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

Understanding Dermatitus Herpetiformis

Guest pugsysmom

By Guest pugsysmom
in Dermatitis Herpetiformis

Recommended Posts

Guest pugsysmom
Guest pugsysmom
Posted

Do you have to stay on dapsone to keep from getting the herpetiformis over and over again? I have been gluten-free for 1.5 years. When I finish a round of dapsone, two or three weeks later the dang stuff comes back and in more and more places. HELP!

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

Celiac.com Sponsor (A8-M):


almostnrn Explorer
almostnrn
Posted

I am not sure what your exact condition is, and right up front you need to know that I've never taken dapsone. I'm also making the assumption that you are completly gluten free. My DH flares when I get gluten in my diet or on my skin via shampoo, lotions, etc. The timing of which I've never been able to really figure out. For the most part it seems that for me it is rather delayed from when I've gotten glutened. But I do realize that everyone reacts differently. Once I went on the gluten-free diet it went away completly. I may randomly get A spot from time to time but its nothing like when I'm eating regular food. I wonder if the dapsone is causing you to have a "rebound" type thing when you go off of it. I personally will not do anything to hinder the DH because it is my warning sign that I've gotten off track with my diet or there is something hidden in a new product that I'm missing . I am hoping others will post on this too as I know some people have a much more severe case than I do so I can only offer advice from my perspective. I hope you can find a solution to your DH problem and find a way to get off of dapsone for good!

gf49erfan Rookie
gf49erfan
Posted

I was on Dapsone for 4 years, until I "woke up" and figured out it was more than a rash, no doctor told me why I had the rash and what it was from, just said to take the pills.

I had it bad, knees, elbows, beltline, buttocks, but dapsone really helped, but I also had digestive problems, but didn't connect the two, so for years I just took dapsone.

In October 2005, after alot of intense research, I determined that my rash, well there was more to it.

Celiac is what I found, I found a good gastro dr. and "told" him what I wanted him to do, and to look for.

endoscopy, and full blood work, well January 30th 2006, I was positively diagnosed with Celiac, as my doctor put it "loaded with it"

I've been gulten free since, and have not taken dapsone at all, have had no flare ups at all, and feeling 110% better then I've felt in a long time

I don't like taking pills so that was part of my reason for my research, and no I don't have to

If you are totally gluten-free , and you were diagnosed with DH, and still have flare ups even while your taking dapsone, maybe it's something more or you need a stronger dosage.

I would try to get off of the dapsone, if at all possible and go gluten-free you'll feel soooo much better!!

teebs in WV Apprentice
teebs in WV
Posted

I have been on Dapsone for a year now. I take 75 mg a day and have tried numerous dosages - anything from one 25mg pill per day to finally taking three 25 mg pills per day (all at once). This seemed to be the magic combination for me - but as you both said everyone is different. I have tried to go off of it a few times and within 2 or 3 days of stopping I start breaking out. I have been gluten-free for a year now and we are very careful about cross-contamination.

Some experts believe that it can take up to 2 years for your skin to become completely free of whatever it is that causes the breakouts. There are a few people on this board that really know alot about this and I am sure they will comment.

Other things such as iodine and ibuprofen can aggravate DH as well. I switched to plain salt instead of iodized, and I only use aspirin for pain relief.

Good luck to you - I hope you are able to determine the right solution for your body.

Tracy

almostnrn Explorer
almostnrn
Posted

When you stop the dapsone and the DH rares its ugly head how long do you wait before starting back on it? I'm just curious if you wait it out a little while (and trust me I KNOW that is easier said than done) if it will start to clear on its own. Also another point I thought about over the weekend is that my dermatoligist told me peroids of high stress can also cause a slight outbreak as well. I have always taken this with a grain of salt because although she is a wonderful, highly regarded MD she also told me to just "take it easy on the wheat....you don't have to quit eating it all together". I guess it just goes to show how much ignorance there is about celiac and DH. I think the point about it taking a long time to completly clear is absolutely on target too...if it is a build up of antibodies in our skin that causes the DH, it would make sense that until that skin can has completly replaced itself without the presence of antibodies we could still have a small flare here and there.

num1habsfan Rising Star
num1habsfan
Posted

I've been on Dapsone for a couple of years now (dont remember when I started exactly). the only days I dont take it is when i'm no nauscious that i'm afraid i wont be able to keep it down (which happens quite often this year). i'm so sensative to dairy and ESPECIALLY gluten that even just the slightest bit of accidental contact will flare up DH. In fact when I feel no effect health-wise from contamination, my skin is always the proof i was in contact (even touching it). I have DH on all of my upper half of the body--from the waste up.

I tested myself this fall/winter to see if I can get away with taking it like maybe once every couple weeks (to see if i dont need it daily) and its gotten so much worse so I'm going back to once a day...

And yes, Dapsone DOES help me hugely. Its definitely improved it and killed that horrible itchy feeling!

~ lisa ~

Ursa Major Collaborator
Ursa Major
Posted

It's too bad some of you seem to need the Dapsone. Please make sure your doctor monitors your liver closely, as Dapsone, especially if taken for an extended time, can cause liver damage.

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

Celiac.com Sponsor (A8-M):


almostnrn Explorer
almostnrn
Posted

I'm so sorry for those of you who can't get your DH to clear, I just can't imagine it. I almost feel bad because mine does go away. Wish I could do something to help

Pegleg Newbie
Pegleg
Posted

I'm in the process of trying to take all wheat products out of my diet. It sure hard though. You seem to crave what you are allergic to. Wheat is in everything. It's pretty much a given that when I eat wheat, the first place it shows is on my face. My nose, 3rd eye spot, chin and fingers turn red and itchy. It goes away after I've stopped eating wheat for a few days, It also makes me puffy. I have scars on my chin from scratching. I do apply olive oil (straight from the bottle) at night. It takes some of the redness away and soothes also.

Archived

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

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


  • Member Statistics

    • Total Members
      131,553
    • Most Online (within 30 mins)
      7,748
    Jennifer CCC
    Newest Member
    Jennifer CCC
    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

    • Scott Adams
      Taken Seriously

      By Scott Adams · Posted

      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Protein or fat?

      By Scott Adams · Posted

      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • 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.
×
×
  • 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.