Topical Itch Relief - other than Dapson

[MinNYC]

Im new to this site and to DH but not new to this sort of Board. I thought it would be helpful to have ONE thread, pinned if possible, which clearly and coherently listed the methods used to combat this awful itch. It certainly would make things easier for me and other newbies. (Emailed hints on how to "tag" this would be appreciated.) 

Please forgive me if i dont credit you with your suggestion. Ive been busy compiling options for myself and neglected to note the names of the people who posted them.

And please, please add suggestions, your first hand experiences with the various measures  and your identity for the suggestions ive posted below.

From my research on this and other sites: 

 

1) Orajel oral pain reliever for toothache Maximum Strength. The active ingredient is Benzocaine 20%. - the poster says this is absolutely magic and cures the itch for hours and hours

2) Benzocaine spray, Solarcaine spray or the like - great for hard to reach or large areas. gives complete relief but doesnt necessarily last long term

3) "ultra-venilated french green illite clay".  Ive not looked into this but the poster says "I researched it a few years ago, trying to get rid of my HERPES (which I do not believe I have). It is a dry powder, I mix with water, and make a paste, put a thick application on my rash and cover with saran wrap (important to keep moist). Voila.,," 

4) vicks vapor rub 2 x a day to smother it

5) cold compresses, with plain water or a diluted Apple Cider Vinegar

6) showers as scauldingly hot as you can stand them - probably awful for the skin but this is one that worked for me. Warning: it is EXTRAORDINARILY, screamingly painful at first. (And yes, i actually did scream.) But then it feels  like someone is deeply scratching all of those itches - all without making you bleed. And finally, theres a sort of release and numbness so that i didnt itch for a long while plus i was tired and calm enough that id fall right to sleep. At the height of my first major outbreak (i had lesser unidentified ones before), i was taking 3 scaulding showers a day.

7) teatree oil - i love teatrea oil for infections but this didnt work for my rash

8) Baking soda in warm bath water. At least one half cup.

9) Ivy Dry - cream or lotion

10) Band Aid Itch Relief Gel Spritz 

And......

 

 

 

Edited June 5, 2017 by MinNYC

[kareng]

I think the first thing is - is it REALLY DH!? Did a dermatologist biopsy it properly and the pathology report confirms Dermatitis Herpetitis?

Second- a strict gluten free diet is the only way, currently, to stop it from getting worse or coming back

Third- there are things a doctor can prescribe for a period of time to help it go away.

[MinNYC]

Kareng - Thanks. All 100% true. But since those points are covered in many, many other places on this site, i thought a one stop shop for topical itch relief might be helpful to me and to others.

[5143Betty]

I've never been diagnosed with DH, but get a rash that feels like burning match heads in the bottoms of my feet that lasts for weeks. I found applying apple cider vinegar to the area helps, and I second the benzocaine too. 

[Tim (DH Poster Boy)]

I buy Epsom Salt in 50lb. bags 4 at a time to get the free shipping - the UPS guy/gal hates me on those days...  Six cups or more in a tub of warm - medium hot water.  Use the end (the roughest part) of a loofah to remove scaly skin/scabs.  Soak for at least an hour in the salt water.  I've read that the antibodies created in the dh process are stored in the top layer of skin, combine with iodine in some way to create the rash we all know and love.  So logic says - loose the top layer of skin - loose the itch  - at least for a while.  I get relief for several hours at a time if I also apply triamcinolone acetonide cream and moisturizing cream while still a bit wet.

Just another quick point:  Cross Reactions to other proteins is real.  Did the Cyrex Lab Array 4 test and it showed above normal for Tapioca - no wondering I started to itch like crazy on my 3rd cookie (ok - maybe my 5th or 6th) from the great gluten free bakery operated by 5 brothers with celiac disease which I can no longer frequent because Tapioca flour is in their proprietary blend of gluten free flour - and their stuff was delicious - so that one hurt.

I also have a question to ask.  Has anyone tried RSO topically to treat DH?  I've heard people have gotten results using it for other skin conditions including skin cancer.  Seems the magic weed has a lot of anti-inflammatory properties - just wondering if anyone has tried this where available.

