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

Could Sever Acne Really Have Been Mild Dh

elle's mom

By elle's mom
in Dermatitis Herpetiformis

Recommended Posts

elle's mom Contributor
elle's mom
Posted

Hi everyone-

I have recently been reading and learning a lot about celiac and dh, since two of my children have been on a gluten-free diet-only one child is officially diagnosed as celiac-but I'm pretty sure the other one has it too and I am nursing her so I'm on the diet too.

Anyway, what I'm wondering is DH would respond at all to antibiotics? Does anyone have experience with this?

What happened to me was that at 23 I suddenly was breaking out with TERRIBLE acne on my face, neck, and chest. It was not itchy, but actually painful. It was so bad I barely would go out into public, only when I had to. I was in college at the time and even embarrassed to go to class. I was seeing a dermatologist who had me try several creams, ended up with oral antibiotics that helped clear it up but whenever I'd try to go off the antibiotics I'd break out again. So I ended up being on them mostly for about 3 years. I've been pregnant on and off the past 8 years, with four kids, so I've been on & off antibiotics this whole time. But now that my 2 kids are responding well to the gluten-free diet, I'm wondering if maybe I was gluten intolerant all along. There are many things leading me to thinking this:

First is the acne. My mother says when I was a baby (don't know how young) they think I might have had chicken pox combined with scabies. She says I broke out really bad, but I never had any recurrent rashes as a child so I don't know. Also, I have always been what I consider tired all the time-can't live without a nap. Also, after eating out at a restaurants almost always end up in the bathroom with severe cramps and d. Mostly just eat at home and I think I naturally realized what didn't cause these issues. Also, mood swings and anxiety. The mood issues run in my family-but no one has ever been diagnosed with celiac or dh-didn't even know what it was until 2 years ago when dd was diagnosed. My grandfather died of scleroderma. He had a milk "allergy" and was also "allergic to the sun" most of his life. He also suffered from severe d up until his dying day.......my grama makes really good homeade bread-he ate it all the time.

From what I've been reading the pieces seem to fit, but I just don't know if the antibiotics would have helped actual dh. If anyone can shed light I would greatly appreciate it.

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

Celiac.com Sponsor (A8-M):


captaincrab55 Collaborator
captaincrab55
Posted
Hi everyone-

Anyway, what I'm wondering is DH would respond at all to antibiotics? Does anyone have experience with this?

From what I've been reading the pieces seem to fit, but I just don't know if the antibiotics would have helped actual dh. If anyone can shed light I would greatly appreciate it.

One needs to take the right antibiotics.. I take 1- DAPSONE 25MG daily for DH...

mysecretcurse Contributor
mysecretcurse
Posted

How long have you been on the diet? And are you being 100% gluten free?

The only way to tell for sure if it's related is to wait and see if it gets better on a gluten-free diet. But it can take some time, so if it doesn't get better right away, don't give up yet. It usually takes me at least a few months of being gluten-free completely for ALL my skin problems to clear up.. and then if I accidentally get glutened.. ughhhh process starts all over again. It is slowly getting better and better over time though, a sort of three steps forward two steps back sort of deal. A couple years ago I was covered with HORRIBLE Dh all over my face and scalp (and yeah it can look like really bad acne, except for me the blisters were itchy and also extremely painful, way more than any normal "zit" would be-feels like having a broken off needle point stuck under my skin).

It probably wouldn't respond to normal antibiotics (I don't know anything about the special sort that captain mentioned) unless you get a secondary infection of some sort. This happened to me once when my skin was at it's worst.. I also had major depression/anxiety issues unknowingly due to my celiac, and had this compulsive nervous habit of picking at my blisters.. led to a severe staph infection, and it took about a month of antibiotics to clear that up. Was painful, realllllll painful. Don't touch it! Haha..

Oh and another way to see if it's DH is to take some lugols iodine and see if it makes it flare up.. iodine is good for the body, it's something we need but unfortunately it's somehow involved in the process that makes DH form in the skin, so if you take a lot of iodine and get a flare, that's a good indicator..

KathiSharpe Apprentice
KathiSharpe
Posted
But it can take some time, so if it doesn't get better right away, don't give up yet. It usually takes me at least a few months of being gluten-free completely for ALL my skin problems to clear up..

Thanks for posting that bit - I was looking for improvement there already (1 week) because I'm seeing HUGE improvements elsewhere. Of course I'm not 100% sure that what I have is actually dh - but having looked at the pictures and symptoms I'm now suspecting it.

captaincrab55 Collaborator
captaincrab55
Posted
Thanks for posting that bit - I was looking for improvement there already (1 week) because I'm seeing HUGE improvements elsewhere. Of course I'm not 100% sure that what I have is actually dh - but having looked at the pictures and symptoms I'm now suspecting it.

Taking Dapsone and going gluten-free improved my quality of life with the second pill... By the end of week one on Dapsone, 95% of the water blisters vanished and my itch was almost gone... The painful Acne showed the same results too... The latter part of week two, I missed a pill... It was a warm day at work and a mild case of the itch started.. I haven't missed a pill since...

One needs to be aware that Dapsone isn't for everyone... One needs a blood lab before starting the drug and weekly labs for a month. Labs go to monthly, 3 months, 6 months and yearly after that if all is well.. Some people with sulpher reactions can't take the drug either...

mysecretcurse Contributor
mysecretcurse
Posted

Yeah, unfortunately for those of us with no health insurance or money, avoiding gluten is the only way.

And also, my skin is the absolute LAST thing to get better after a glutening. Always. It usually goes stomach symptoms, mood symptoms, and then weeks and weeks later, the skin finally clears.

Archived

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

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


  • Member Statistics

    • Total Members
      132,023
    • Most Online (within 30 mins)
      7,748
    Tubbybooboo
    Newest Member
    Tubbybooboo
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

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



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • 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.
    • sleuth
      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

      By sleuth · Posted

      He is not just a psychiatrist.  He is also a neuroscientist.  And yes, I have already read those studies.   I agree with benfotiamine.  This is short term while glutened/inflammation occurs.  As I had already mentioned, these symptoms no longer exist when this phase passes.  And yes, I know that celiac is a disease of malnutrition.  We are working with a naturopath.
×
×
  • 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.