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

How do I know my DH is healing?

flabslapper

Recommended Posts

flabslapper Rookie
flabslapper
Posted

Hello, I've been recently diagnosed with celiac disease, but my affliction is DH. I started getting the rash around February, was diagnosed in May, so I'm lucky it was a quick turn-around, so I've only really been gluten-free for a few weeks.

The information I can't seem to find on my own however is what DH looks like when it's heeling? I only ever find pictures of what it looks like when it's flared up, not when it's healing. 

I'm sure I'm also accidentally gluten-ing myself over the weekends, but I'm just really new to this obviously and adjusting has been a little tough.

Thanks for any advice / info you can give me; in a weird way I'm glad that if I was going to get anything, it's something that has a very supportive community and a wide variety of options and foods that i can still eat. Thanks again.

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

Celiac.com Sponsor (A8-M):


squirmingitch Veteran
squirmingitch
Posted

DH is extremely sensitive to the tiniest little trace of cross contamination. It's imperative that you make sure you get a solid handle on those accidental weekend glutenings. You see, with dh, the antibodies deposit under the skin and they can lay there for long times. They can lay there dormant so to speak ~~ where you don't have an outbreak ~~ & then one day BOOM! they decide to go nuts on you. That's the most crazy, mind blowing, make you nuts thing about dh. With dh, you can have outbreaks when you're not eating gluten OR not have outbreaks when you're eating gluten. In other words, the rash comes & goes at will. It will make you nuts. You can't figure it out, you can't predict it.

I get that you want to know what it looks like when it's healing but I'm trying to let you know that even when the outbreak you're currently experiencing heals, that doesn't necessarily mean you will never get any more outbreaks. OK, for the short answer as to healing, it's kind of self evident. The lesions will scab & depending, you may scratch them back open again & this may happen several times & then one day it stops itching & the place(s) heal often leaving a purple coloration (sometimes white) that may fade to brown/tan & then eventually even that mark will go away. 

flabslapper Rookie
flabslapper
Posted
  • Author

Actually that helps a lot squirmingitch, thank you so much for responding, that makes a lot of sense when you explain it that way, I've read that the rash can just flare up seemingly out of no where, so I've been eliminating everything I can think of, but it's so frustrating when my rash seems to be getting better and then it just flares up again the next week. 

I know I have a long way to go too, I've read it can take as long as 2 years - but it could be worse I know, I don't seem to have the gastro problems (not yet anyway)

Thanks again!

squirmingitch Veteran
squirmingitch
Posted

You're so welcome! 

Honestly, this rash can truly make you think you're losing your mind. Yes, it can take years. It can take a LOT of years --- longer than 2, OR it can take only months. We can only speculate it has to do with how long you actually had celiac but didn't know it & assume that the longer you had it, the antibodies were building up under the skin. They take their sweet time going away too. 

BTW, most of us with dh tend to have fewer, milder gastro symptoms yet we still get the damage to our villi. 60% of the time we test negative on the celiac blood panel and that's because the antibodies are sitting under our skin. 

flabslapper Rookie
flabslapper
Posted
  • Author

Yeah, I tested negative on the biopsy but all my bloodwork came back positive for celiac; I've been reading more forum posts too to try to get a better handle on it, like how iodine can make it worse, or how it's itchier at night, which is comforting to know a lot of people suffer the same way haha

Victoria1234 Experienced
Victoria1234
Posted

I can't recall how long mine took to go away, but it was too long! One day you'll notice it goes flat and purple, a bit like a bruise. Seems like it will stay that way forever as a scar. Then one day it's more skin colored, until it fades comepletely. Took a number of months for me, but I'm super pale.

Certain gluten-free certified foods, like cookies, made the itching, not the lesions, come back.... this happened for a year or two. But it would only last a day. That way I knew the foods that 20ppm was too much for my body. I was very sensitive. It's been 9 years since I went gluten-free and this never happens anymore.

artistsl Enthusiast
artistsl
Posted

It takes weeks, maybe months. The first two pics are days after I stopped eating gluten. The last picture is one week after I stopped eating gluten. Neosporin seems to help alleviate the open wounds. I keep it wrapped in gauze since it's on my hand, to keep from geeked infected. Good luck! It took me about four months to get it to go away completely the first time I stopped eating gluten. 

