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

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

shayre

By shayre
in Dermatitis Herpetiformis

Recommended Posts

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?

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

Celiac.com Sponsor (A8-M):


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.

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

Celiac.com Sponsor (A8-M):


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.

Archived

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

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


  • Member Statistics

    • Total Members
      131,545
    • Most Online (within 30 mins)
      7,748
    Jem68
    Newest Member
    Jem68
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
    • Jsingh
      Protein or fat?

      By Jsingh · Posted

      Hi,  I care for my seven year old daughter with Celiac. After watching her for months, I have figured out that she has problem with two kinds of fats- animal fat and cooking oils. It basically makes her intestine sore enough that she feels spasms when she is upset. It only happens on days when she has eaten more fat than her usual every day diet. (Her usual diet has chia seeds, flaxseeds, and avocado/ pumpkin seeds for fat and an occasional chicken breast.) I stopped using cooking oils last year, and when I reintroduced eggs and dairy, both of which I had held off for a few months thinking it was an issue of the protein like some Celiac patients habe mentioned to be the case, she has reacted in the same fashion as she does with excess fats. So now I wonder if her reaction to dairy and eggs is not really because of protein but fat.   I don't really have a question, just wondering if anyone finds this familiar and if it gets better with time.  Thank you. 
    • Chanda Richard
      High Cost of Gluten-Free Foods

      By Chanda Richard · Posted

      Hello, My name is Chanda and you are not the only one that gose through the same things. I have found that what's easiest for me is finding a few meals each week that last. I have such severe reactions to gluten that it shuts my entire body down. I struggle everyday with i can't eat enough it feels like, when I eat more I lose more weight. Make sure that you look at medication, vitamins and shampoo and conditioner also. They have different things that are less expensive at Walmart. 
    • petitojou
      Frequent nausea after gluten-free diet

      By petitojou · Posted

      Thank you so much! I saw some tips around the forum to make a food diary and now that I know that the community also struggles with corn, egg and soy, the puzzle pieces came together! Just yesterday I tried eating eggs and yes, he’s guilty and charged. Those there are my 3 combo nausea troublemakers. I’m going to adjust my diet ☺️ Also thank you for the information about MCAS! I’m from South America and little it’s talked about it in here. It’s honestly such a game changer now for treatment and recovery. I know I’m free from SIBO and Candida since I’ve been tested for it, but I’m still going to make a endoscopy to test for H. Pylori and Eosinophilic esophagitis (EoE). Thank you again!! Have a blessed weekend 🤍
    • knitty kitty
      Unusual bright yellow but odourless discharge

      By knitty kitty · Posted

      Yes, I, too, have osteoporosis from years of malabsorption, too.  Thiamine and magnesium are what keep the calcium in place in the bones.  If one is low in magnesium, boron, selenium, zinc, copper, and other trace minerals, ones bone heath can suffer.  We need more than just calcium and Vitamin D for strong bones.  Riboflavin B 2, Folate B 9 and Pyridoxine B 6 also contribute to bone formation and strength.   Have you had your thyroid checked?  The thyroid is important to bone health as well.  The thyroid uses lots of thiamine, so a poorly functioning thyroid will affect bone heath.  
×
×
  • 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.