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

It's beginning to look a lot like DH...

stephm

By stephm
in Dermatitis Herpetiformis

Recommended Posts

stephm Rookie
stephm
Posted

Hi there!

I'm new to this forum but it's like a jackpot of great information and advice, so I decided to drop by and introduce myself (and hopefully elicit a bit of advice to my situation as well). Also warning, I'm sorry if the description of my skin rashes may be graphic to you, so I'd just like to let you know in advance. Or you can just read the TL;DR at the end (: 

To start, I have a history of eczema as well as allergies to fish and nuts and a lactose intolerance. However, this past summer, my skin (which had been 100% normal up 'till then) started freaking out. I had a tomato-red dark rash on my neck, which was dry beyond belief with skin peeling from it, and I began to get dandruff as a result of dry skin on my scalp, as well as on my face, neck and ears. The rash went away in a couple of weeks with the help of some steroid creams, but not the dryness.

However, my eczema (which had been extremely mild) was getting worse and worse, but still manageable, until this past month.  But this month it got really bad - the rash that was on my neck this summer came back, and the exact same rash developed on the inside of my elbow. Not only that, it itches like my eczema has never done before. It feels like fire ants are crawling under my skin, but when I scratch, it feels even more itchy and I scratch for what seems like longer. It spread from the inside of my elbow to my shoulders, and from my neck to my face. It also developed on the backs of both my knees. The rashes are exactly symmetrical - on the outside of my shoulder, moving to the inside of my elbow and goes to the outside of my forearm and elbow. The shapes, patterns of spreading (red dots?) are exactly the same. Even weirder, I'm itchy in places like my belly button, ears (?) stomach, and the bridge of my nose. Oddly, about a day or two after the itch, clusters of dots/ rashes appear and the skin is no longer itchy. I have no idea what is wrong and all doctors want to treat is the eczema, seemingly ignoring the fact that it's coming back. I'm suspecting celiac because my eczema was so much more different than this rash, as well as the fact that my skin on these rashes are so dry that I can see "wrinkles" form as a result of not enough essential fatty acids. This could perhaps be malabsorption; the skin is painfully tight and it hurts to extend my arm/ stretch my neck as a result of this. 

But there's another thing. My mom really wants me to listen to the dermatologists' prescriptions and try out a routine of topical steroid usage for 2 weeks, after which point the derm wants to switch me to a non-steroidal cream. I mentioned DH and celiac, and she agreed to set me up for a blood test ( TTG - IGA). Previously to this I had been trying out a gluten-free diet for a week, before I accidentally consumed chicken wings without checking the ingredients... So there was a huge flare-up and my mom really doesn't believe I have celiac becuase the diet hasn't been working (even though I've ate gluten on it...). So, can I just go with the steroid usage for two weeks then wait some time afterwards and get the blood test then?

TL;DR: Really bad rash with tons of itching (feels like fire ants under my skin) with eerily symmetrical appearance of rashes on my arms. I just tried gluten free for a week, but upon resurgence of rashes my mom wants to follow derm's reccommendations of steroid routine for 2 weeks then non-steroid cream. Given the form for TTG - IGA blood test, should I just follow the steroid usage for 2 weeks and wait some time to get the blood test afterwards? Opinions welcome (:

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

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted

Noooooo!  I do not have DH (celiac rash) but I urge you to read the DH section.  Steroids can mess up biopsies and I am not sure about the celiac blood tests.  Often blood tests are negative in those that present with DH.  Your Derm would have to know how to biopsy the celiac rash.  

I hope others chime in fast.  In the meantime......read!  

cyclinglady Grand Master
cyclinglady
Posted

Going gluten free for a few weeks will not do the trick.  It can take weeks or months before getting good results.  So, your mom is wrong about that.  (I hope you are reading.....you best bet is to become very informed!) 

Welcome to the forum!  

squirmingitch Veteran
squirmingitch
Posted

No, no, no, no, no! Do NOT go gluten free!!!!!!! You have to get back on the gluten ASAP!!!! And you're going to need to STAY on it until all testing is done. That includes a dh biopsy or an endoscopy or the celiac blood tests. NO steroids!!!!!!! They can screw up the dh biopsy and the blood work & maybe the endoscopy.

DH does not immediately go away when you go gluten free. The antibodies are deposited under the skin & it takes time for them to get out from there. In the meantime, the rash can come & go at will -- either on gluten or off gluten. A dh biopsy is taken on a CLEAR spot ADJACENT to an active lesion. The patterning the pathology will be looking for is easily destroyed by scratching and by the trauma of the lesion itself.

It can take years on a strict gluten-free diet for the rash to resolve completely. 60% of us test negative on the blood panel -- that's because the antibodies are concentrated under the skin. We still get the damage to the villi though but it tends to be patchier.

