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

Home Remedies

positivenrgfairy

By positivenrgfairy
in Dermatitis Herpetiformis

Recommended Posts

positivenrgfairy Apprentice
positivenrgfairy
Posted

The last few times I've had a break out of this stuff that I believe to be DH, I had to get a cortisone shot to get rid of it. Does anything heal it? nothing else seems to be working and I don't have the $$ for another shot.

any advice is greatly appreciated!!

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

Have you checked all your toiletries and cosmetics for gluten? You need to figure out where the gluten is sneaking in. The only real 'cure' for DH is being really strict with the diet. Whenever you get any gluten it will reactivate the antibodies in the skin and it takes a long time for those antibodies to go away. I have been gluten-free now for 8 years, the first couple years a DH outbreak was one of the first signs I had been glutened but after that, once the antibodies had decreased the outbreaks started coming later in the glutening and now when I get glutened I only get at most one or two small sores that heal quickly. Unfortunately there are no real home remedies other than being strict with the diet.

  • 2 weeks later...
Kate S. Newbie
Kate S.
Posted

I would also love to know if there is anything you can do at home to ease the rash once you've had an outbreak!

I was diagnosed about five and a half months ago, and it seems like no matter how hard I try, I keep getting very painful outbreaks. I've done my best to eliminate gluten from my diet, as well as all my personal care products, but nothing seems to work completely. I'm afraid of going on Dapsone, as I'm already anemic and have read quite a few horror stories about the side effects.

Is there anything else we can do?

I would truly appreciate any help. (At this point, I'm getting a little desperate!)

ravenwoodglass Mentor
ravenwoodglass
Posted

I would also love to know if there is anything you can do at home to ease the rash once you've had an outbreak!

I was diagnosed about five and a half months ago, and it seems like no matter how hard I try, I keep getting very painful outbreaks. I've done my best to eliminate gluten from my diet, as well as all my personal care products, but nothing seems to work completely. I'm afraid of going on Dapsone, as I'm already anemic and have read quite a few horror stories about the side effects.

Is there anything else we can do?

I would truly appreciate any help. (At this point, I'm getting a little desperate!)

Are you going with a pretty much whole unprocessed diet? Have you checked all meds and supplements? Meds need to be checked at each refill if they are generic and supplements can be labeled gluten-free even if they have wheat or barley grass. Do you have a significant other that eats or drinks gluten items? If you do have them throughly brush their teeth before any kissing. Do you consume distilled gluten grains in alcohol or vinegar? If you do drop them for a bit and see if it helps. Most of us will not react to them but some of us do. It takes a long time for the antibodies to leave the skin and new outbreaks are telling you that something is getting you somewhere.

Kate S. Newbie
Kate S.
Posted

Are you going with a pretty much whole unprocessed diet? Have you checked all meds and supplements? Meds need to be checked at each refill if they are generic and supplements can be labeled gluten-free even if they have wheat or barley grass. Do you have a significant other that eats or drinks gluten items? If you do have them throughly brush their teeth before any kissing. Do you consume distilled gluten grains in alcohol or vinegar? If you do drop them for a bit and see if it helps. Most of us will not react to them but some of us do. It takes a long time for the antibodies to leave the skin and new outbreaks are telling you that something is getting you somewhere.

Thank you for your help!

I agree: With new outbreaks, I have to be getting glutened by something. Things seemed to be clearing up (I had a huge outbreak on my face from Christmastime), but just last week, I had an outbreak covering my whole body. :( I was so close! Anyway, to finally figure out what I'm doing wrong, I started a dairy- and egg-free, unprocessed diet. (As far as I know, I don't have a problem with dairy and egg, but I read that you can have other sensitivities you didn't realize that make the healing process harder.) I have also completely eliminated iodine. Basically, all I'm eating is brown rice cooked with water, fruits, vegetables, and almonds and walnuts, which according to their packages were processed in a gluten-free facility.

I don't take any medications, and I switched all my vitamins/supplements to Country Life brand, as the entire line is certified gluten-free by the GFCO. I didn't know these things could be labeled gluten-free and still contain wheat or barley grass?! Isn't that infuriating!

I don't have a significant other, don't drink, and with this new diet, no longer have vinegar. I really hope this elimination diet helps because I love food (and absolutely hate it) and these rashes are so itchy and painful. I'm losing my mind!

Is there any way the heal the rashes faster once you get them? They take so long to go away!

  • 2 weeks later...
janellerenee Newbie
janellerenee
Posted

I would also love to know if there is anything you can do at home to ease the rash once you've had an outbreak!

I was diagnosed about five and a half months ago, and it seems like no matter how hard I try, I keep getting very painful outbreaks. I've done my best to eliminate gluten from my diet, as well as all my personal care products, but nothing seems to work completely. I'm afraid of going on Dapsone, as I'm already anemic and have read quite a few horror stories about the side effects.

Is there anything else we can do?

I would truly appreciate any help. (At this point, I'm getting a little desperate!)

