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Has anyone found anything that works?

This sucks.

By This sucks.
in Dermatitis Herpetiformis

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This sucks. Apprentice
This sucks.
Posted

Has anyone found something that helps alleviate dh.  Besides going gluten free which seems to have made it worse each time I get glutened now.  Has anyone in the world found something natural that helps of gets rid of dh? It is all over my chest and has been for years. I have only been glutenfree for a month now as I was only diagnosed a month ago, but I am concerned it will never go away.  I'm very self conscious, have GAD and this really bothers me.  I know I need to wait maybe a year of being gluten free, but there has to be someone somewhere who has found some sort of relief using something preferably natural.   How can this be the only type of rash in the entire world that they don't have a cure or safe cream for.  Why are we so unlucky?  It seems like no one cares about people with celiac due to lack to research, funding and doctors working to help us.  How is there not a damn pill for us yet???  Sorry to vent, but this is getting ridiculous!!!  

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Lawrence T. Newbie
Lawrence T.
Posted

If you are talking about the rash that gluten can give you that looks like blisters, I can feel for you. I get it on my legs the worst but break out other places too. I found baking soda works at times as a wash over my skin, sometimes aloe gel works if left on to sink in, but nothing really takes it away until the rash runs its course. If you just got off gluten, it might take three months for it to clear completely. If it doesn't in that time, look at other causes. Another thing, don't walk down the baking aisle at the stores where the flour is if any spills are on the floors. You'll get exposed all over again depending on your sensitivity level. All I have to do is breathe it and I get the rash. You might try an antihistamine but make sure it is gluten free as all your meds should be now.

kareng Grand Master
kareng
Posted
3 hours ago, This sucks. said:

Has anyone found something that helps alleviate dh.  Besides going gluten free which seems to have made it worse each time I get glutened now.  Has anyone in the world found something natural that helps of gets rid of dh? It is all over my chest and has been for years. I have only been glutenfree for a month now as I was only diagnosed a month ago, but I am concerned it will never go away.  I'm very self conscious, have GAD and this really bothers me.  I know I need to wait maybe a year of being gluten free, but there has to be someone somewhere who has found some sort of relief using something preferably natural.   How can this be the only type of rash in the entire world that they don't have a cure or safe cream for.  Why are we so unlucky?  It seems like no one cares about people with celiac due to lack to research, funding and doctors working to help us.  How is there not a damn pill for us yet???  Sorry to vent, but this is getting ridiculous!!!  

If you were actually diagnosed with Dh by a skin biopsy, there is a medication that a doctor can prescribe for you.

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If you have only been gf a month, it can take months to go away.  You need to be very careful not to get glutened.

GFinDC Veteran
GFinDC
Posted

Check in the Dermatitis Herpetiformis forum section. I think they have some threads suggesting various things besides Dapsone.

This sucks. Apprentice
This sucks.
Posted
  • Author

Also,  they say to say away from iodine. Which is the same as iodized salt right??  And we need to have some balance of it in our bodies or we can have thyroid problems.  So basically my question is can lessening our intake of table salt and butter work, as we should not avoid iodine totally like everyone on these forums say to.   Iodine deficiency is not something we want to add to our list of problems.  Celiacs have more than enough problems to deal with. 

GFinDC Veteran
GFinDC
Posted

I think the time for DH to go away after gf is variable, but 6 months is possible.  Reducing iodine intake is meant to be a short term thing until the flare subsides.  I am not an expert on DH but the members who have DH say reducing iodine helps them get over rash flare-ups.

squirmingitch Veteran
squirmingitch
Posted

GFinDC is correct. The low iodine is not meant to be a permanent thing but as a kick starter if you will. I eat milk, butter & other foods containing iodine now but I still have a problem with the very high iodine foods such as asparagus and seafood. I eat them & the rash flares again so I don't eat them.

Each person is an individual so the amount of time for your dh to go away can not be predicted. I can tell you one thing though. If you go out to eat you are playing Russian Roulette. Get cc'd with gluten & you're asking for what you get. If I sound harsh it's because dh is a harsh ailment. 

You could try the Fasano Gluten Contamination Elimination diet as a kick starter. It limits anything that could possibly have any gluten at all.

