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

Dh Relief


jobys tutu

Recommended Posts

jobys tutu Newbie

I was diagnosed with DH a a few years ago and, with the exception unintentional ingestion, maintain a gluten free diet. The main culprit for recent DH flare-ups seem to be various dietary supplements I've been trying to combat fatigue and a very slow metabolism. Since I'm not on Dapsone on a regular basis anymore, I was searching for any type of relief during a recent outbreak and found that a really cold ice pack helped me weather the outbreak. I had to leave the ice pack on for a few hours, but it's so worth it. I hope this helps someone else.

  • 3 weeks later...

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



Celiac.com Sponsor (A8-M):



Lisa16 Collaborator

I have found two rather unexpected things help me. I discovered them because my outbreaks were misdiagnosed as shingles (three times!) so I treated them like shingles.

The first thing was "abreva" in the little OTC tubes. It is a product for cold sores. It is a little expensive, but for some reason it worked for me. It appears to make the blister shrink. It also seems to help with the itch/pain. Of course, using it depends on where the outbreak is (I think it would not be so good for fingers, say). It seems to be similar to dapsome in effect-- maybe a related compound? I have never tried the spray. Kind of bizarre.

The second thing is carmex in the little pots with the yellow lid. It is formulated for cold sores, but again, for some odd reason, it really seems to make me more comfortable. It is a little stickier, so you could put it on fingers or toes and then put a bandaid or something to keep it in place.

For what it's worth.... hope this helps somebody. I now keep these thing on hand, just in case.

Lisa

  • 2 months later...
linuxprincess Rookie

I have found that tea tree oil helps quite a bit with me. Discovered this inadvertently when we bought some tea tree oil bath soak and it really helped. I can normally barely sit in a tub of hot water with out it making me itch, but the tea tree seems to help. My sister uses straight tea bags on her areas. She makes a cup or a pot, whatever and uses the left over wet leaves for her rash areas. She saw improvement.

Cold packs help me tremendously also. The carmex / abreva connection sounds like it might be worth checking out as they are intended to treat blisters and I could see the possible help from them.

  • 1 month later...
ljmaine Newbie
I was diagnosed with DH a a few years ago and, with the exception unintentional ingestion, maintain a gluten free diet. The main culprit for recent DH flare-ups seem to be various dietary supplements I've been trying to combat fatigue and a very slow metabolism. Since I'm not on Dapsone on a regular basis anymore, I was searching for any type of relief during a recent outbreak and found that a really cold ice pack helped me weather the outbreak. I had to leave the ice pack on for a few hours, but it's so worth it. I hope this helps someone else.

I am new to this dont know if i will get right but i have outbreaks on my right foot and both hands it takes a long time to heal. Accidentily found that purell hand sanitizer works really well to stop the itch and seems to make the healing faster.

purple Community Regular

I read many pages on here just yesterday and made a bunch of notes. All the tips given above are new to what I read, so try them too. Here is a list.

No Dapsone, its not worth it, bad side effects

Stay away from iodine, table salt, sea food, salmon

No NSAIDS

Possibly eliminate dairy

take potassium

cortisone cream may help

>>>moistened black tea bags helped many people<<<

avoid Applebees and Arby's

bathe in bath salts (without iodine)

cold shower or cool bath helps

Calamine lotion helps

ice packs help

don't eat too much fruit

check your hair care products

stay away from salty chips

dairy can have high levels of iodine so use organic products

there is iodine in thyroid meds

iodine and gluten can flare it up

Hope some of this helps you.

I would try the tea bags and ice packs and those previous tips too. I would suggest rinsing your canned veggies like beans to remove the salt.

  • 1 month later...
rmducote Apprentice
I read many pages on here just yesterday and made a bunch of notes. All the tips given above are new to what I read, so try them too. Here is a list.