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

Celiac.com Sponsor (A8-M):


artistsl Enthusiast
artistsl
Posted

Sorry. I can't get the pictures to upload. If you are interested I can send them to your email. Since reading your post I got to thinking about handsoaps and lotions. I have no idea which brands do or do not contain gluten, but I tend to use Eucerin and Dove brands. Has anyone researched which brands to avoid and which can be considered go-to?

flabslapper Rookie
flabslapper
Posted
  • Author

Victoria - Thanks for reply, man last night I was so itchy, and on a spot that hadn't been itchy for months! I'll keep an eye on gluten-free foods too

artistsl - My hand was itchy yesterday and I ended up putting some off-brand neosporin on and it did help, so I'm glad we both had the same idea haha. Also I can't believe I forgot about hand soap! I've checked my shower bar soap (Dove) but for some reason I completely forgot to check the hand soaps here and at work, thanks! Oh and I don't need to see the pictures, I think I'm getting a better handle on what my body is doing now, but thanks!

I've also stopped taking ibuprofin at night as a 'test' and I was itchy as hell like directly at midnight, but that might have been a coincidence so I'll keep going without that, and once a week I would put on that steroid cream I got from the dermatologist to help the really bad itching but I'm stopping that too.

Thanks again everyone, man am I glad this forum exists!

squirmingitch Veteran
squirmingitch
Posted

You might want to be aware of higher iodine foods as well. For instance, noting if seafood makes the rash worse --- also carrageenan aka sea kelp aka sea weed & all the other names it goes by. Foods from the sea are very high in iodine. Iodine often makes the rash flare.

  • 3 weeks later...
flabslapper Rookie
flabslapper
Posted
  • Author

I have another question about DH and figured I'd keep it in my own thread: I'm trying to keep track of all the spots that I have a rash in, and was wondering if it's possible to have new breakouts if (to the best of my abilities) have not ingested gluten, do breakouts just happen or am I still getting gluten'd? 

I should say that I am in process of replacing a lot of the stuff in my kitchen and my bathroom but I live with my girlfriend so getting rid of suspect things is taking longer. Thanks!

squirmingitch Veteran
squirmingitch
Posted

There's the rub. You don't know by judging how the rash acts ..... at least not for a while. The rash can present even when you are strict gluten-free. The rash can go away even if you're eating gluten. You see, the antibodies get deposited under the skin & just sit there like little grenades and those grenades have a mind of their own as to when they will go off. The only way to know you're not getting glutened FOR SURE is to MAKE SURE you're not getting any gluten cc from ANYWHERE. It's a real mind bender. 1st & I have said this 1,000 times ~~~~~ do NOT eat out; not with dh, not for a long, long time, not until you are sure all the little grenades are gone. Otherwise you're playing Russian roulette. DH is sensitive to the tiniest amount of gluten. Yeh, I know it crimps your style but if you want to meet friends or go out with family then BRING YOUR OWN FOOD, order a drink & enjoy the company. Do not eat anything anyone else prepares for you & that includes well meaning & entirely loving friends & family. They don't know all the rules. It will take ages for them to learn all the rules & if they get it wrong, you are the one to pay the price. 

Don't ever touch your mouth unless you've JUST washed your hands. 

flabslapper Rookie
flabslapper
Posted
  • Author

Thanks again squirmingitch, in a way that makes me feel better, at least it might not be something I'm doing wrong, but I'm getting better at being more careful 

squirmingitch Veteran
squirmingitch
Posted

You're welcome and I'm hoping you are one of the lucky ones whose rash resolves quickly. I have to say most do. Months, maybe a year but then some of us can go years.

  • 8 months later...
Maint Newbie
Maint
Posted
On 22/06/2017 at 12:04 PM, flabslapper said:

Victoria - Thanks for reply, man last night I was so itchy, and on a spot that hadn't been itchy for months! I'll keep an eye on gluten-free foods too

artistsl - My hand was itchy yesterday and I ended up putting some off-brand neosporin on and it did help, so I'm glad we both had the same idea haha. Also I can't believe I forgot about hand soap! I've checked my shower bar soap (Dove) but for some reason I completely forgot to check the hand soaps here and at work, thanks! Oh and I don't need to see the pictures, I think I'm getting a better handle on what my body is doing now, but thanks!

