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 Long Before Relief

sawgrass

By sawgrass
in Dermatitis Herpetiformis

Recommended Posts

sawgrass Rookie
sawgrass
Posted

I have recently found I have DH.

Can anyone tell me how long before some relief is noticed?

I have been gluten-free for two weeks and not much has changed.

Trying to avoid Dapsone. Sawgrass

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

Celiac.com Sponsor (A8-M):


Guest nini
Guest nini
Posted

I wasn't dx'ed with DH, I was dx'ed with Celiac, but I did have rashes all over my face and arms... I would say that I started to notice an improvement within 3 or 4 weeks, BUT didn't really START feeling better or notice the rash was gone until 6 months into the diet. I don't know much about Dapsone, so can't help you there, I would just say, hang in there with the diet and you will start to notice a difference, just give it time.

Ursa Major Collaborator
Ursa Major
Posted

Unfortunately, the DH is caused by gliadin deposits under the skin, and can take up to 2 years to clear. Meaning, that for that amount of time you can still get outbreaks of the rash. For most people it clears up within a year, though, while for some rare people it can take up to five years.

Mine started getting better within a couple of months, but after now eight months still get outbreaks (especially after being glutened).

So, don't measure how well you do on the gluten-free diet by how much your rash has cleared up. It may not for quite a while. Keep plugging away and don't get discouraged, it will get better eventually.

Dapsone supposedly helps, but is very hard on the liver, and you would have to be very closely monitored being on it. Personally, I wouldn't even consider it. But then, my DH isn't nearly as bad as it could be, just annoying (fortunately, I rarely get so itchy that I can't sleep at night).

lindalee Enthusiast
lindalee
Posted
I have recently found I have DH.

Can anyone tell me how long before some relief is noticed?

I have been gluten-free for two weeks and not much has changed.

Trying to avoid Dapsone. Sawgrass

I am assuming that I had the DH . My stomach broke out and itched terrible which actually got me to think I really didn't outgrow celiac disease. Thank God I went gluten-free because I was so tired. All the research I have done say nothing about the lower stomach area for a rash. Has anyone had it there???? I listen to Dr. Becker on "Your Health" and ordered some oil of oregano from him and it has helped clear it up . I also am taking his probiotics. I was totally miserable with the itch. I still get a little itch but almost gone. I don't take any medicine. I am also taking milk thistle to help my liver get rid of the toxins. When I was diagnosed when I was a baby at John Hopkins they told my mom to keep me gluten free for 2 years. Now I know it is for life. lindalee

tarnalberry Community Regular
tarnalberry
Posted

DH can take quite a while to clear up, because it's caused by deposits under the skin. Making sure to stay away from *all* gluten (including those pesky hidden sources and cross contamination) permanently, and drastically limiting iodine (an element in the reaction that forms the deposits) until it heals, is about all you can do.

KaitiUSA Enthusiast
KaitiUSA
Posted

With everyone the time when they see a difference is different. I know I felt better after about 3 months but really didn't get back to normal for about 8 months or so. Some people see a difference pretty quickly though. Now, I know for DH it can take time to clear up so hang in there. Also, you need to watch gluten in products as mentioned before because that will make DH appear.

sawgrass Rookie
sawgrass
Posted
  • Author
With everyone the time when they see a difference is different. I know I felt better after about 3 months but really didn't get back to normal for about 8 months or so. Some people see a difference pretty quickly though. Now, I know for DH it can take time to clear up so hang in there. Also, you need to watch gluten in products as mentioned before because that will make DH appear.

Thanks to everyone :D For the info, and support!!!

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

Celiac.com Sponsor (A8-M):


Pegster Apprentice
Pegster
Posted

Sawgrass: I was lucky in that my DH cleared up almost immediately. Unfortunately I get little random outbreaks every now and then, but rarely is it really terrible. I have been gluten-free for over two years now.

Lindalee: I have had dh on my lower stomach, particularly on the sides around where the elastic is on bikini underwear. It's miserable to get it there because it's irritated constantly by my clothes. I use steroid ointments to calm it down.