Been diagnosed with DH/Celiacs disease for about 3 years.  After I got gluten free, I accidentally glutened myself about 10 months ago, so I know what that's like - just don't know how long the effects last as the antibodies can stay in the skin for a long time.  I have also had severe hay fever rashes erupt over the top of the DH.  Realized this after two years in a row of getting rashes during allergy season, and an especially terrible one last summer after mowing grass and having direct contact.  My allergies were never severe in terms of hay fever, but the onset of the DH has triggered skin reactions to grass pollen for sure and probably other things yet to be identified.  This summer I will limit contact, wear masks, shower immediately after mowing, and take antihistamines daily during allergy season and see how it goes.  Needed a round of Prednizone to get on top of it, and a lot of salt water soaks - so will try and stay ahead of the curve this summer.  The good news is that almost all of my symptoms show up as DH - no stomach or digestive issues at this point.  Am beginning to develop some arthritis especially in joints on my hands where the DH occurs - go figure.  I'm going to do a round or two of CMO as I've seen it work for people who have been diagnosed with Rheumatoid Arthritis - just throwing some more mud at the wall hoping some sticks.  Avoiding  nightshade vegetables, eating anti-inflammatory foods, drinking Tumeric tea, etc... 

I should mention that I did try Dapsone for about 45 days when first diagnosed.  I got very little relief if any - the rash changed - but didn't subside or go away, and when I started to have pain in my side on a daily basis and my blood work started to get to the upper end of "normal" I quit taking the Dapsone.  Other people do get relief using Dapsone to treat DH.

LASTLY - STAY HYDRATED.  I believe people in general don't drink enough water.  People with DH - in my opinion, based on personal experience - need to drink about twice as much water as the average person.  I try to get at least a gallon down every day - easy to forget - when I remember I chug 24 ounces to "catch up".  Pretend you're on the grinder and your DI just ordered you to "HYDRATE!" - chug, chug, chug.

Hope some of this helps.

 

 

[squirmingitch]

Fluocinonide Cream or ointment 0.05% by prescription only. Works very well!

[MinNYC]

Thanks all. Ive actually been having some luck taking one OTC Benadryl each night. May not be the healthiest thing long term but i definitely needed a break from the far too frequent itchy and ugly bumps. And its working.

Hopefully this thread gives others lots of options.

[Victoria1234]

15 hours ago, MinNYC said:

Thanks all. Ive actually been having some luck taking one OTC Benadryl each night. May not be the healthiest thing long term but i definitely needed a break from the far too frequent itchy and ugly bumps. And its working.

Hopefully this thread gives others lots of options.

What is wrong with one Benadryl per day?

[MinNYC]

I googled and it seems to have side effects if used long term. But right now, i dont care. It works. Do you use it too?

[cyclinglady]

Yes! Benadryl (or genetic version) crosses the blood brain barrier (one reason that it can make you sleepy).  A study showed that it MAY cause dementia.  So, best to use a second generation antihistamine like Zyrtec or Claritin.  I personally save Benadryl for a severe allergic reaction.  

https://www.health.harvard.edu/blog/common-anticholinergic-drugs-like-benadryl-linked-increased-dementia-risk-201501287667

https://www.webmd.com/allergies/news/20160509/anticholinergic-drugs-dementia-link#1

[Victoria1234]

1 hour ago, MinNYC said:

I googled and it seems to have side effects if used long term. But right now, i dont care. It works. Do you use it too?

I do use it! I just used it last night as I thought I was having a reaction to carmex. Didn't seem to help though. I also used it occasionally for helping with sleep. It did not help me with dh though.

[squirmingitch]

Didn't help me with dh either.

[Susan Cameron]

On 12/7/2017 at 3:01 PM, Tim (DH Poster Boy) said:

I buy Epsom Salt in 50lb. bags 4 at a time to get the free shipping - the UPS guy/gal hates me on those days...  Six cups or more in a tub of warm - medium hot water.  Use the end (the roughest part) of a loofah to remove scaly skin/scabs.  Soak for at least an hour in the salt water.  I've read that the antibodies created in the dh process are stored in the top layer of skin, combine with iodine in some way to create the rash we all know and love.  So logic says - loose the top layer of skin - loose the itch  - at least for a while.  I get relief for several hours at a time if I also apply triamcinolone acetonide cream and moisturizing cream while still a bit wet.