I've also stopped taking ibuprofin at night as a 'test' and I was itchy as hell like directly at midnight, but that might have been a coincidence so I'll keep going without that, and once a week I would put on that steroid cream I got from the dermatologist to help the really bad itching but I'm stopping that too.

Thanks again everyone, man am I glad this forum exists!

Hi everyone and anyone who suffers from dh. I am at my wits end with it. Does anyone experience intense burning of the skin so much so that you cant bearing stand it.???

What a hideous condition . Tell me it will go and you can cope with cealiac and dh.

 

Love to all

 

Yvonne

 

squirmingitch Veteran
squirmingitch
Posted

Well Yvonne, we're still alive, so proof that you can cope & the dh will eventually go away. Yes, the burning..... Many have complained about it. I had it. I think it burned the worst on/in my ears. Felt like they were on fire. Ice pack my dear, ice packs.

Archived

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

Go to topic listing

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



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Wheatwacked
      - Wheatwacked replied to GlutenFreeChef's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      12

      Blood Test for Celiac wheat type matters?

      no argument. Never take the pills sold for Nuclear events, except in a nuclear event when instructed to by authorities. Some of these go up to 130 milligrams per pill. 5000 times the strength of the dietary supplement. 130 times the safe upper limit. 130 mg = 130,000 mcg. Dietary supplements like Lugol's Solution and Liquid Iodine are 50 micrograms...
    2. trents
      - trents replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Seeking advice on potential gluten challenge

      Welcome to the celiac.com community, @JudyLou! There are a couple of things you might consider to help you in your decision that would not require you to do a gluten challenge. The first, that is if you have not had this test run already, is to request a "total IGA" test to be run. One of the reasons that celiac blood antibody tests can be negative...
    3. JudyLou
      - JudyLou posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Seeking advice on potential gluten challenge

      Hi there, I’m debating whether to consider a gluten challenge and I’m hoping someone here can help with that decision (so far, none of the doctors have been helpful). I have a history of breaking out in a horrible, burning/itchy somewhat blistering rash about every 8 years. This started when I was in my early 30’s and at that point it started at the ankle...
    4. marzian
      - marzian commented on Scott Adams's article in Diagnosis, Testing & Treatment
      5

      A Future Beyond the Gluten-Free Diet? Scientists Test a New Cell Therapy for Celiac Disease (+Video)

      This is very exciting news. The research lends itself to preventing the immune system in other autoimmune disorders from getting out of sorts. As someone with a compendium of autoimmune disorders I feel a bit of hope.
    5. Jmartes71
      - Jmartes71 posted a topic in Related Issues & Disorders
      0

      Medications

      Hello, just popped in my head to ask this question about medications and celiac? I have always had refurse reaction to meds since I can remember of what little meds my body is able to tolerate. I was taking gabapentin 300mg for a week, in past I believe 150? Any ways it amps me up not able to sleep, though very tired.However I did notice it helped with...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,142
    • Most Online (within 30 mins)
      7,748
    Mark Conway
    Newest Member
    Mark Conway
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • Wheatwacked
      Blood Test for Celiac wheat type matters?

      By Wheatwacked · Posted

      no argument. Never take the pills sold for Nuclear events, except in a nuclear event when instructed to by authorities.  Some of these go up to 130 milligrams per pill. 5000 times the strength of the dietary supplement.  130 times the safe upper limit.  130 mg = 130,000 mcg. Dietary supplements like Lugol's Solution and Liquid Iodine are 50 micrograms per drop.  It takes 20 drops to reach the safe upper limit. In the US the Safe upper limit is 1100 mcg.  In Europe 600 mcg and in Japan 3000 mcg ( 3 mg).
    • trents
      Seeking advice on potential gluten challenge

