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Keratosis Pillaris Skin Rash (Zit-Like), Actually Dh?

shayre

By shayre
in Dermatitis Herpetiformis

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shayre Enthusiast
shayre
Posted

I just got diagnosis with Celiac, but doc knows nothing of the skin rash that I've had for about 5 years. Dermatologist had diagnosed it as Keratosis Pillaris, or something like that. She said that their was unknown cause for it. It started after having a baby, and got worse after my last baby. I noticed that it got better after I started eliminating foods,but it hasn't gone away. It looks like acne, but not acne. It started on the back of my arms, then spread to my belly, thighs and back after the 2nd baby. I read on here about the purple scars, and it does do that...looks similar to acne scars. However, I have had 2-3 times where it will turn into something bigger and fluid filled...kind of shocked me. It can itch a little, but I think that it varies between people.

Now, I do know that it gets better and worse with what I eat, so it has to be celiac related. I had joined a forum where there were lots of people trying to figure out this rash, and how to cure it. No one had any answers, because the dermatologists have no answers. Does this sound familiar to anyone? I am assuming that it has to be some form of DH, since I know that food effects it...and with the occasional boil-type lump. I am also assuming that everyone can be effected a little differently...some worse and some not so bad. Please give me your thoughts? And what is Dapsone, or helps DH?

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cassP Contributor
cassP
Posted

omg... was just on google- looking up Keratosis Pillaris, Atopic Dermatitis, Excema, Folliculitis, etc, etc...

some of those pics SUSPICIOUSLY look a LOT like DH... some are DH for sure..

1st i wanna say-> i hope that you people start posting pics- i am totally tired of going on google & having to see graphic pics of people's nether regions G-Rosss

2nd-> with terms like Atopic, and Idiopathic... and "seem to run in families"- these docs just cant seem to think out of the box & connect certain things to diet & environmental triggers can they?? i think the more we learn about our genes & diet- there doesnt really seem to be a big mystery anymore

3rd-> keep in mind too that docs dont really learn about Gluten & Celiac- i just read an article about a dermatologist who had DH, and then eventually found out she had Celiac-> but that she DIDNT even know what DH was- she wasnt taught about it!!!

ok, sorry, done ranting for now- hope other members can help u out here- im not an expert on the DH.. altho i have something new around my navel- ??? good luck

gwebb Newbie
gwebb
Posted

I just got diagnosis with Celiac, but doc knows nothing of the skin rash that I've had for about 5 years. Dermatologist had diagnosed it as Keratosis Pillaris, or something like that. She said that their was unknown cause for it. It started after having a baby, and got worse after my last baby. I noticed that it got better after I started eliminating foods,but it hasn't gone away. It looks like acne, but not acne. It started on the back of my arms, then spread to my belly, thighs and back after the 2nd baby. I read on here about the purple scars, and it does do that...looks similar to acne scars. However, I have had 2-3 times where it will turn into something bigger and fluid filled...kind of shocked me. It can itch a little, but I think that it varies between people.

Now, I do know that it gets better and worse with what I eat, so it has to be celiac related. I had joined a forum where there were lots of people trying to figure out this rash, and how to cure it. No one had any answers, because the dermatologists have no answers. Does this sound familiar to anyone? I am assuming that it has to be some form of DH, since I know that food effects it...and with the occasional boil-type lump. I am also assuming that everyone can be effected a little differently...some worse and some not so bad. Please give me your thoughts? And what is Dapsone, or helps DH?

I have just recently been diagnosed with Keratosis Pilaris(KP). But I think, I also have something else which I am about to get my Dermo to test for DH, exzma etc. I am 40. The cream that the Derm gave me helped the KP areas on my butt, but not on my arms, legs, back, shoulders etc. The cream just made them worse. The scars that are left on these areas are dark purple, with some of them being there for a year or more. The itch and burn like crazy, no matter what I do and they usually start with a single or double hive like appearance, with that little red dot appearing in the middle of it eventually. Then it takes about two weeks to disappear, with only some leaving the dark purple scar.

I have another Derm appointment in two weeks and I am going to get him to biopsy these spots. From what I understand, KP doesn't itch or burn as much as mine does. And mine isn't as bad as on the internet.

Your posting about KP and DH really caught my eye as this is my first posting, but I have been reading here for ages.

I'm about to go to work and I will post images of my spots when I get home.

mushroom Proficient
mushroom
Posted

I have another Derm appointment in two weeks and I am going to get him to biopsy these spots. From what I understand, KP doesn't itch or burn as much as mine does. And mine isn't as bad as on the internet.

Your posting about KP and DH really caught my eye as this is my first posting, but I have been reading here for ages.