Just another quick point:  Cross Reactions to other proteins is real.  Did the Cyrex Lab Array 4 test and it showed above normal for Tapioca - no wondering I started to itch like crazy on my 3rd cookie (ok - maybe my 5th or 6th) from the great gluten free bakery operated by 5 brothers with celiac disease which I can no longer frequent because Tapioca flour is in their proprietary blend of gluten free flour - and their stuff was delicious - so that one hurt.

I also have a question to ask.  Has anyone tried RSO topically to treat DH?  I've heard people have gotten results using it for other skin conditions including skin cancer.  Seems the magic weed has a lot of anti-inflammatory properties - just wondering if anyone has tried this where available.

Been diagnosed with DH/Celiacs disease for about 3 years.  After I got gluten free, I accidentally glutened myself about 10 months ago, so I know what that's like - just don't know how long the effects last as the antibodies can stay in the skin for a long time.  I have also had severe hay fever rashes erupt over the top of the DH.  Realized this after two years in a row of getting rashes during allergy season, and an especially terrible one last summer after mowing grass and having direct contact.  My allergies were never severe in terms of hay fever, but the onset of the DH has triggered skin reactions to grass pollen for sure and probably other things yet to be identified.  This summer I will limit contact, wear masks, shower immediately after mowing, and take antihistamines daily during allergy season and see how it goes.  Needed a round of Prednizone to get on top of it, and a lot of salt water soaks - so will try and stay ahead of the curve this summer.  The good news is that almost all of my symptoms show up as DH - no stomach or digestive issues at this point.  Am beginning to develop some arthritis especially in joints on my hands where the DH occurs - go figure.  I'm going to do a round or two of CMO as I've seen it work for people who have been diagnosed with Rheumatoid Arthritis - just throwing some more mud at the wall hoping some sticks.  Avoiding  nightshade vegetables, eating anti-inflammatory foods, drinking Tumeric tea, etc... 

I should mention that I did try Dapsone for about 45 days when first diagnosed.  I got very little relief if any - the rash changed - but didn't subside or go away, and when I started to have pain in my side on a daily basis and my blood work started to get to the upper end of "normal" I quit taking the Dapsone.  Other people do get relief using Dapsone to treat DH.

LASTLY - STAY HYDRATED.  I believe people in general don't drink enough water.  People with DH - in my opinion, based on personal experience - need to drink about twice as much water as the average person.  I try to get at least a gallon down every day - easy to forget - when I remember I chug 24 ounces to "catch up".  Pretend you're on the grinder and your DI just ordered you to "HYDRATE!" - chug, chug, chug.

Hope some of this helps.

 

 

Jamaican Black Castor Oil works well on my DH and it is natural.

[robird]

For me, cold water shower helps, and having a bath of salty water. I use dead sea salt. It helped.

And obviously - no gluten, no processed food, no eating out, etc.

[MelRock]

my diagnosis has not yet been confirmed and I am brand new to this board.  But I have been wheat intolerant for over 15 years and the DH makes the most sense for my current condition. 

 

I have found a 30 minute soak in Epsom salts and baking soda followed by a cool shower helps tremendously.  Also helpful is clothing that clings a bit - leggings and long sleeved thumbshirts ease the itching.  Loose clothing tends to irritate and cause itching.  We are in the middle of a heat wave here in Canada and the long black clothes seem a bit odd, but they do help. 

[Dimer]

On 12/7/2017 at 5:01 PM, Tim (DH Poster Boy) said:

I buy Epsom Salt in 50lb. bags 4 at a time to get the free shipping - the UPS guy/gal hates me on those days...  Six cups or more in a tub of warm - medium hot water.  Use the end (the roughest part) of a loofah to remove scaly skin/scabs.  Soak for at least an hour in the salt water.  I've read that the antibodies created in the dh process are stored in the top layer of skin, combine with iodine in some way to create the rash we all know and love.  So logic says - loose the top layer of skin - loose the itch  - at least for a while.  I get relief for several hours at a time if I also apply triamcinolone acetonide cream and moisturizing cream while still a bit wet.