No Dapsone, its not worth it, bad side effects

Stay away from iodine, table salt, sea food, salmon

No NSAIDS

Possibly eliminate dairy

take potassium

cortisone cream may help

>>>moistened black tea bags helped many people<<<

avoid Applebees and Arby's

bathe in bath salts (without iodine)

cold shower or cool bath helps

Calamine lotion helps

ice packs help

don't eat too much fruit

check your hair care products

stay away from salty chips

dairy can have high levels of iodine so use organic products

there is iodine in thyroid meds

iodine and gluten can flare it up

Hope some of this helps you.

I would try the tea bags and ice packs and those previous tips too. I would suggest rinsing your canned veggies like beans to remove the salt.

How does salt effect? my hubby has to eat gluten free but loves salty corn chips. does this make breakouts worse?
jitters Apprentice

My DH is always worse in the mornings. I usually get up and hold a cold pop can for awhile. It helps a lot and by the time its warmed up a little it doesn't itch any more. I use ice packs as well, but when I'm in a hurry and just want to grab something to help a cold can works wonders for me! :)


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



Celiac.com Sponsor (A8-M):



  • 3 weeks later...
Mims Newbie

I was diagnosed June 1...so I am really new to Celiac, ...but definitely not new to the rash.

Having fought this rash, on back, neck, arms, wrists, hand, legs, and knees I can tell you that lots of things make it worse. I have had it so bad on my neck and head that I could not even brush my hair. Some mornings, just turning my head would have blood running down my neck and back. For years I did not own a shirt that was not covered in bloodly stains. Once the flare began, it could be days (weeks, months, years) before it would calm down. Immediately following my diagnosis and I began my gluten-free diet, there was an immense improvement.

Since then I have found that Advil and Tylenol will cause a flare up in a matter of hours. Being glutened will also cause a quick and nasty flare-up.

But a few years ago a doctor had given me a sample of OLUX. It is a foam which is great because a little goes a long way....Stings like crazy, especially on recently scratched lesions. But within moments, the itch stops - completely!!!! Ending the itch torment would be good enough for me, but it actually heals the lesions. It dries them up, stops the oozing, and helps with the size of the actual lesions. It doesn't happen over night, but it does heal them and in the meantime it does control the maddening oozing and itch. It is greaseless and odorless so you don't stain your clothing. There are two formulas - one can is purple the other green. By mistake the doctor wrote the script for the green formula, but it did not work for my rash. Go with the purple. Everyone out there should ask their doctors for a prescription for this stuff. It is primarily used to treat "contact dermatitis" and other "allergy rashes" but as they say - Couldn't hurt to give it a try....you never know... As far as I know there are no serious side effects or anything and it just might help someone out there.

Remember that Viagra was initially used to treat a specific heart condition....and we all know where that went!

I also figured out on my own that iodine was a major cause of reflux.... Quite by accident, I found that once I switched to iodine free salt, and sea salt (in everything-even packaged foods- check the label use only products that say sea salt in the ingredient list) there was a great improvement in the reflux and the rash!

I am also Lactose Intolerant....three weeks ago I discovered Digestive Advantage...a once a day pill to prevent dairy symptoms (nasty bellyache, gas, bathroom trips etc.)... Well this stuff is a "Magic Potion"...Oh, to be normal again (as normal as one can get while being Celiac)... I don't know the connection, but the rash has calmed down considerably too. I have been glutened twice since the first of the month (cc issues), but the rash flares were just not as nasty as usual...so I am thinking there might be a connection to the dairy issues too.

Yet it still does not really ever go away.............

I have not heard of the connection with thyroid medication until I read it tonight - and wonder if there is any information around on that school of thought...

Talking to my doctor regarding that issue should be exhausting at best....she said I couldn't be Celiac because I was too tall... I insisted on testing, and wow, I guess I am not too tall after all............

Archived

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

  • 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. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      how much gluten do I need to eat before blood tests?

