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Is There Always A Visible Rash?

GiGi F

By GiGi F
in Dermatitis Herpetiformis

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GiGi F Newbie
GiGi F
Posted

I'm new here and thankful to see I'm not alone. I have had an itchy, creepy crawly scalp for 3-4 years and it drove me crazy. My hair dresser checked my scalp every time I went and never found dandruff, redness, nothing. I changed hair products, tried shampooing more, shampooing less . . . nothing made a difference.

Fast forward to 6 months ago and I occasionally began to find pimple-like bumps on the back of my neck at the hairline and my underarms began itching the same way my scalp did. Oy!

Over the last month or so I began researching and decided to go gluten-free for a while to see if it would work. Oh my goodness! Within a couple of days I was (almost) itch-free! I think I'm on the right track.

My question, though . . . does dh always present with a visible rash? I can't really determine if these occasional bumps are even dh . . . they kind of just dry up and peel off.

And should I just continue with my gluten-free diet since it seems to be working or should I consult a doctor?

I really appreciate any feedback you may have. This gluten thing has really taken me by surprise . . . I grind my own flour and make my family's bread . . . not easy to give up :-(

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squirmingitch Veteran
squirmingitch
Posted

You could be gluten sensitive or it could be early form of dh presenting. One think is for sure --- you went gluten free & the problem resolved itself. That's a very big clue right there.

There has not been that much research done on dh to document all of it's presentations in all of it's phases. We are all different. Many of us believe that someone like you (describing what you have) is probably in the very early stages of dh presenting so you're not getting the blisters, oozing icky stuff YET.

If you came on here stating what you have but had not yet tried going gluten-free & could not tell us that going gluten-free resolved the issue then it would mol be a case of "your guess is as good as mine".

As to continuing gluten-free or consulting a doctor.... if you've been reading on here, it's very frustrating to get an ironclad diagnosis. So much depends on the doc. There are soooo very many out there who have no clue about celiac disease & refuse to even consider it or test for it. BUT, if a diagnosis is what you will need to stay on the gluten-free diet so that down the line you don't start doubting yourself then you should strongly consider trying to get a diagnosis.

itchy Rookie
itchy
Posted

As squirmingitch says, there aren't likely to be any easy, straightforward answers.

Many of us had mild symtoms for a while before full blown DH set in. Are your symptoms a precursor to DH, or some other issue completely? Hard to say.

You didn't mention whether you have any gastrointestinal issues. DH is coeliac disease. While people with DH often have much reduced GI symptoms compared to other coeliacs, they do often have GI issues of some sort. That could be a tip off.

If you are getting relief, it sounds like you are on the right track. Good luck.

Di2011 Enthusiast
Di2011
Posted

I'm new here and thankful to see I'm not alone. I have had an itchy, creepy crawly scalp for 3-4 years and it drove me crazy. My hair dresser checked my scalp every time I went and never found dandruff, redness, nothing. I changed hair products, tried shampooing more, shampooing less . . . nothing made a difference.

Many of the DH forum members describe the 'creepy crawly' feeling of DH that is not always linked in the same area with lesions. As others here have expressed it presents in many different ways but is rather unknown (unresearched/documented) in terms of presentation. I have had head to toe lesions with periods where body areas would be healed and clear only to wake up the next day with bruising so bad that I'd have up to 4-5inches of bruising from something that bothered me overnight or the day before. It is quite disconcerting to wake up with half a breast discoloured!

Fast forward to 6 months ago and I occasionally began to find pimple-like bumps on the back of my neck at the hairline and my underarms began itching the same way my scalp did. Oy!

I have always been an itchy/scratchy person who put it down to just my 'bad skin'. I went to work in a bakery in August 2010 and quit in May11 with head to toe DH. Fortunately for me it was quite obvious what the culprit was. I literally in one six hour shift went from a bit itchy (hairline especially), very mild acne (in my 30s), strange mosquito bite experiences and lots of ingrown hairs especially on my legs to full blown insane itching. I am not exaggerating. Six hours.

Over the last month or so I began researching and decided to go gluten-free for a while to see if it would work. Oh my goodness! Within a couple of days I was (almost) itch-free! I think I'm on the right track.

My question, though . . . does dh always present with a visible rash?

My 9y/o son is in the early days of DH. He has been been getting better and better with our recent conversion from gluten lite to gluten free for him. Unfortunately we are two days into school holidays and grandma feeding him gluten lunches ((dont ask.. very complicated as others experience with gluten and family :(( Tonight he is uncomfortable and itchy - what you and I would describe as creepy crawly - had two showers in 20 minutes and now I know he won't sleep well tonight for the first time in two weeks. Go with your gut and when your gut tells you. At the moment your comments hint that your gut says gluten. If your gut and experiences tell you its not gluten then take another path. If I & son had taken the medical path in the past 12 months then I estimate about $5000 would have been wasted when simple diet elimination has been the key to figuring it out. Mind you .. it ain't 'simple' just cheap. We eat simple. Meat, veg, fruit etc.. I have gluten free options for Liam that I can't tolerate but work for him.