Just another quick point:  Cross Reactions to other proteins is real.  Did the Cyrex Lab Array 4 test and it showed above normal for Tapioca - no wondering I started to itch like crazy on my 3rd cookie (ok - maybe my 5th or 6th) from the great gluten free bakery operated by 5 brothers with celiac disease which I can no longer frequent because Tapioca flour is in their proprietary blend of gluten free flour - and their stuff was delicious - so that one hurt.

I also have a question to ask.  Has anyone tried RSO topically to treat DH?  I've heard people have gotten results using it for other skin conditions including skin cancer.  Seems the magic weed has a lot of anti-inflammatory properties - just wondering if anyone has tried this where available.

Been diagnosed with DH/Celiacs disease for about 3 years.  After I got gluten free, I accidentally glutened myself about 10 months ago, so I know what that's like - just don't know how long the effects last as the antibodies can stay in the skin for a long time.  I have also had severe hay fever rashes erupt over the top of the DH.  Realized this after two years in a row of getting rashes during allergy season, and an especially terrible one last summer after mowing grass and having direct contact.  My allergies were never severe in terms of hay fever, but the onset of the DH has triggered skin reactions to grass pollen for sure and probably other things yet to be identified.  This summer I will limit contact, wear masks, shower immediately after mowing, and take antihistamines daily during allergy season and see how it goes.  Needed a round of Prednizone to get on top of it, and a lot of salt water soaks - so will try and stay ahead of the curve this summer.  The good news is that almost all of my symptoms show up as DH - no stomach or digestive issues at this point.  Am beginning to develop some arthritis especially in joints on my hands where the DH occurs - go figure.  I'm going to do a round or two of CMO as I've seen it work for people who have been diagnosed with Rheumatoid Arthritis - just throwing some more mud at the wall hoping some sticks.  Avoiding  nightshade vegetables, eating anti-inflammatory foods, drinking Tumeric tea, etc... 

I should mention that I did try Dapsone for about 45 days when first diagnosed.  I got very little relief if any - the rash changed - but didn't subside or go away, and when I started to have pain in my side on a daily basis and my blood work started to get to the upper end of "normal" I quit taking the Dapsone.  Other people do get relief using Dapsone to treat DH.

LASTLY - STAY HYDRATED.  I believe people in general don't drink enough water.  People with DH - in my opinion, based on personal experience - need to drink about twice as much water as the average person.  I try to get at least a gallon down every day - easy to forget - when I remember I chug 24 ounces to "catch up".  Pretend you're on the grinder and your DI just ordered you to "HYDRATE!" - chug, chug, chug.

Hope some of this helps.

 

 

Every dermatologist I have gone to, tells me my skin rash and severe itching is not dh.  I get absolutely no relief from topical meds.  I was diagnosed with celiac disease about 11 years ago, been fighting this skin issue for as long, even though I am gluten free.  What is the connection with consuming  iodine?  Help!

[cyclinglady]

Hi Dimer!  

While I do not have DH, I can (based on member input) share that those with DH need to be super strict (e.g. avoiding processed foods as 20 ppm might be too much for DH sufferers and eating out).  

Search out Squirmingitch’s posts in the DH section.  She explains the need to cut down on foods containing iodine, but for only a short time as everyone needs iodine to survive.  

Consider the Fasano diet for a few months.  We call it the Fasano diet (after celiac research and Ped GI, Dr. Alessio Fasano.  His team developed the diet as they found too many celiacs were actually getting gluten into their diet despite their best efforts.  

https://res.mdpi.com/nutrients/nutrients-09-01129/article_deploy/nutrients-09-01129.pdf?filename=&attachment=1

I did the diet for a few months.  It worked, sort of.  A repeat endoscopy revealed a healed small intestine, but autoimmune gastritis.   

[ejk]

On 2/18/2019 at 9:16 PM, cyclinglady said:

Hi Dimer!  

While I do not have DH, I can (based on member input) share that those with DH need to be super strict (e.g. avoiding processed foods as 20 ppm might be too much for DH sufferers and eating out).  

Search out Squirmingitch’s posts in the DH section.  She explains the need to cut down on foods containing iodine, but for only a short time as everyone needs iodine to survive.  