I like Weleda Calendula Baby cream and band-aids to prevent picking and help healing. It took my body awhile to become healthy and for my skin to truly improve even after I stopped eating gluten. Lowering refined sugar and increasing whole foods has made a huge difference in my skin. Gluten is in so much that I try to cook everything I eat and avoid restaurants. I try to cook with real garlic and onions and am very careful about flavor/spice mixes. I know you're tired with the anemia but the more you work at cooking and eating pure food the stronger you'll get. I only use honey as a sweetener. If there is any question in your mind as to whether something has gluten I suggest you just avoid it.

rdunbar Explorer
rdunbar
Posted

the Dh which i've been suffering from for years finally got better recently when I cut out dairy from my diet. apparantly just a little in my tea was enough to keep it going. Also I was drinking an Amazake rice beverage that says gluten-free, but I found out that xantham gum, which is an ingrediant, is pretty much corn syrup. I cut this out and my Dh is at least 50% better, and as far as itchiness, is even more improved. i really thought that it would never get better. I have been gluten-free for @ 3 years, and my Dh was getting worse the last 6 months or so. Goes to show that you can't be too vigilant when it comes to making sure you don't get exposed AT ALL. I'm feeling really encouraged that it will continue to get better, Dh has really been making my life miserable for so long. I'm so glad to discover this forum, and to learn that there is help and support out there when i've been alone with all these problems and obstacles for so long. If you are doing any dairy, try going without it and see what happens.

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

Celiac.com Sponsor (A8-M):


WheatChef Apprentice
WheatChef
Posted

Most of the papers I've read in regards to how soon the gluten free diet has it's major effect on the presence and severity of DH start at the 6-12 months mark. Keep in mind it has to do with your immune systems reaction and if left alone is quite slow to clear up. Since this is an IgA reaction additional food allergies could potentially exacerbate it as well.

I have aloe vera plants in my yard that I gel every few days and it helps a little with the itching. I would not recommend the store bought aloe vera for this cause I have heard the urea in it can just aggravate this particular itching.

(Writing this at 3 in the morning because my DH is itching like hell and I refuse to go on Dapsone)

  • 2 weeks later...
Kate S. Newbie
Kate S.
Posted

Thank you so much for all of your help!

I'm finally starting to feel better after having my worst outbreak ever. (I accidentally ingested a little gluten, and boy, did I pay for it! Don't you just hate it when you know you've messed up, and there is nothing you can do except wait to see how bad the rash is going to be. Ugh)

I will definitely go get some Weleda Calendula Baby Cream and an aloe plant. (I'm not sure why, but I get welts whenever I use band-aids now.)

WheatChef, I know the itching is completely miserable, but know that you are not alone!

GFinDC Veteran
GFinDC
Posted

I don't have DH myself. But I do take DPP-IV (DPP-4) if I think I may get some gluten somehow. DPP-IV helps break down the gliaden protein. There is another enzyme called AN-PEP that I haven't tried. AN-PEP is supposed to work better in combination with DPP-IV.

Anyway, I don't know if these enzymes would help with DH symptoms or prevent outbreaks.

  • 1 month later...
JAMR Newbie
JAMR
Posted

I find the herb sasparillo works well to ease the skin itch as this is a skin and blood cleanser. I use pawpaw ointment and calendula to treat my skin where it itches. For general skin dryness I use an olive oil base with jojoba oil. For hair wash I use henna wax conditioner and johnsons ph balanced body wash, deodorant a tea tree derivative as I tend to react to most normal toiletries. Overall best though is gluten avoidance to improve my skin.I avoid using any steroid based ointments given the long term effects.

Glamour Explorer
Glamour
Posted

Interesting about urea being aggravating - it is in a lot of lotions for dry skin.

RONNY C Newbie
RONNY C
Posted

The last few times I've had a break out of this stuff that I believe to be DH, I had to get a cortisone shot to get rid of it. Does anything heal it? nothing else seems to be working and I don't have the $$ for another shot.

any advice is greatly appreciated!!

I WAS JUST DIAGNOSED WITH THE DREADED (GLUTON) CILIAC DESEASE...AFTER GOING TO THE DOC WITH THIS CRAZY RASH.THE DOC WANTED ME TO TAKE A NASTY DRUG THAT MADE ME VERY SICK..SO I STOPPED IT AFTER 1 PILL.IAM DOING WELL ON THE DIET CHANGE.BUT BEING ALSO DIAGNOSED WITH IC ...I HAVE A DOUBLE WAMMY.AS FAR AS THE RASH...I HAVE SOME CREAM...BUT I FIND NOXEMA MEDICATED CREAM HELPS WITH THE ITCH.IAM PRAying for total deliverance from this nasty stuff.FUNNY HOW LIFE GO'S..IVE PROBABLY HAD THIS CONDITION ALL MY LIFE AND @ 60 YEARS OLD WE FIND IT ..THE BATTLE RAGES ON ...KEEP LOOKING UP! RC

RONNY C Newbie
RONNY C
Posted

I would also love to know if there is anything you can do at home to ease the rash once you've had an outbreak!

I was diagnosed about five and a half months ago, and it seems like no matter how hard I try, I keep getting very painful outbreaks. I've done my best to eliminate gluten from my diet, as well as all my personal care products, but nothing seems to work completely. I'm afraid of going on Dapsone, as I'm already anemic and have read quite a few horror stories about the side effects.

Is there anything else we can do?

I would truly appreciate any help. (At this point, I'm getting a little desperate!)

I TRIED DAPSONE ...ONE PILL...I HAD A HEADACH FOR 36 HOURS ,UNABLE TO CONSENTRATE,BLURED VISION, STOMACK ACK... BAD STUFF....AND THE BLOOD TEST SHOWED I COULD TAKE IT ...NO THANKX..I HAVE FOUND NOXEMA MEDICATED HELPS WITH THE ITCH.RC

Archived

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

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


  • Member Statistics

    • Total Members
      131,557
    • Most Online (within 30 mins)
      7,748
    kghorne3
    Newest Member
    kghorne3
    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.