If you have been read along here for a while, then you will know to make sure that the dermatologist takes a biopsy immediately adjacent to the lesion, and not of the lesion itself, right? The antibodies will be found in the skin next to the lesion.

shayre Enthusiast
shayre
Posted
  • Author

I am glad that I'm not the only one. I am curious to see how many people will respond with this issue. Maybe we can all go to the dermatology assoc to inform them of the cause:)

Dixiebell Contributor
Dixiebell
Posted

I have had KP (chicken skin) as long as I can remember (I'm 38) and I don't ever remember burning or itching.(I picked at it quite a bit) My mother says she has it also. My 9 yr old son has it and he never scratches it. Before we went gluten-free he would get these little blistery spots in random places. I also have had a few of the blistery spots and they would burn and itch like crazy.

gwebb Newbie
gwebb
Posted

If you have been read along here for a while, then you will know to make sure that the dermatologist takes a biopsy immediately adjacent to the lesion, and not of the lesion itself, right? The antibodies will be found in the skin next to the lesion.

Yeah, since reading on here and on a board for KP, I understand that they have to biopsy next to the lesions. :) I have had some blood tests and colonoscopy/endoscopy and they all came back negative. This was back in March. These 'other' spots started last year in May.

When the Derma diagnosed my KP, he said that it was due to the chronic dry skin that I've inherited from one of my parents. My mum has chronic exczma. And I have always had dry skin, but not a lot of skin problems. Both of my children now have dry skin too.

It's these lesions now that have me worried and I want to get to the bottom of it. It is after reading this board and researching on the internet, that when I go back to the Derma I am getting to the bottom of this skin condition by having biopsies etc before I start looking at other treatments. I don't need to keep wasting money and time getting to the bottom of it.

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brendab Contributor
brendab
Posted

I have had these for years and they got MUCH worse after the birth of baby #2 11 years ago. They actually have mostly disappeared when I cut out wheat and dairy (maybe a gluten thing?) so now that I am working on going completely gluten-free I wonder if they will completely disappear? My 6 year old son has them bad on his face and his arms, not sure about his legs as my husband bathes him. My 5 month old baby has them already. :(

ravenwoodglass Mentor
ravenwoodglass
Posted

If it itches it isn't KP. Some people do pick at them even though they don't itch, I know I did as I just couldn't stand the bumps. My DS had them all over his chest and trunk but he left them alone. I also have DH that does cause the little blisters but it itches so badly that sometimes the blisters are scratched off basically as they form. Both resolved for myself and my DS gluten free. Mine does flare if I get glutened. I get the KP on my knees but the DH lesions for me can show up pretty much anywhere. As mentioned do make sure that the derm is looking for DH, they biopsy next to the lesion and the lesion needs to be active. There is a specific test they need to do to find the antibodies so make sure the derm is familiar with DH so you don't end up being told you have atopic dermatitis which is IMHO a diagnosis that basically means the same as IBS. In other words we don't know what it is but here's a name for it.

There is also a home test for DH, you would put iodine on your skin and cover it with a bandaid. If you have DH you will produce a rash or blistering where the iodine was applied. If you do have DH be sure to avoid iodine in salt and foods for a bit as that will keep the lesions active. After the antibodies have left the skin you can go back to using iodized salt or eating iodine rich foods if you want.

  • 4 weeks later...
brendab Contributor
brendab
Posted

If it itches it isn't KP. Some people do pick at them even though they don't itch, I know I did as I just couldn't stand the bumps. My DS had them all over his chest and trunk but he left them alone. I also have DH that does cause the little blisters but it itches so badly that sometimes the blisters are scratched off basically as they form. Both resolved for myself and my DS gluten free. Mine does flare if I get glutened. I get the KP on my knees but the DH lesions for me can show up pretty much anywhere. As mentioned do make sure that the derm is looking for DH, they biopsy next to the lesion and the lesion needs to be active. There is a specific test they need to do to find the antibodies so make sure the derm is familiar with DH so you don't end up being told you have atopic dermatitis which is IMHO a diagnosis that basically means the same as IBS. In other words we don't know what it is but here's a name for it.

There is also a home test for DH, you would put iodine on your skin and cover it with a bandaid. If you have DH you will produce a rash or blistering where the iodine was applied. If you do have DH be sure to avoid iodine in salt and foods for a bit as that will keep the lesions active. After the antibodies have left the skin you can go back to using iodized salt or eating iodine rich foods if you want.

Question about the idodine and DH: I've been doing a lot of reading here lately and many people were diagnosed with celiac disease just by having a diagnosis of DH so wouldn't this be an alternative test for celiac disease without the biopsy? Ignornat I am sure :)

Dixiebell Contributor
Dixiebell
Posted

No, not ignorant. Yes. A skin biopsy next to an active lesion to test for DH. If you go ta a derm. be sure they know how to do it and that they will do it. I took my son to see a derm. and he was a goof-ball.

brendab Contributor
brendab
Posted

No, not ignorant. Yes. A skin biopsy next to an active lesion to test for DH. If you go ta a derm. be sure they know how to do it and that they will do it. I took my son to see a derm. and he was a goof-ball.

But wouldn't it be easier to apply iodine to the skin to check for a rash from it rather than the blood test or biopsy?

ravenwoodglass Mentor
ravenwoodglass
Posted

But wouldn't it be easier to apply iodine to the skin to check for a rash from it rather than the blood test or biopsy?

Perhaps but it is not likely to get a doctor derived diagnosis. That was the 'old fashioned' way of testing for DH before the biopsy to look for antibodies. Don't know if some 'old school' doctors might consent to doing this test under their supervision. They would apply and check after a few days at the office.