Consider the Fasano diet for a few months.  We call it the Fasano diet (after celiac research and Ped GI, Dr. Alessio Fasano.  His team developed the diet as they found too many celiacs were actually getting gluten into their diet despite their best efforts.  

https://res.mdpi.com/nutrients/nutrients-09-01129/article_deploy/nutrients-09-01129.pdf?filename=&attachment=1

I did the diet for a few months.  It worked, sort of.  A repeat endoscopy revealed a healed small intestine, but autoimmune gastritis.   

Hi all. My rash and itching is finally starting to settle down now that I've been gluten free for almost two years. I found that making an ointment of part Vaseline and part Vanicream creme (half and half each) works really well. I slather it on after a shower and it soothes and protects the skin. Hope this helps someone out there - I know each of us respond in very individual ways.

[Iiv]

I love something called Inotyol, it's a super fat ointment with zinc oxide among other things. Zinc oxide works a lot better on my skin than strong cortisone, especially inotyol. No side effects besides stains on fabrics. Often used on babies as diaper ointment. 

It's like an extra layer of thick skin that cools and calms( perhaps the lavender oils work?) And protects. Waterproof too. 

To get it on the entire body I usually mix it with some other oil, preferably camelia oil since it kind of rebuilds the skin and calms it down too.

But most often I use it pure only on the most severe patches, and pure camelia on the rest. 

There's also something called "skin food" from urtekram I think, which litterly is food for the skin. Unfortunately it doesn't last long and is quite expensive compared to inotyol. 

 

I don't have DH, I have atopic dermatitis which I've learnt is severely triggered by gluten. It feels more like a really bad sunburn, one with blisters and scaling. hence more burn and pain than itching, and some mosquito bites on top of it. But perhaps zinc oxide mixed in thick fat will give someone else a we bit of relief. 

 

[Kamaka]

The only thing that helps me temporarily with the insane pain and itching is clove oil and peppermint oil mixed with a carrier (coconut oil). It only helps for about an hour. warning: clove oil can BURN LIKE HELL, so I only use one drop on one area and it MUST be diluted prior with a carrier oil. For example, one drop on each arm and each shoulder. It can take anywhere from 5 seconds to 5 minutes to feel the burn so do not under any circumstances add more than a drop. Do not use clove oil on children, elderly or someone with sensitive skin. If that's too much, just try the peppermint oil. The combination of clove and peppermint is similar to using Icy Hot ointment. 

- I am currently taking organic (bioavailable) sulphur supplements -  MSM, NAC and using DMSO topically with a few drops of essential oils that help inflammation (ie. lavender). 

MSM and DMSO are part of the planet's natural rain cycle and NAC is made from cruciferous vegetables. All of these are amazing for your skin as well as arthritis and pain. They improve cell permeability and help you absorb the nutrients you need as well as detox what you don't. DMSO is a natural anti-inflammatory and helps make scar tissue more supple.

(Do not use DMSO unless you do your research. DMSO itself is harmless to healthy tissues but if you have DMSO on your body and you so much as even touch the wrong kind of plastic, artificial fabrics, unnatural skin care products, etc, the chemicals and toxins will absorb through your skin and deep into your body. If you mix essential oils with DMSO, ONLY use essential oils that are safe to ingest. Many are toxic if taken internally and can even kill you. Using an essential oil with DMSO topically on your skin, is the same as ingesting it because of the solvent action of the DMSO).

Someone mentioned taking long baths in epsom salt and exfoliating to hopefully renew the skin and get the IgA out as soon as possible. I agree with this approach and am doing the same thing. Taking the sulphur supplements, especially using DMSO before a bath will help with this. Note: Epsom salt is not table salt or sodium salt. Its magnesium sulfate (magnesium + sulfur + oxygen), all good for healing and skin. Do not ever use table salt. It usually has iodine and will make DH worse. Pure, unprocessed sea salt will help draw out toxins. I alternate between epsom salt baths and sea salt baths. I was told by multiple ND's that sea salt has slightly more detox action than epsom salt. Unprocessed sea salt includes: hawaiian salt, sel gris, celtic salt and himalayan salt/pink salt (fossilized sea salt from mines). 

[TDZ]

My husband slathers Aquaphor lotion all over the various rash patches, but, needless to say, that's rather messy. It's the only thing he's found that keeps it from drying out and dampens the itching somewhat.