Franceen Explorer
Franceen
Posted

My DH was absolutely AWFUL and EVERYWHERE. I had it on my belly halfway between crotch line and belly button. I have scars there. I also got it at the underpants line/crease. Awful for the reasons noted!

I had it bad on shins, forearms, back (upper and lower), shoulders, upper arms near armpits and thighs.

I've been gluten free since December. Took Dapsone for 4 months until I nearly died from it (Sensitivity reaction with liver and horrible and different peeling-skin rash).

I had to take Prednisone to help stop the itching. Now I am oral meds free, gluten-free and only have minor new rash on hands/wrists (probabaly contact dermatitis from soaps, but maybe DH). My shins are still healing - but I am MUCH MUCH better. My doctor gave me a very very expensive (but insurance pays) NEW steroid FOAM (it's Betamethasone which doesn't work in cream form for me). This stuff is called "Luxiq" and it is really helping clear up the remaining rash because it stops the itch and I don't scratch as much and get scabs, etc.

But the NEW rash has drastically diminished. I'm keeping my fingers crossed the the gluten-free really keeps working. One of those "famous Dr's" (the one that's an expert on DH) has a website and says on it that after on has really been gluten-free enough for the rash to be totally gone, small amount of accidental glutening should not cause a flare. Also after rash is gone, iodine ceases to be a problem. We'll see!

Pegster Apprentice
Pegster
Posted

Franceen I feel your pain (and itch)! I'm glad you're clearing up. It's a miserable feeling to itch all day and night long.

sawgrass Rookie
sawgrass
Posted
  • Author
Franceen I feel your pain (and itch)! I'm glad you're clearing up. It's a miserable feeling to itch all day and night long.

This itch is driving me crazy.Today is the worst so far. I am not sure if I ate some gluten or if this is normal.

I am trying to avoid Dapsone and have been gluten-free about a month.Anyone have a suggestion??? Jeff

Pegster Apprentice
Pegster
Posted

My feeling is that dh can actually get worse for a while as the body is ridding itself of the gluten. Also, as you go gluten free, smaller and smaller amounts of gluten will cause a reaction. Watch for anti-inflammotory drugs- they can cause flare ups for some reason even if they are gluten-free. Also iodine can be a culprit. Now as for relief...I KNOW I will get some negative responses from this but I use Aveeno oatmeal baths when I'm really bad. Yes, I know oats are iffy. I never eat them, but soaking in the bath makes me feel so much better when I have a flare up. It calms the itch and keeps me from going crazy and I've never had to use Dapsone. So if you're really suffering, you might consider it. :blink:

Franceen Explorer
Franceen
Posted

Yes, mine did get worse before it got better.

The steroid foam ("Luxiq") that my Dr. gave me is the FIRST and ONLY steroid cream that helps the itch. It is VERY expensive, but my insurance is paying for it. (It is over $150 for one can which lasts me about 10 days). That's drug company robbery for sure, but it WORKS.

I don't seem to have a "flare problem" with NSAIDs - and Ibuprophen really stop my itch for about 4 hours, so when DH was at its worst I took that about 3 times a day.

Soaking in a bath (no matter what with) always helps me in the short term but hurts in the long run because it is very drying.

I did not know that Dairy had Iodine! That could be a problem (or could have BEEN) because I eat/drink a lot of dairy.

I have ONE spot of horrible itch left and some contact dermatits on my hands. That is from putting them in water too much and with dish soap. Hard to control. I also react to the soap in public restrooms and to the hand sanitizers and the water makes it worse.

Best of luck to you. Try NOT to SCRATCH (it makes it spread and makes it itch MORE, and gives you scabs and scars! I know, been there did that. And the "scar gels" make me break out again!

Franceen

Archived

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

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


  • Member Statistics

    • Total Members
      131,554
    • Most Online (within 30 mins)
      7,748
    Becky 0163
    Newest Member
    Becky 0163
    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.