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Could Sever Acne Really Have Been Mild Dh

elle's mom

By elle's mom
in Dermatitis Herpetiformis

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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.

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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.

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