I can't really determine if these occasional bumps are even dh . . . they kind of just dry up and peel off.

And should I just continue with my gluten-free diet since it seems to be working or should I consult a doctor?

I actually believe for DH patients this is simply a financial decision. If you can afford a potential long list of second/third opinions, medications etc then go for it. I can't do so therefore I have spent my time and finances on diet. Next step if you are financial is to ask yourself - do I need an official diagnosis??? This is critical if your college/workplace/family etc have pressures on your diet.

I really appreciate any feedback you may have. This gluten thing has really taken me by surprise . . . I grind my own flour and make my family's bread . . . not easy to give up :-(

I found that within about max of 3-4 weeks (a bit longer with other products) my tastebuds had adapted to gluten free flours and mixes etc. One day you may be the best producer of commercial gluten free flour mix and breads on the market. It is a growing business. BTW you might get the chemistry but for me and my son Gluten free bread is worse than the gluten-full but for some reason Gluten free toasted is far better. We have lots of grilled toast with various ingredients. Liam loves it. It has become a convenient pizza/bread replacement

GiGi F Newbie
GiGi F
Posted
  • Author

As to continuing gluten-free or consulting a doctor.... if you've been reading on here, it's very frustrating to get an ironclad diagnosis. So much depends on the doc. There are soooo very many out there who have no clue about celiac disease & refuse to even consider it or test for it. BUT, if a diagnosis is what you will need to stay on the gluten-free diet so that down the line you don't start doubting yourself then you should strongly consider trying to get a diagnosis.

Thank you for the encouragement! I think your suggestion about an official diagnosis being my motivation to remain gluten-free is a valid one and something I need to think about. Right now I'm relishing in my "less itchy" condition that it's hard to imagine I would go back.

GiGi F Newbie
GiGi F
Posted
  • Author

You didn't mention whether you have any gastrointestinal issues. DH is coeliac disease. While people with DH often have much reduced GI symptoms compared to other coeliacs, they do often have GI issues of some sort. That could be a tip off.

If you are getting relief, it sounds like you are on the right track. Good luck.

You'r right, I forgot to mention my GI issues . . . the itch took over my life and it was easy to overlook the other problems I was having.

I wake up each morning with discomfort and ultimate diarrhea. Then I'm fine for the rest of the day. That has definitely improved as well over the last couple of weeks.

GiGi F Newbie
GiGi F
Posted
  • Author

I found that within about max of 3-4 weeks (a bit longer with other products) my tastebuds had adapted to gluten free flours and mixes etc. One day you may be the best producer of commercial gluten free flour mix and breads on the market. It is a growing business. BTW you might get the chemistry but for me and my son Gluten free bread is worse than the gluten-full but for some reason Gluten free toasted is far better. We have lots of grilled toast with various ingredients. Liam loves it. It has become a convenient pizza/bread replacement

I sure hope to get the that point as well. Right now, I'm just avoiding bread, all bread, and focusing on fruits and veggies. Maybe I can invest in a new mill someday to try experimenting with other grains and beans. :)

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squirmingitch Veteran
squirmingitch
Posted

GIGI, Just a heads up..... when you go gluten-free & THEN you go back to gluten for the testing for diagnosis which is what you have to do --- almost everyone has way worse reactions to gluten than they had before going gluten-free. So you might want to think about not putting that off too long before you start the testing process.

pricklypear1971 Community Regular
pricklypear1971
Posted

The DH lesions can be tiny. And they evolve...mine certainly did. Trust me, you don't want to go there.

If your rash gets better off gluten, you have a gluten related rash. You have a problem with gluten. That simple. Don't let any doctor persuade you otherwise.

I'm glad you've figured it out and that your gastro symptoms are improving!

And yes, you must be eating gluten to go through testing; however, I'll give you the same advice my dermatologist gave me. DON'T GLUTEN YOURSELF ON PURPOSE! That rash can come back like a lion. It is very unpredictable and uncontrollable without a very specific drug you may not get from a doctor (dapsone). And that may or may not work, and you may or may not be able to use it.

Sorry to yell but the more I read about DH, and read comments and posts from DH sufferers, the more convinced I am that dh evolves. And it gets BAD, and you can't predict what will happen next. It isn't worth it.

squirmingitch Veteran
squirmingitch
Posted

Listen to Prickly! I wholeheartedly agree with her. We've both "BEEN THERE" & don't wish another single soul to "be there". It sucks. It more than sucks. You know, dh is called THE SUICIDAL ITCH and they ain't just whistling Dixie!

I only wish like heck I had known I had dh when mine was teeny tiny & not widespread. Ohhhhhh, how I wish I could go back in time.

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