Jump to content

  • You are not alone. Join Celiac.com for trusted gluten-free answers and forum support.



  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

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

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



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. RMJ
      - RMJ replied to cristiana's topic in Related Issues & Disorders
      2

      Low iron/high normal haemoglobin

      Yes it matters. Hemoglobin isn’t the only molecule in your body that needs iron. Here are several articles on non-anemic iron deficiency: Non-anaemic iron deficiency https://www.thebloodproject.com/non-anemic-iron-deficiency-naid/ Can you be iron deficient without anemia
    2. Aretaeus Cappadocia
      - Aretaeus Cappadocia replied to cristiana's topic in Related Issues & Disorders
      2

      Low iron/high normal haemoglobin

      Not sure what you mean by "poor iron levels" if 30 is normal (upper end of normal range) and you are 29. (at least, that's how I read your post. Seems to me that your iron (ferritin) is normal, whereas before it was too high (40). At any rate, your post made me curious, so I copy pasted "Does it actually matters if my iron levels are poor, if my hemoglobin...
    3. cristiana
      - cristiana posted a topic in Related Issues & Disorders
      2

      Low iron/high normal haemoglobin

      Hello All I think I started a thread on this subject some time ago, but now can't find it. Or possibly it was someone else's thread that I hijacked - and that's why I can't find it! Anyway, I have a rather complicated issue with iron and I'm wondering what to do about it. Or even if it matters. Pre-menopause, when I was first diagnosed with...
    4. Scott Adams
      - Scott Adams replied to JForman's topic in Coping with Celiac Disease
      11

      7yo struggling!

      This would definitely be an interesting study. We did an article on this a while back:
    5. Scott Adams
      50

      Celiac Disease Treatment and Continuing Symptoms

  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,170
    • Most Online (within 30 mins)
      10,442
    yvonne jacobs
    Newest Member
    yvonne jacobs
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • RMJ
      Low iron/high normal haemoglobin

      By RMJ · Posted

      Yes it matters.  Hemoglobin isn’t the only molecule in your body that needs iron.  Here are several articles on non-anemic iron deficiency: Non-anaemic iron deficiency https://www.thebloodproject.com/non-anemic-iron-deficiency-naid/ Can you be iron deficient without anemia
    • Aretaeus Cappadocia
      Low iron/high normal haemoglobin

      By Aretaeus Cappadocia · Posted

      Not sure what you mean by "poor iron levels" if 30 is normal (upper end of normal range) and you are 29. (at least, that's how I read your post. Seems to me that your iron (ferritin) is normal, whereas before it was too high (40). At any rate, your post made me curious, so I copy pasted "Does it actually matters if my iron levels are poor, if my hemoglobin is normal" into the google search bar. According to Dr google, it does matter and they had a lot to say about it.
    • cristiana
      Low iron/high normal haemoglobin

      By cristiana · Posted

      Hello All I think I started a thread on this subject some time ago, but now can't find it.  Or possibly it was someone else's thread that I hijacked - and that's why I can't find it! Anyway, I have a rather complicated issue with iron and I'm wondering what to do about it.  Or even if it matters. Pre-menopause, when I was first diagnosed with coeliac,  my ferritin levels were dreadful and I had to supplement.  It soon became apparent that I had to stop, as once my iron anemia cleared up, my hemoglobin levels reached high normal, verging on a condition known as polycythemia.   High normal in my lab is 15.5 for women, and my level has hovered between 15 and 15.5 The highest my ferritin levels have ever been is 40 (30 being normal) since I started my gluten-free journey - I reached that level about three years ago., about a year post menopause.  18 months later my ferritin had gone down to 29, which I think I can explain because I've been avoiding red meat.  This was a conscious decision as I have  discovered that I can keep my hemoglobin levels at safe levels so long as I don't consume too much iron.  My gastroenterologist also told me not to supplement it.     I have recently had a colonoscopy and have done a FIT test to detect bleeding, both came back normal.  So I feel that the reduced iron consumption is probably the reason for this new deficiency.  But I have two questions: A. Does it actually matters if my iron levels are poor, if my hemoglobin is normal?  (I do feel a bit tired, but surely if my hemoglobin levels are normal I shouldn't?) B. Would my last TTG blood result of 10 (cut off point for normal levels at my lab)  be affecting my absorption of iron? Thanks! Cristinaa  
    • Scott Adams
      7yo struggling!

      By Scott Adams · Posted

      This would definitely be an interesting study. We did an article on this a while back:  
    • Scott Adams
      Fiber-Metabolizing Bacteria Could Boost Gut Health in Celiac Disease

      By Scott Adams · Posted

      We recently posted a summary here:  
×
×
  • Create New...