[Jani5t5ai]

triamcinolone acetonide cream. AMEN! This cream works for my skin blisters like none other. Not only did it heal my severely damaged skin within a week, if I get a new outbreak because I slipped up in the gluten department, the cream stops the blistery rash from spreading and really stops the itch. I strongly suggest getting your dematologist to prescribe this if you have DH. Dapsone gave me no relief.

[jas3734]

I've been taking hemp extract oil orally for a few months to calm my nerves during this pandemic.  I just put a drop on an active DH rash and it gave some immediate relief.  I also have a hemp extract lotion but that didn't seem to provide as much relief.  The oil probably has more of a concentration of it.

[Sharron robinson]

On 12/7/2017 at 10:01 PM, Tim (DH Poster Boy) said:

I buy Epsom Salt in 50lb. bags 4 at a time to get the free shipping - the UPS guy/gal hates me on those days...  Six cups or more in a tub of warm - medium hot water.  Use the end (the roughest part) of a loofah to remove scaly skin/scabs.  Soak for at least an hour in the salt water.  I've read that the antibodies created in the dh process are stored in the top layer of skin, combine with iodine in some way to create the rash we all know and love.  So logic says - loose the top layer of skin - loose the itch  - at least for a while.  I get relief for several hours at a time if I also apply triamcinolone acetonide cream and moisturizing cream while still a bit wet.

Just another quick point:  Cross Reactions to other proteins is real.  Did the Cyrex Lab Array 4 test and it showed above normal for Tapioca - no wondering I started to itch like crazy on my 3rd cookie (ok - maybe my 5th or 6th) from the great gluten free bakery operated by 5 brothers with celiac disease which I can no longer frequent because Tapioca flour is in their proprietary blend of gluten free flour - and their stuff was delicious - so that one hurt.

I also have a question to ask.  Has anyone tried RSO topically to treat DH?  I've heard people have gotten results using it for other skin conditions including skin cancer.  Seems the magic weed has a lot of anti-inflammatory properties - just wondering if anyone has tried this where available.

Been diagnosed with DH/Celiacs disease for about 3 years.  After I got gluten free, I accidentally glutened myself about 10 months ago, so I know what that's like - just don't know how long the effects last as the antibodies can stay in the skin for a long time.  I have also had severe hay fever rashes erupt over the top of the DH.  Realized this after two years in a row of getting rashes during allergy season, and an especially terrible one last summer after mowing grass and having direct contact.  My allergies were never severe in terms of hay fever, but the onset of the DH has triggered skin reactions to grass pollen for sure and probably other things yet to be identified.  This summer I will limit contact, wear masks, shower immediately after mowing, and take antihistamines daily during allergy season and see how it goes.  Needed a round of Prednizone to get on top of it, and a lot of salt water soaks - so will try and stay ahead of the curve this summer.  The good news is that almost all of my symptoms show up as DH - no stomach or digestive issues at this point.  Am beginning to develop some arthritis especially in joints on my hands where the DH occurs - go figure.  I'm going to do a round or two of CMO as I've seen it work for people who have been diagnosed with Rheumatoid Arthritis - just throwing some more mud at the wall hoping some sticks.  Avoiding  nightshade vegetables, eating anti-inflammatory foods, drinking Tumeric tea, etc... 

I should mention that I did try Dapsone for about 45 days when first diagnosed.  I got very little relief if any - the rash changed - but didn't subside or go away, and when I started to have pain in my side on a daily basis and my blood work started to get to the upper end of "normal" I quit taking the Dapsone.  Other people do get relief using Dapsone to treat DH.

LASTLY - STAY HYDRATED.  I believe people in general don't drink enough water.  People with DH - in my opinion, based on personal experience - need to drink about twice as much water as the average person.  I try to get at least a gallon down every day - easy to forget - when I remember I chug 24 ounces to "catch up".  Pretend you're on the grinder and your DI just ordered you to "HYDRATE!" - chug, chug, chug.

Hope some of this helps.

 

 

This DH is driving me absolutely mad I have had this for 1 year as far as I no I'm gluten free I swear making .e so depressed 

[Scott Adams]

Hi @Sharron robinson, welcome to the forum! Have you tried some of the things mentioned in this thread? You probably know this already, but maintaining a 100% gluten-free diet is crucial. As a last resort there is Dapsone, which works, but can have some negative side-effects.