    2. - catnapt posted a topic in Related Issues & Disorders
      0

      anyone here diagnosed with a PARAthyroid disorder? (NOT the thyroid) the calcium controlling glands

    3. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      how much gluten do I need to eat before blood tests?

    4. - Jmartes71 posted a topic in Coping with Celiac Disease
      0

      Curious question

    5. - Amy Barnett posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Question

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,322
    • Most Online (within 30 mins)
      7,748

    avery144
    Newest Member
    avery144
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • trents
      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in hospitals or institutional care and I'm guessing your physician would be willing to grant you a diagnosis of gluten sensitivity (NCGS) even if your celiac testing comes up negative. Also, you need to be aware that oats (even gluten free oats) is a common cross reactor in the celiac community. Oat protein (avenin) is similar to gluten. You might want to look at some other gluten free hot  breakfast cereal alternatives.
    • catnapt
      learned I had a high PTH level in 2022 suspected to be due to low vit D  got my vit D level up a bit but still have high PTH   I am 70 yrs old (today in fact) I am looking for someone who also has hyperparathyroidism that might be caused by malabsorption    
    • catnapt
      I am on day 13 of eating gluten  and have decided to have the celiac panel done tomorrow instead of Wed. (and instead of extending it a few more weeks) because I am SO incredibly sick. I have almost no appetite and am not able to consume the required daily intake of calcium to try to keep up with the loss of calcium from the high parathyroid hormone and/or the renal calcium leak.    I have spent the past 15 years working hard to improve my health. I lost 50lbs, got off handfuls of medications, lowered my cholesterol to enviable levels, and in spite of having end stage osteoarthritis in both knees, with a good diet and keeping active I have NO pain in those joints- til now.  Almost all of my joints hurt now I feel like someone has repeatedly punched me all over my torso- even my ribs hurt- I have nausea, gas, bloating, headache, mood swings, irritability, horrid flatulence (afraid to leave the house or be in any enclosed spaces with other people- the smell would knock them off their feet) I was so sure that I wanted a firm diagnosis but now- I'm asking myself is THIS worth it? esp over the past 2 yrs I have been feeling better and better the more I adjusted my diet to exclude highly refined grains and processed foods. I didn't purposely avoid gluten, but it just happened that not eating gluten has made me feel better.   I don't know what I would have to gain by getting a definitive diagnosis. I think possibly the only advantage to a DX would be that I could insist on gluten-free foods in settings where I am unable to have access to foods of my choice (hospital, rehab, nursing home)  and maybe having a medical reason to see a dietician?   please let me know if it's reasonable to just go back to the way I was eating.  Actually I do plan to buy certified gluten-free oats as that is the only grain I consume (and really like) so there will be some minor tweaks I hope and pray that I heal quickly from any possible damage that may have been done from 13 days of eating gluten.    
    • Jmartes71
      So I've been dealing with chasing the name celiac because of my body actively dealing with health issues related to celiac though not eating. Diagnosed in 1994 before foods eliminated from diet. After 25 years with former pcp I googled celiac specialist and she wasn't because of what ive been through. I wanted my results to be sent to my pcp but nothing was sent.I have email copies.I did one zoom call with np with team member from celiac specialist in Nov 2025 and she asked me why I wanted to know why I wanted the celiac diagnosis so bad, I sad I don't, its my life and I need revalidaion because its affecting me.KB stated well it shows you are.I asked then why am I going through all this.I was labeled unruly. Its been a celiac circus and medical has caused anxiety and depression no fault to my own other than being born with bad genetics. How is it legal for medical professionals to gaslight patients that are with an ailment coming for help to be downplayed? KB put in my records that she personally spent 120min with me and I think the zoom call was discussing celiac 80 min ONE ZOOM call.SHE is responsible for not explaining to my pcp about celiac disease am I right?
    • Amy Barnett
      What is the best liquid multivitamin for celiac disease?
×
×
  • 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.