  • 1 month later...
pinki656 Rookie
pinki656
Posted

although I self diagnosed because of being ignored and treated like a hypochondriac for the past two yrs, i too have lesions that start like acne (and I am an avid picker if im sweating)but turns into lesions that hurt literally.. takes forever to heal ... when I went gluten free (going on about 5-6 wks now) Mine cleared up.. but the purple scars are still very vivid and always have been.. had it on back of my arms as a child, then after childbirth it progressed to front of arms and then to chest and face after giving birth.. when i got sick 2 yrs ago i started breaking out on my behind and a few on my legs..I have deep scars in my face from picking because i couldnt stand the acne like feeling or the scabs...

Dixiebell Contributor
Dixiebell
Posted

although I self diagnosed because of being ignored and treated like a hypochondriac for the past two yrs, i too have lesions that start like acne (and I am an avid picker if im sweating)but turns into lesions that hurt literally.. takes forever to heal ... when I went gluten free (going on about 5-6 wks now) Mine cleared up.. but the purple scars are still very vivid and always have been.. had it on back of my arms as a child, then after childbirth it progressed to front of arms and then to chest and face after giving birth.. when i got sick 2 yrs ago i started breaking out on my behind and a few on my legs..I have deep scars in my face from picking because i couldnt stand the acne like feeling or the scabs...

Your rash sounds like Dermatitis Herpetiformis (DH).

  • 2 weeks later...
dh mom Newbie
dh mom
Posted

I just got diagnosis with Celiac, but doc knows nothing of the skin rash that I've had for about 5 years. Dermatologist had diagnosed it as Keratosis Pillaris, or something like that. She said that their was unknown cause for it. It started after having a baby, and got worse after my last baby. I noticed that it got better after I started eliminating foods,but it hasn't gone away. It looks like acne, but not acne. It started on the back of my arms, then spread to my belly, thighs and back after the 2nd baby. I read on here about the purple scars, and it does do that...looks similar to acne scars. However, I have had 2-3 times where it will turn into something bigger and fluid filled...kind of shocked me. It can itch a little, but I think that it varies between people.

Now, I do know that it gets better and worse with what I eat, so it has to be celiac related. I had joined a forum where there were lots of people trying to figure out this rash, and how to cure it. No one had any answers, because the dermatologists have no answers. Does this sound familiar to anyone? I am assuming that it has to be some form of DH, since I know that food effects it...and with the occasional boil-type lump. I am also assuming that everyone can be effected a little differently...some worse and some not so bad. Please give me your thoughts? And what is Dapsone, or helps DH?

hi,

you probably have the anwsers by now, but KP is definetly NOT DH. DH has pustiules which are liquid filled and you would litally be scratching yourself awake at night and wind up bloody. It is extremely itchy. KP is not, or if it is, it is itcy on a level '1' not '10'. KP is also not runny liquidy pustules, DH is. When DH scabs over, you look as if you have road rash, it's not just a couple of little scabs. Our daughter has KP, our son has DH.

DH and Celiac: You may have one without the other. You may have DH, which would strike in early 20's, however, in some people, it goes into 'honeymoon' phase, and they can eat wheat again. I want to stress here, that they may only resume eating wheat if they were NOT CELIAC. If the diagnosis is celiac, you're done. Off wheat forever. If it is just DH, you may be one of the lucky few, and be able to eat wheat again.

Dapson: Dapson is a drug, which is commonly given to DH patients. Our son was on it very briefly. He had a reaction in his liver, which caused another rash. He wound up on Sulfapyridine, which is made by Jacobus pharmacuticals. It is given out for free as a test trial drug, only because there is no real demand for it in the market place. It is actually an old drug, and is still widely used in the uk. DO NOT LET YOUR DOC CONVINCE YOU TO GO ON STERIODS. THEY CAUSE MANY PROBLEMS. You only need any drug until your intestines repair themselves and then you may go off unless you get glutenized. To get sulfapyridine, your doc needs to contact jacobs and request it for you. it will be shipped to the doc's office wehre you pick it up for free. hope this helps.

Dixiebell Contributor
Dixiebell
Posted

Actually, DH (dermatitis herpetiformis) is the skin manifestation of celiac disease. If you have DH, you have celiac.

ravenwoodglass Mentor
ravenwoodglass
Posted

DH and Celiac: You may have one without the other. You may have DH, which would strike in early 20's, however, in some people, it goes into 'honeymoon' phase, and they can eat wheat again. I want to stress here, that they may only resume eating wheat if they were NOT CELIAC. If the diagnosis is celiac, you're done. Off wheat forever. If it is just DH, you may be one of the lucky few, and be able to eat wheat again.

If you have DH you have celiac even if you don't have gut symptoms. You can not safely eat wheat again at any point in time. DH can also show up at any age from infancy to old age.

summerteeth Enthusiast
summerteeth
Posted

RE: Keratosis Pilaris - my derm actually told me that KP can itch because it manifests through dry skin blocking the follicule/pore.

Not sure if that is true or not, but for me, these bumps itch really bad & I end up with scars.

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