If you get a dh biopsy done & it's positive then you have a dx of dh. A dx of dh is a dx of celiac and no further testing is needed.

SLLRunner Enthusiast
SLLRunner
Posted

Welcome, Stephm.

Do not go gluten free prior to blood testing and endoscopy. In fact, you must eat gluten until all testing is done, otherwise your results will most likely be a false negative. Besides, it's a pain in the butt doing a gluten challenge after eating gluten free for just awhile. 

Tell your dermatologist straight out that you believe it's DH.  Give her this website and tell her to read: Open Original Shared Link  There is a special biopsy procedure for DH.

DH is an automatic diagnosis of celiac, no other testing necessary.

Personally, I would say no to the steroids at this point. 

I'm sure your mom means well, but you might want to study up on DH and celiac and share with her. :) Besides the link above, here's a few more:  

Open Original Shared Link

Open Original Shared Link

 

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      130,028
    • Most Online (within 30 mins)
      7,748
    Ellen Bergeron
    Newest Member
    Ellen Bergeron
    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

    • Scott Adams
      Gluten free thyroid medications

      By Scott Adams · Posted

      The pharmaceutical industry (including BIG PHARMA! 😉) is very good about cleaning procedures before different drugs might be made using the same machinery. I don't believe cross contamination would be something to worry about, otherwise people with serious allergies, for example to antibiotics, would have serious issues with prescriptions drugs.
    • KimMS
      Gluten free thyroid medications

      By KimMS · Posted

      Thanks for sharing that site! Do you know if that site has any information about manufacturing/possible cross contact on it? I can't find it. When I have called manufacturers, most of them say they can't guarantee no cross contact in manufacturing (except Lannett, Mylan and possible Amneal, which aren't available near me).
    • Diana Swales
      Recently qualified Nutritionist looking for support

      By Diana Swales · Posted

      After years of living with Celiac Disease, learning through every bump and breakthrough, and guiding others through the gluten-free maze — I've officially qualified as a **Nutrition Coach** with Precision Nutrition. Now I’m ready to take this journey deeper… but I need your help. To complete my final certification hours, I’m offering **a limited number of FREE spots** (yes, completely free!) to work with me over the next few weeks. I’m looking for **5 people** who: Are newly diagnosed with Celiac Disease or gluten-intolerant Feel overwhelmed, confused, or frustrated with food Want support from someone who truly understands Are ready to build confidence and calm in their daily eating We’ll work together on what matters to *you*: Your food choices Your mindset Your kitchen habits Your ability to speak up for your needs This isn’t just about avoiding gluten — it’s about reclaiming ease, joy, and nourishment. If you're interested, comment below or DM me the word **"Ready"** and I’ll send you the info to get started. Let’s make food feel safe again. With care, **Diana**
    • Dora77
      Possible cross-contamination – concerned about symptoms

      By Dora77 · Posted

      Hi everyone, I have celiac disease and I’m asymptomatic, which makes things more stressful because I don’t know when I’ve been glutened. That’s why I try to be really careful with cross-contamination. For almost a year, I’ve been having yellow/orange floating stools consistently. I’m not sure if it’s related to gluten exposure or something else going on. I’ve been trying to identify any possible mistakes in my routine. Today, I made myself some gluten-free bread with cheese. Normally, I’m very careful: I use one hand to handle the cheese packaging (which could be contaminated, since it’s from the supermarket and was probably sitting on a checkout belt that had flour residue), and the other hand to touch my gluten-free bread and plate. But today I accidentally touched the bread with the same hand I used to grab the cheese pack from the fridge. The fridge handle might also have traces of gluten since I live in a shared household where gluten is used. I’m worried this mistake could have contaminated my bread. There were no visible crumbs or flour, but I know even trace amounts can be a problem. Has anyone had similar experiences or symptoms from this level of contact? Could this kind of exposure be enough to trigger symptoms or cause intestinal damage? Thanks for reading.
    • Mswena
      Lubriderm-gluten-free?

      By Mswena · Posted

      So eight days in a row of gluten on top of gluten on top of gluten, I just had to resort to the EpiPen. I wish I could post a picture because you wouldn’t believe how enormous my gut is! It makes my head look like a pinhead.Ahhhgggsahhhhh!!!! I have discovered that I have to read the ingredients when I use a product up that I’ve been able to use without getting a reaction, because they can change the ingredients and bam my toothpaste now has gluten!!! my doctor told me gluten free means it has 20 ppm which someone with a severe a celiac as I’ve got that thing there kills me. I try to find certified gluten-free in everything. I can’t eat any oats unless it’s Bob’s red mill certified gluten-free. Good luck everybody this autoimmune disease is wicked wicked
×
×
  • Create New...