Jump to content

  • 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

Is This Possibly Dermatitis Herpetiformis?

djs89

By djs89
in Dermatitis Herpetiformis

Recommended Posts

djs89 Rookie
djs89
Posted

I have no official diagnosis of celiac disease, but I experience symptoms similar to it. However, I'm not brave enough to have an intestinal biopsy. I haven't been adhering to a strict gluten free diet due to a lack of confirmation. I have a family history of Crohn's disease, which seems to be linked to Celiac disease. I had a celiac blood test, which came back negative. Even if I do not have celiac disease, it seems like I do have an intestinal problem of some kind. I also have typical symptoms of an autoimmune disorder, and I know that consuming wheat/gluten products makes me ill.

 

Recently I've had rashes on the back of my legs. For about two months it comes and goes, in the same area. I took pictures when it was the worst I've seen. I've never experienced this degree of a rash before, but I've always had red bumps form randomly on my chest, back and arms.

 

I recently read about Dermatitis Herpetiformis and it's connection to celiac disease. I would like to know opinions of anybody experienced with this, if this rash could possibly be that. I don't experience much itchiness however, which I read is a symptom of DH. Sorry, the images are ugly. :unsure:

 

http://imageshack.us/a/img593/3175/skin1od.webp

 

http://imageshack.us/a/img195/6315/skin2w.webp

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

Celiac.com Sponsor (A8-M):


squirmingitch Veteran
squirmingitch
Posted

There are many rashes & skin conditions associated with celiac disease & probably with non celiac gluten intolerance. But the dh rash itches like the very devil!!!! Non-stop, 24/7 & 365. If your rash does not itch then it's not dh.

djs89 Rookie
djs89
Posted
  • Author

Could it be that the rash itches because people try to touch it or pick at it? I haven't touched the rash since I noticed it, and it is only mildly bothersome. I avoid scratching it because that would make it worse. I also put clay on it, perhaps that helped prevent itchiness?

tinpins Rookie
tinpins
Posted

I've just been diagnosed with dermatitis herpetiformis and the condition from my personal experience  is indescribably itchy. 

 

This link would be good to read for clarification:

 

Open Original Shared Link

 

Here's an excerpt from the article:

 

 “All regions are liable to invasion … the face and scalp, elbows and knees, and palms and soles. The most striking symptom is the itching … in all cases violent or even intense …disproportionate in excess of the amount of eruption … a persistent itching, causing the sufferer to scratch constantly … generally present for several days before any sign of efflorescence … when the eruption is profuse, (itching, burning or pricking sensations) are intense, and cause the greatest suffering.”

djs89 Rookie
djs89
Posted
  • Author

Ahh, ok. Does the itchiness correlate to gluten consumption? For example is it more itchy if you eaten gluten, less itchy if you avoid it?

squirmingitch Veteran
squirmingitch
Posted

No, it is not more or less itchy. It just itches like NUTS always. It doesn't matter if you scratch or not. It doesn't matter if you put clay on it. It's just plain HELL. It is called the suicidal itch & that moniker is in medical texts as well as the brains of we who suffer with it. Does that answer your question?

bartfull Rising Star
bartfull
Posted

Look up gutate psoriasis. As a matter of fact, if you google "gutate lesions" you will see images that look very much like the pics you posted. That's not to say that's what it is, but it might be. Gutate psoriasis itches too, but not as badly as DH.

 

It sounds like you do have a problem with gluten. You may or may not have celiac, but there is a thing called non-celiac gluten intolerance that gives the same symptoms. And psoriasis is definitely associated with gluten. Stress is another factor.

 

I have psoriasis. Mine is palmoplantar pustular. It doesn't itch, it just hurts. I only get it on my hands and feet. The feet take forever to heal. At one point my hands were completely healed and my feet were finally ALMOST completely healed. Then I got glutened. My hands flared for a while, but my feet flared badly and are still a mess. As a matter of fact, my feet have started itching - not all the time, but in waves. They'll be OK for a while, then I get to itching so much I HAVE to scratch. Half an hour later it'll calm down. This happens several times a day.

 

At first I thought I might be developing DH too, especially because the rash looks different than it used to. But I now believe I have develpoed gutate psoriasis on my feet.

 

And the other day I had a REALLY bad day. Lots of things went wrong and I was totally stressed out for a while. I woke up the following morning with new pustules on my hands - lots of them. I know for certain it wasn't food that did it because my house and shop are completely free of all of my "poisons". Everything I ate was not only what I always eat, but there were no new packages involved. (It's good to read the label EVERY TIME you buy something because they change ingredients often depending on price and availability.)

 

So try to think back. What did you eat when your rash flared, and did anything happen to stress you out during those times?

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

Celiac.com Sponsor (A8-M):


djs89 Rookie
djs89
Posted
  • Author

I also thought it could be psoriasis. It can be difficult to tell, based on pictures online. It doesn't look like most of the pictures of psoriasis I've seen, but it could be that. I haven't done a gluten free diet, yet, but I have never had this kind of rash before.

cahill Collaborator
cahill
Posted

No, it is not more or less itchy. It just itches like NUTS always. It doesn't matter if you scratch or not. It doesn't matter if you put clay on it. It's just plain HELL. It is called the suicidal itch & that moniker is in medical texts as well as the brains of we who suffer with it.

 Yep , that pretty much sums it up

bartfull Rising Star
bartfull
Posted

types_guttate.webp

This is a picture of gutate psoriasis.

djs89 Rookie
djs89
Posted
  • Author

Yes, it could be that. Someone else in my family has psoriasis. I have small bumps under the skin of my palms also, which looks like it could be mild psoriasis.

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. ShariW
      - ShariW commented on Scott Adams's article in Frequently Asked Questions About Celiac Disease
      4

      What are Celiac Disease Symptoms?

      In addition to gastrointestinal symptoms like diarrhea, I had gastroesophageal reflux that was becoming intolerable despite treatment with PPIs and antacids. When I went gluten-free, the GERD lessened tremendously (as did the other symptoms).
    2. klmgarland
      - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

      Thank you so very much Scott. Just having someone understand my situation is so very helpful. If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    3. Scott Adams
      - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to ...
    4. Scott Adams
      - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof

      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating...
    5. Scott Adams
      - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      1

      Methylprednisone treatment for inflammation?

      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,908
    • Most Online (within 30 mins)
      7,748
    ebrown
    Newest Member
    ebrown
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • klmgarland
      Help I’m cross contaminating myself,

      By klmgarland · Posted

      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      Help I’m cross contaminating myself,

      By Scott Adams · Posted

      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      My only proof

      By Scott Adams · Posted

      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisone treatment for inflammation?

      By Scott Adams · Posted

      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
    • Scott Adams
      I think I am gluten intolerant

      By Scott Adams · Posted

      Based on what you've described, it is absolutely possible you are dealing with non-celiac gluten sensitivity (NCGS).  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.   Your situation is a classic presentation: a negative celiac panel but a clear, recurring pattern of symptoms triggered by gluten. The symptoms you listed—particularly the extreme fatigue, bloating, neurological-psychiatric symptoms like depression and anxiety, and even the skin manifestations like facial flushing—are all well-documented in research on NCGS. It's important to know that you are not alone in experiencing this specific combination of physical and emotional reactions. The only way to know for sure is to commit to a strict, 100% gluten-free diet under the guidance of a doctor or dietitian for a period of several weeks to see if your symptoms significantly improve. It is also crucial to rule out other potential causes, so discussing these symptoms with a gastroenterologist is a very important next step.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.