywhere - or at least 66% of the ones I've used), is, in simplest terms, an allergy to gluten, a protein found in wheat, rye, oat, barley: nearly every traditional "bread-making" grain - it's that particular protein that makes food stick together, and is also commonly used as thickener in soups, processed cheeses or sauces. You can even find it sold in jars in a purefied form in most oriental foods stores, as it is extremely common in those sauces (or at least the Americanized versions thereof).

As the sufferer is unable to process this protein, it combines with the Immunoglobulin A antibody, and circulates in the blood stream until it reaches the skin - there it clogs up the small blood vessels, which attracts white blood cells and creates powerful chemicals called complements. This in turn causes an intensely itching rash that persists - scratching is a temporary relief, and may worsen the DH blisters; however, it will not spread the rash as the cause is under the skin, not on it. Essentially, the body rejects the gluten, and the results show on the sufferer's skin. This has been mostly elbows, knees, buttocks, and occasionally face.

How do you get it?

Genetics. You have to inherit the gene, and trigger it - in my case, it skipped a generation or two, as no known sufferers in my living family exist apart from myself. It started with the onset of puberty, and was quite a bitch to analyze. Think about it - all of a sudden you're getting a rash where none was before - a common occurrence, especially at puberty, except it itches something fierce. It comes and goes, and you don't know why. Welcome to the world of DH.

DH is slightly more prevalent in males, and seems to be a higher risk for Northern Europeans / Scandinavians (check and check, in my case). It occurs in 1:20,000 individuals - pretty good odds.

How long does it last?

Forever. There is no cure at this time. Spontaneous remissions occur perhaps 10% of the time, for no known reason.

Well, that sucks. What do I do?

First of all, try to immediately eliminate your gluten intake; this would be in theory 100% effective if possible, but is very difficult to accomplish as traces of gluten are in almost everything. Give us this day your daily bread? Nice one, god, cheers.

Some examples of gluten-full food are:
  • bread in all of its forms (think wheat tortilla, pizza crust, burger bun, pita wrap, Naan bread, noodles of all forms (except rice noodles, obviously), most cereals, chocolate cake!, granola...I could go on)
  • alcohol - wheat beer, barley beer, scotch (barley! hello!), anything with the word 'grain' in it is right out. Thankfully a lot of Polish vodka is still made the old way, from potatoes.
  • Beware processed foods like cream cheeses, cheese products or premade gravy
  • Needless to say, seitan and mock duck are indeed pure evil for you.
See Gluten free diet and gluten free recipes for more depressing lists.

Secondly, your doctor should be able to prescribe Dapsone, which alleviates the symptoms greatly, even if the mechanism isn't exactly known - it's possible it suppresses the immune system somewhat, so the IgA is not produced as much. In combination with "as gluten free diet as you can without going insane", it allows sufferers to lead more or less normal lives. Be warned however, as side effects include heightened sun sensitivity and anemia which may grow severe depending on Dapsone usage. Munch those vitamins just to be sure, and never change your dosage without the doctor's consent.

Amusing anecdote #1: Prior to discovery of Dapsone (fairly recent, no longer than a century), sufferers of DH usually killed themselves from the itching. Great stuff!

Amusing anecdote #2: Dapsone is primarily used to treat leprosy!

Ok, funny man, no more lip. What else do I need to know?

Good resources for gluten-free foods are health food stores - they will usually be able to direct you to the appropriate place. The ubiquitous Tapioca Loaf bread is available, as are blends created from brown and white rice. These have the consistency and taste similar to cardboard, and you can freeze them indefinitely - the only way to really consume them is to toast them, as the lack of chewy, sticky gluten makes them dry, crumbly, dense and an extremely good way to choke yourself (or others). Buckwheat (a misnomer, buckwheat is actually a fruit and has nothing do with wheat) is great grain alternative to look into, as it makes excellent noodles, pancakes or bread; it can also be eaten by itself with a bit of preparation as a hearty dish. Then of course there is corn, which is unfortunately too crumbly by itself to produce anything apart from noodles held together with lots and lots of xanthan gum - they're not all that great, sadly.

Always check the ingredients, and don't trust the restaurant's assertions - check with the chef if possible. Sadly, most soba noodles are not pure buckwheat (wheat/buckwheat blend) and are a danger to you. Likewise, if going Mexican, make sure you get the corn tortillas, not the flour. Forget Italian - there is nothing for you there. However, Vietnamese and Thai places which rely heavily on rice noodles and cellophane noodles (made from mung bean usually, harmless to you) should become your new favourite hangouts; added bonus are spring rolls which you can eat. Beware egg rolls and egg noodles though! And so it goes...

Finally, consider moving to England! They seem to have the gluten free folk figured out far better than the US. While you can find that Tapioca Loaf and rice bread in the US, health stores in the UK carry gluten free baguettes and country bread, pure-buckwheat soba noodles (the only place I've ever seen them), crackers, cookies, cereal and more. Obviously, YMMV - I can only speak for Austin and Minneapolis in the US, Cambridge in the UK; perhaps your area is more fortunate.

You could also experiment with mail order, but it quickly gets expensive.

That's about it. A final word of advice: if your doctor offers to show you pictures of people with advanced cases of DH, politely decline or brace yourself. It's not pretty.
A lot of personal experience and conversations with assorted doctors.
The directly medical stuff:
Dapsone - http://www.medsafe.govt.nz/Profs/datasheet/d/Dapsonetab.htm
Duhring - http://www.whonamedit.com/synd.cfm/1440.html
Numbers & Statistics - http://www.dermatitisherpetiformis.org.uk/whatisdh.html

Log in or register to write something here or to contact authors.