Okay, here's a VERY abbreviated synopsis of my history , and I'm sorry for the piss poor spelling and lack of gramatical structure.. (sorry it's as long as it is). I am a 28 yr old white male. As an infant I had a severe intolerence to wheat and dairy. I was never diagnosed with DH or Celiac. At 2 yrs old, my mother began to feed my gluten with no problems. I never even gave it another thought. 3 yrs ago I started to notice tiny "pimple like eruptions" on my scalp. Mostly looked like "white heads" and where about 10-15 in number. They did not go away, and they itched intensley! Well , to make a long story short. I saw three seperate general practitionars who all cultured it. It came up negative for any bacteria or fungi , all three times. All three practitioners put me on a 10 day course of antibiotics (doxycycline .. I think) and all the Docs called it "folliculitis of unknown origin." (just a sidenote, I have slowly realized that this means.... We don't have a f'n clue... sorry, for the vulgarity,,,but I have been through hell. After each 10 day dose of antibiotics, My scalp would completely clear, then return to the same problem w/i 5 days or so. I was finally refered to a dermatologist who diagnosed it as ... you guessed it; unspecified recurrent folliculitis. (another side note... folliculitis is caused by staph bacteria. I had three seperate cultures that showed ,,, no staph!) The derm gave me Tetracycline, which is a long term use antibiotic that they give acne patients. They aren't quite sure why tetracycline clears the skin. It just does. This stuff cleared me up in like 3 days and I pretty much stayed clear. Tetracycline also happens to be a second line drug of choice for DH. Well , here's the skinny... recurring folliculitis is a real thing...but here is the problem. Recurring folliculitis has "periods of remission". Like weeks-months before a second episode. (this is due to people harboring staph bacteria in their nose) anyways,,,,that's another class that I won't get into. Well, my periods of remission where lasting 1-2 days after completion of antibiotic regimen.
Long story short... (sort of) I took tetracycline for 4 months and did awesome!!!... Only problem , tetracycline started giving me awfull side effects that I won't discuss. I thought to myself, tetracycline with side effects or recurring scalp "pimples". I chose pimples. About 3 days after stopping my tetracycline, I started getting the same "pimples". That same day I started breaking out again. This time it was on my face and back too. This confirmed that it wasn't folliculitis for sure. I was getting these things where I didn't even have hair follicles, like my forehead! Folliculitis? , my a**! Well, that same day I read about DH and gluten intolerence. I started thinking to myself, I had a horrible wheat "allergy" as an infant, DH mostly affects white males in 20's-30's of Euro decent. Hey, this is me! Well, I started a gluten-free diet and within 2 weeks my scalp and face are about 95% clear without any antibiotics for the first time in 3 years. And just in case you are wondering, My GP tested me for diabetes, thyroid, kidney, liver function, CBC, HIV, HEPATITIS, and all where perfectly normal. I am an athletic and healthy male.
Here's the question for the class. I made an appoint with an allergist to try to confirm this gluten DH thing scientificly through labs/biopsy's ect, and to have some generlized food allergy tests done to confirm any other "foods "I need to avoid, as I am now 100% sure that this is a food thing. I have been gluten free for 2 weeks which means I will probably test a "false negative" to an antibody test if I am DH. Will my allergist understand this, will he still test me anyways, or will I mostly get written off as a loon. And no class, I will not go back on gluten for 6 weeks to test positive on the antibody test. that's not an option. It's nice to be "leprosy" free after 3 years and I intend to stay that way! Is there any benefit to an actual definitive diagnosis? I mean hell , if the gluten-free diet works, it must be DH... Please feel free to respond and tell me what a hypochondriac I am , how I am ignorant, or how I mispelled everything on here (I already know I mispelled 50 or so words, and my gramatical structure sucks too!) Believe me, I have heard it from Doctors for the past three years with this... I could care less... And finally I end with an up-note! Here's a joke for all you medical-net junkies(including myself)! What did the hypochondriac have written as an epitaph on his tombstone?... "See, I told you all I was sick!"
I'm going through exactly the same scenario, exactly. I've suffered from rashes, boils, on my face and scalp for the last 3 years. I've been gluten free for two week and they have cleared up 90% without antibiotics exactly like you.
This is my theory, we have had an incredibly low immune system because of celiac but we have carried on having gluten. We have took antibiotics ( which ruin the villi in the stomach with over use ) to deal with the skin problems and they have relieved them short term only for them to come back, because our immune systems are low we have been susceptible to staph and bacterial infections but never dealing with the cause of why we are susceptible.
Well now I have my answer, I'm getting some nasal antibiotics and making sure I haven't got it up my snout, I'm sticking to a incredibly strict gluten free diet ( I don't even want to be in the same room if someone farts and they eat gluten ).. lol And I truthfully believe I will be all right.
I hope it works for you to.