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

Pompholyx

ABQturkey

By ABQturkey
in Dermatitis Herpetiformis

Recommended Posts

ABQturkey Rookie
ABQturkey
Posted

My son's celiac panel came back negative (his sister was off the charts and has been gluten-free for almost 2 years now). He was 13 at the time and I didn't want to put him through a biopsy (he's 15 now). For the past 6 or 7 months (maybe even more) he's had this rash on his hand and it spread to some of his fingers and now over to the other hand. The dermatologist diagnosed pompholyx and gave a strong steroid cream which worked at first but now doesn't seem to be doing anything at all. I'm wondering if it's due to gluten? Has anyone else heard of this condition being associated with celiac disease?

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

Celiac.com Sponsor (A8-M):


jilliebear Newbie
jilliebear
Posted

I was kind of in the same situation before I knew I had any food allergies or sensitivities. I had the most horrible rash and blisters all over my inner hand and fingers and for years doctors could not get it under control. Through an elimination diet, I found out that I am completely intolerant to gluten, although I have never been medically diagnosed with celiac disease because I refuse to go back to eating gluten for the amount of time needed for the tests. After I cut gluten out of my diet, the skin problems that I had been dealing with on my hands completely disappeared. So in my experience, the skin problems that I had were absolutely related to gluten intolerance. Aside from that, my best advice is to be careful with skin creams and lotions - the only flare up I've had was when I didn't read the ingredient list on some lotion carefully enough and within a matter of hours of me putting the cream on my hands, I started to see the rash come back.

Hope this helps!

ravenwoodglass Mentor
ravenwoodglass
Posted

Did the derm do a biopsy to the skin that is next to the lesions? It could be DH. If they biopsy the lesion itself it will be a false negative. I just looked at a bunch of pictures of pompholyx on the net and many of them looked just like my DH. :blink:

Many derms are clueless about DH, mine was diagnosed first as 'poison ivy in my blood' then as atopic dermatitis, then as 'pickers acne'.

I had DH for about 25 years before any gut symptoms showed up as more than an off and on annoyance.

If he does have DH that is a diagnosis of celiac. No more testing would be needed.

Archived

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

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


  • Member Statistics

    • Total Members
      132,033
    • Most Online (within 30 mins)
      7,748
    CE1963
    Newest Member
    CE1963
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Jmartes71
      Fighting for a name

      By Jmartes71 · Posted

      Thankyou so much for your words.Its a hard battle when a supposed well known hospital whose celiac " specialist " has down played me because my colon looks fine and put it in my medical and so pcp doesn't take seriously. In their eyes we all carry that gene.Im having alot of bad days trying to be positive because of it.
    • Scott Adams
      Celiac getting dentures

      By Scott Adams · Posted

      Your experience is both shocking and critically important for the community to hear, underscoring the terrifying reality that cross-contamination can extend into the most unexpected and invasive medical devices. It is absolutely devastating that you had to endure six months of sickness and ultimately sustain permanent vision loss because a doctor dismissed your legitimate, life-altering condition. Your relentless research and advocacy, from discovering the gluten in MMA acrylic to finding a compassionate prosthodontist, is a testament to your strength in a system that often fails celiac patients. While the scientific and medical consensus is that gluten cannot be absorbed through the skin or eyes (as the molecules are too large to pass through these barriers), your story highlights a terrifying gray area: what about a substance *permanently implanted inside the body*, where it could potentially shed microparticles or cause a localized immune reaction? Your powerful warning about acrylic lenses and the drastic difference with the silicone alternative is invaluable information. Thank you for sharing your harrowing journey and the specific, severe neurological symptoms you endure; it is a stark reminder that celiac is a systemic disease, and your advocacy is undoubtedly saving others from similar trauma.
    • Scott Adams
      Dedicated gluten-free Restaurants in East Bay (near San Francisco):

      By Scott Adams · Posted

      Those are driving distance from me--I will try to check them out, thanks for sharing!
    • Scott Adams
      Fighting for a name

      By Scott Adams · Posted

      I am so sorry you're going through this bad experience--it's difficult when your own lived reality of cause and effect is dismissed by the very professionals meant to help you. You are absolutely right—your violent physical reactions are not "what you think," but undeniable data points, and it's a form of medical gaslighting to be told otherwise, especially when you have a positive HLA-DQ2 gene and a clear clinical picture. Since your current "celiac specialist" is not addressing the core issue or your related conditions like SIBO and chronic fatigue, it may be time for a strategic pivot. Instead of trying to "reprove" your celiac disease to unwilling ears, consider seeking out a new gastroenterologist or functional medicine doctor, and frame the conversation around managing the complications of a confirmed gluten-free diet for celiac disease. Go in and say, "I have celiac disease, am strictly gluten-free, but I am still suffering from these specific complications: SIBO, chronic fatigue, dermatological issues, and high blood pressure linked to pain. I need a partner to help me address these related conditions." This shifts the focus from a debate about your diagnosis to a collaborative plan for your current suffering, which is the help you truly need and deserve to work toward bouncing back.
    • NanCel
      Celiac getting dentures

      By NanCel · Posted

      Hello, no I had to have them re done and then used a liner over the top.  Many dentists are not aware of the celiac effects.  Best of luck.   There is other material, yet, very expensive.
×
×
  • 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.