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RealShameBecauseILoveBread

Do I have DH?

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Hello everyone!

I've just had a visit to a dermatologist yesterday who said I may have DH. Unfortunately, I do not have the money for a biopsy right now, so I'm going to switch to a gluten-free diet and hope for the best until I'm able to get a biopsy. For now, could this helpful community maybe help confirm the doc's suspicion? Here's a novel length synopsis of my situation:

29, Male, 5’11” 165lbs.

Back in March, I developed four red, raised bumps on my LEFT LEG (picture added). They weren’t particularly itchy unless rubbing against clothing. At times they were hard to the touch and sometimes get a yellow head that would leak clear fluid. I didn’t think anything, thought they’d go away.

Over the next few weeks, more bumps appeared on my left leg. Not nearby and not in clusters. Usually one or two by themselves. Always on the left leg. Then it jumped to my RIGHT ARM. And got itchier. Flash forward to fourmonths later and it’s on all my limbs (though sparingly on my left arm, and even more sparingly on my right leg) as well as few on my back and chest.

First GP visit gave me a hydrocortisone cream that did absolutely nothing. Second GP put me on Betnovate steroid ointment as well as a week long round of antibiotics. The gel seemed to help some and even reduced the original four – one now little more than a scar – yet more continued to pop up seemingly in earnest. Right around this time is when the spreading and itchiness continued.

Had my blood work done, all normal – no celiac present but I know DH can slip through bloodwork. I don’t have a food allergy as far as I know, eat healthy, and haven’t deviated from my usual food choices. My stress levels aren’t higher than normal. I don’t smoke but do drink, and exercise somewhat regularly.

Where I am now: it’s mostly concentrated on left leg, right arm. VERY itchy, especially at night. Nothing seems to help and the spread seems to get worse.

IMAGES: https://imgur.com/a/yVOoR3q

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Boy! You just can't tell by photos. DH has so many different "looks". I am concerned with what you're NOT saying. You are not saying it's presenting bilaterally. You are not saying it's echoing or ghosting from one side to the other. Also, there are many rashes associated with celiac disease.

If you're already gluten free & can't afford a dh biopsy then just continue to be very strict in the gluten-free diet for a good 6 months & see what happens.

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Thanks for the reply, squirmingitch! I'm quite new to all of this, so I'm not 100% on how everything presents itself.

Bilateral - The rash is certainly on both legs and both arms, but not in the same spots and less present on one side (as in, lots of rash on my left leg, not so much on my right). Is a sign of DH that they're mirrored across limbs?

Echoing/ghosting - I think you're referring to whether or not they're leaving a mark once they disappear? I've had very few actually disappear. One that did left a faint mark that continues to get lighter. A typical, darkish scar. Brown in color. If you're referring to something else I'm not sure, sorry!

I just started the gluten free diet as of yesterday (oh boy, it'll be hard), but my girlfriend is already gluten intolerant so I'm hoping it won't be too difficult. I just wish I knew how to stop more from popping up - I had three show up on my neck just this morning :(

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Bilateral/echoing/ghosting all meaning the same thing in this case. Yes, for the most part, dh mirrors itself from one side of the body to the other including across limbs BUT that is not always a hard & fast rule. I think (my opinion) in the early stages, it can deviate from "the rules". Later down the line, it becomes more established in the hard & fast rules of symptomatic presentation. 

I will tell you this..... if it is dh, then you are going to have to be ultra strict & supremely careful. You can heed me or not but you will be the one to suffer if you don't. yeh, yeh, I know, everyone thinks they will be the exception & they will not be that sensitive. Not honking on you - just trying to make you understand how seriously I mean this okay? Do not, do NOT eat out, just DON'T. UNLESS it's a totally gluten free eatery. Otherwise, you're playing Russian roulette. Those with dh are extra sensitive to the tiniest amount of gluten.

Read bunches of threads in this dh forum. I've got a T-Storm moving on top of us & have to shut down & unplug --- bad lightning -- don't want a fried computer.

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Hi there,

I have had DH for years now...was very careful with my food...made sure it was gluten-free.  Here's the thing...I kept having outbreaks of the rash & blisters...then realized my body wash had gluten!  My hair color and shampoo also had gluten...everything has to be checked when it comes to ingredients...not just food.  So...just wanted to inform you of that.   

Also, beware of grains...corn and oats...they are high in prolamines and that can set off a reaction...wheat is very high in prolamines...but corn and oats are too...so be careful.  Now that I have monitored those grains and the other stuff...I have been okay.  No rash for 8 months.

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