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 Mark Conway's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Have I got coeliac disease

    2. - trents replied to Mark Conway's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Have I got coeliac disease

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

      Seeking advice on potential gluten challenge

    4. - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Seeking advice on potential gluten challenge

    5. - Wheatwacked replied to Mark Conway's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Have I got coeliac disease

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

    • Total Members
      133,152
    • Most Online (within 30 mins)
      7,748

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

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

  • Posts

    • trents
      And I agree with Wheatwacked. When a physician tells you that you can't have celiac disease because you're not losing weight, you can be certain that doctor is operating on a dated understanding of celiac disease. I assume you are in the UK by the way you spelled "coeliac". So, I'm not sure what your options are when it comes to healthcare, but I might suggest you look for another physician who is more up to date in this area and is willing to work with you to get an accurate diagnosis. If, in fact, you do not have celiac disease but you know that gluten causes you problems, you might have NCGS (Non Celiac Gluten Sensitivity). There is no test available yet for NCGS. Celiac must first be ruled out. Celiac disease is an autoimmune disorder that damages the lining of the small bowel. NCGS we is not autoimmune and we know less about it's true nature. But we do know it is considerably more common than celiac disease.
    • trents
      @Mark Conway, here is an article outlining the various tests that can be used to diagnose celiac disease. By far, the most popular one ordered by physicians is the tTG-IGA. But almost all of these tests are known by different names so the terminology will vary from place to place and lab to lab. The article gives common variant names for each test.  In addition to IGA tests there are IGG tests which are particularly useful in the case of IGA deficiency.  
    • JudyLou
      Thank you so much @knitty kitty! My feet aren’t dry or ashy and I don’t have a rash that gets scaly. It’s like very itchy/burning vesicles that are symmetrical - on both arms, both legs, etc. They actually feel better in direct sunlight as long as it isn’t really hot or I’m not exercising outside, but gets worse if I sweat (especially if the area is covered up). It’s not usually on the outside of my elbows and knees which seems more typical of dermatitis herpetiformis (unless it spreads there). It tends to first hit the inside of those areas. Interestingly, twice the rash broke out soon after eating an unhealthy meal and having an alcoholic drink (I only drink a few times a year, no more alcohol content than a glass of wine).  So I wonder if there is a connection. I’m halfway considering doing a gluten challenge for a few months to see what happens, knowing I can stop if I have any symptoms, and asking for a full celiac disease panel at the end. I really appreciate your thoughts! 
    • knitty kitty
      Welcome, @JudyLou, Your rash sounds very similar to the one I experienced.  Mine was due to a deficiency in Niacin B3, although I had deficiencies in other nutrients as well.  Celiac disease causes malabsorption of all the essential nutrients, but eating a poor diet, taking certain medications, or drinking alcohol can result in deficiency diseases outside of Celiac, too.  Symptoms can wax and wane depending on dietary intake.  I knew an alcoholic who had the "boots" of Pellagra, which would get worse when he was drinking more heavily, and improve when he was drinking less.   Niacin deficiency is called Pellagra.  Symptoms consist of dermatitis, diarrhea, dementia, and death (the four D's).  A scaly rash on the feet and hands and arms are called the "boots" and "gloves" of Pellagra.  Darkened skin around the neck exposed to the sun is Casal's necklace.  Poor farmers with niacin deficient diets were called "red necks" because of this.    Does your rash get worse if you're in the sun?  Mine did.  Any skin exposed to the sun got blistered and scaly.  Arms, legs, neck, head.  Do you have dry, ashy skin on your feet?  The itchiness was not only from the rash, but neuropathy.   My doctors were clueless.  They didn't put all my symptoms together into the three D's.  But I did.  I'd learned about Pellagra at university.  But there weren't supposed to be deficiency diseases anymore in the developed world.  Doubtful it could be that simple, I started supplementing with Niacin and other essential nutrients.  I got better.   One of Niacinamide functions is to help stop mast cells from releasing histamine.  Your allergist gave you doxepin, an antihistamine which stops mast cells from releasing histamine.   Since you do have a Celiac gene, staying on the gluten free diet can prevent Celiac disease from being triggered again.   Interesting Reading: These case studies have pictures... Pellgra revisited.  https://pmc.ncbi.nlm.nih.gov/articles/PMC4228662/ Steroid-Resistant Rash With Neuropsychiatric Deterioration and Weight Loss: A Modern-Day Case of Pellagra https://pmc.ncbi.nlm.nih.gov/articles/PMC12532421/#:~:text=Figure 2.,(right panel) upper limbs.&text=The distribution of the rash,patient's substantial response to treatment.   Cutaneous signs of nutritional disorders https://pmc.ncbi.nlm.nih.gov/articles/PMC8721081/#:~:text=Additional causes of yellow skin,the clinical features of Kwashiorkor.   Hello, @Staticgypsy, I would not recommend cutting so many nutritious foods out of ones diet.  Oxalates can cause problems like kidney stones, but our bodies can process oxalates out of our systems with certain vitamins like Vitamins A and D and Pyridoxine B 6.   People with Celiac disease are often low in fat soluble vitamins A and D, as well as the water soluble B vitamins like Pyridoxine B 6.  Focus on serving your granddaughter nutrient dense meals to ensure she gets essential vitamins and minerals that will help her grow. Micronutrient inadequacy and urinary stone disease: an analysis of the National Health and Nutrition Examination Survey 2007-2018 https://pubmed.ncbi.nlm.nih.gov/36976348/ Multivitamins co-intake can reduce the prevalence of kidney stones: a large-scale cross-sectional study https://pubmed.ncbi.nlm.nih.gov/38564076/
    • Wheatwacked
      This doctor is obviously under educated about Celiac Disease. Deficiencies that can cause oral thrush (Candidiasis) mouth ulcers: Thiamine B1 B12 Folate Zinc Vitamin C B2 B6 Iron Malabsorption Syndrome is often co-morbid with Celiac Disease causing multiple deficiencies of the essential vitamins and minerals.  Low or deficient  Vitamin D is almost always found in undiagnosed Celiac Disease. "Over 900 genes have been reported as regulated by vitamin D"  Possible Role of Vitamin D in Celiac Disease Onset  "The overall prevalence rate of vitamin D deficiency was 41.6%, with the highest rate seen in blacks (82.1%), followed by Hispanics (69.2%)."    Prevalence and correlates of vitamin D deficiency in US adults
×
×
  • 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.