      By trents · Posted

      Welcome to the celiac.com community, @JudyLou! There are a couple of things you might consider to help you in your decision that would not require you to do a gluten challenge. The first, that is if you have not had this test run already, is to request a "total IGA" test to be run. One of the reasons that celiac blood antibody tests can be negative, apart from not having celiac disease, that is, is because of IGA deficiency. If a person is IGA deficient, they will not respond accurately to the celiac disease blood antibody tests (such as the commonly run TTG-IGA). The total IGA test is designed to check for IGA deficiency. The total IGA test is not a celiac antibody test so I wouldn't think that a gluten challenge is necessary. The second is to have genetic testing done to determine if you have the genetic potential to develop celiac disease. About 30-40% of  the general population have the genetic potential but only about 1% actually develop celiac disease. So, genetic testing cannot be used to diagnose celiac disease but it can be used to rule it out. Those who don't have the genetic potential but still have reaction to gluten would not be diagnosed with celiac disease but with NCGS (Non Celiac Gluten Sensitivity).  Another possibility is that you do have celiac disease but are in remission. We do see this but often it doesn't last.
    • JudyLou
      Seeking advice on potential gluten challenge

      By JudyLou · Posted

      Hi there, I’m debating whether to consider a gluten challenge and I’m hoping someone here can help with that decision (so far, none of the doctors have been helpful). I have a history of breaking out in a horrible, burning/itchy somewhat blistering rash about every 8 years. This started when I was in my early 30’s and at that point it started at the ankles and went about to my knees. Every time I had the rash it would cover more of my body, so my arms and part of my torso were impacted as well, and it was always symmetrical. First I was told it was an allergic reaction to a bug bite. Next I was told it was eczema (after a biopsy of the lesion - not the skin near the lesion) and given a steroid injection (didn’t help). I took myself off of gluten about 3 weeks before seeing an allergist, just to see if it would help (it didn’t in that time period). He thought the rash looked like dermatitis herpetiformis and told me to eat some bread the night before my blood tests, which I did, and the tests came back negative. I’ve since learned from this forum that I needed to be eating gluten daily for at least a month in order to get an accurate test result. I’m grateful to the allergist as he found that 5 mg of doxepin daily will eliminate the rash within about 10 days (previously it lasted for months whether I was eating gluten or not). I have been gluten free for about 25 years as a precaution and recommendation from my doctor, and the pattern of breaking out every 8 years or so remains the same except once I broke out after just one year (was not glutened as far as I know), and now it’s been over 9 years. What’s confusing to me, is that there have been 3 times in the past 2 years when I’ve accidentally eaten gluten, and I haven’t had any reaction at all. Once someone made pancakes (they said they were gluten-free, they were not) and I ate several. I need to decide whether to do a gluten challenge and get another blood test. If I do, are these tests really accurate? I’m also concerned that I could damage my gut in that process if I do have celiac disease. My brother and cousin both had lymphoma so that’s a concern regarding a challenge as well, though there is a lot of cancer in various forms in my family so there may be no gluten connection there. Sorry for the ramble, I’m just doubting the need to remain gluten free if I don’t have any reaction to eating it and haven’t had a positive test (other than testing positive for one of the genes, though it sounds like that’s pretty common). I’d appreciate any thoughts or advice! 
    • Jmartes71
      Medications

      By Jmartes71 · Posted

      Hello, just popped in my head to ask this question about medications and celiac? I have always had refurse reaction to meds since I can remember  of what little meds my body is able to tolerate. I was taking gabapentin 300mg for a week,  in past I believe 150? Any ways it amps me up not able to sleep, though very tired.However I did notice it helped with my bloating sibo belly.I hate that my body is that sensitive and medical doesn't seem to take seriously. Im STILL healing with my skin, eye, and now ms or meningioma ( will know in April  which)and dealing with this limbo nightmare. I did write my name, address ect on the reclamation but im not tech savvy and not sure if went through properly. I called my city representative in Stanislaus County and asked if theres a physical paper i can sign for proclamation for celiac and she had no clue about what I was saying, so I just said I'll go back on website. 
    • Scott Adams
      Blood Test for Celiac wheat type matters?

      By Scott Adams · Posted

      I'm not saying that some celiacs won't need it, but it should be done under a doctor's supervision because it can cause lots of problems in some people.
×
×
  • 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.