Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Do I have DH?


RealShameBecauseILoveBread

Recommended Posts

RealShameBecauseILoveBread Newbie

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: Open Original Shared Link


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



squirmingitch Veteran

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.

RealShameBecauseILoveBread Newbie

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 :(

squirmingitch Veteran

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.

  • 2 months later...
No more doughnuts Rookie

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.

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,187
    • Most Online (within 30 mins)
      7,748

    Jackie49
    Newest Member
    Jackie49
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      First, welcome to the forum, @boy-wonder! Second, a little clarification in terminology is in order. Granted, inconsistency is rampant when it comes to the terminology associated with gluten disorders, but it has more or less become settled in this fashion: "Gluten intolerance" is a general term that car refer to either celiac disease or NCGS (Non Celiac Gluten Sensitivity). "Gluten Sensitivity" is the shortened version of NCGS. Third, Celiac disease is not an allergy to gluten. It is an autoimmune disorder characterized by gluten ingestion causing the immunes system to attack the lining of the small bowel, causing damage to it over time due to the constant inflammation that wears down the "villi" (mucosal finger-like projections that make up the lining). Over a significant period of time as gluten continues to be consumed, this generally results in impaired nutrient absorption. There are specific blood antibody tests available to check for celiac disease but the testing will not be valid while on a reduced gluten diet or a gluten free diet. Those already having having begun a gluten free diet must go back to consuming generous amounts of gluten for a period of weeks if they wish to pursue testing for celiac disease. Fourth, NCGS shares many of the same symptoms of celiac disease but does not damage the lining of the small bowel as does celiac disease. There is no test for it. A diagnosis for NCGS depends on first ruling out celiac disease. It is 10x more common than celiac disease. Some experts feel it can be a precursor to the development of celiac disease. Eliminating gluten from your life is the antidote for both. Fifth, you state that you are convince you don't have celiac disease by are just "gluten intolerant" (aka, gluten sensitive). How do you know that? It seems to me you are making a dangerous assumption here. I suggest you consider getting formally tested for celiac disease.
    • AllyJR
      Has anyone found a gluten free parakeet seed mix? I can't find a single one! My doctor wants me to make sure all pet food in the house is gluten free but I'm not sure if that's even possible with parakeets. We love our birds so much! I'm wondering if anyone has ever made their own bird seed mix if gluten free ones are not available. 
    • boy-wonder
      Hi, new member. About me, I had been suffering with weight gain, bloating and irregular and extreme bowel habits for a year or so. For example, I went on holiday in 2023, then again I  2024 at the same time of year and every shirt I wore in 2023 didn't fit anymore, couldn't even do the buttons up. Being in my mid 50s I put it down to age and middle aged spread. I'd been lucky all my life having good metabolism and being able to eat anything and as much as I like without putting on any weight, it drove my other half mad. Over a conversation with a friend health and age Related stuff came up and he mentioned someone he knew who had recently found out they were gluten intolerant,  I looked it up and had every one of 8 or so symptoms listed. Bloating,  weight gain,  headaches, brain fog,  constipation, etc etc. I took the decision to give going gluten free a try. Within 1 week I had lost 4 lb, now 7 weeks in I've lost 13 lb. I feel much better in general,  the bloating has severely subsided, it used to keep me awake at night as I felt so uncomfortable.  So pretty much a success story, as everyone here knows,  going gluten free isn't always easy, and eating out can be awkward,  but I consider myself lucky that I appear to have an intolerance rather than an allergy or being celiac.  I can deal with most of the gluten free options at the supermarket but, the big one for me is bread, I love bread, and the gluten free options I've tried are pretty poor. I was at a posh black tie event last night and chose all the food options I thought would be gluten free,  however,  there was bread on the table and I couldn't resist it, I had I small piece of bread,  god it was good, I wanted more but I resisted. Today I feel a bit dodgy, my stomach is churning, and I generally feel a bit urgh.  So here's the question, is that really down to 1 small piece of bread or is it coincidence?  I'd be interested in hearing how other people have reacted to a similar situation,  as I was considering having a day off every now and then and enjoying some lovely fresh bread.
    • ValerieC
      Does anybody know of a guide that ranks reevaluates universities and colleges in terms of their accommodation of celiac disease or food allergies?   Thanks in advance for any leads! Valerie 
    • thejayland10
      thank you, i have been doing that the last few weeks and will continue to do so. I had not had my ttg iga checked since I was diagnosed 14 yrs ago so I am not sure if they ever dropped below the 15-20 range.    all my other labs are completely normal but I am concerned that this may be signs of refractor celiac or something else since I'm so careful with gluten-free diet 
×
×
  • Create New...