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  • 1 month later...
razzle5150 Enthusiast
razzle5150
Posted

all I know of is Dapsone and I went from 25 , to 50 and now 100  its still not working very well. still on a gluten free diet  lost over 25 lbs so now seeing a dietician...   I am 101   and 5 ft ....  I have a problem with protein  intake .... and of course constipation.. ugh

  • 1 month later...
AMJ Newbie
AMJ
Posted

As someone else just mentioned, I am also on Dapsone 100mg daily.  My rash has dramatically improved but still get occasional blisters.  Have be gluten-free for 6 months, ever since I was diagnosed with celiac disease. I first tried the topical Dapsone cream, but that didn't seem to work. My major issue now is trying to take care of all the scarring I received from the DH rash.  I have scars on the back of my neck, chest, arms/elbows and upper thighs.  In some areas, I've lost pigmentation around the scars. Any suggestions?

apprehensiveengineer Community Regular
apprehensiveengineer
Posted

Not on Dapsone, but have found that OTC corticosteroid cream helps lesions clear more quickly and helps with the pigmentation a bit. You don't want to overdo it with the cream as it thins your skin, so only apply to affected areas for a short period of time. Coconut oil (the kind you eat) applied to your skin helps with the dryness and seems to help healing a bit.

I would recommend Squirmingitch's advice - go with the Fasano diet. At the very least, avoid eating foods prepared by anyone but you at all costs and try to stay away from open flour/baking. Many celiacs claim to get away with doing these things (and maybe they truly do), but when your reaction manifests externally, it's difficult to pretend that risky behaviours are going below your immune system's radar.

knitty kitty Grand Master
knitty kitty
Posted

Nicotinamide helps a great deal.  Nicotinamide is a form of  Vitamin B3, also called Niacin.  Many new Celiacs have trouble absorbing sufficient vitamins and minerals because of intestinal damage.  Malabsorption causes malnutrition.  Deficiencies of the B Complex vitamins, especially niacin, and vitamins A and D often manifest as skin rashes and exacerbate DH.  Recent research has found that treatment with nicotinamide and tetracycline effectively treats DH.  Ask your doctor to check for vitamin deficiencies if you haven't already.  Also dapsone use may cause iron, B12, and folate deficiencies which may lead to anemia.  These should be monitored as well.  

Hope this helps.

 

buddyspal Rookie
buddyspal
Posted

I'm a naturalist -- I don't use drugs, creams, etc.   I do, however, scratch** the rash until I'm almost bleeding and then dump isopropyl alcohol in it -- that relieves the itch for quite some time.  (Stings at first though.)  I get the rashes on my legs. 

ANYWAY, I have found that a gluten-free diet is the only (or best) approach -- it's certainly the most natural, in my opinion.  It took six months before I felt I was cleansed of gluten.  I went nine months (or more) without a rash.  Then, I mistakenly ate some soup with barley in it.  Got the rash.  I let it run its course while getting back to & staying on a gluten-free diet.

My best advice is just to stay on a gluten-free diet.  Be strong, brave.  You can do it!  ;) 

** I should clarify that when my rashes start itching, I can't help but scratch (excessively).  I am not suggesting scratching yourself (with or without cause) as a means to an end.  Don't scratch if you can.  ;) 

AMJ Newbie
AMJ
Posted

Thank you for taking the time for sharing that info. Don't we have the best disease ever! There's got to be a better way to cut down the scarring. Yes, I've scratched till it bleed. Can't help it. It's like having a bunch of mosquito bites. Yes, only gluten free now. Still have bursts, so probably am being exposed to gluten. Will need to stop dapsone soon. Good luck with your situation.

Victoria1234 Experienced
Victoria1234
Posted

Had The rash for years before I went gluten-free. My rash took about a month or two to heal and vanish. When I get glutened the rash areas start to itch a bit- besides being constipated it's my only clue!

good luck and be patient 

BergieF Explorer
BergieF
Posted

I get it on the back of my right leg and right elbow.  I have no idea why it's just limited to the right side of my body.  My family care doctor prescribed me a steroid and steroid cream.  The oral steroid has only made me grouchy and fat!  I'm probably going to stop taking it since it hasn't helped the rash much.  Good luck getting rid of yours!

Posterboy Mentor
Posterboy
Posted
On 1/31/2017 at 1:15 PM, This sucks. said:

Has anyone found something that helps alleviate dh.  Besides going gluten free which seems to have made it worse each time I get glutened now.  Has anyone in the world found something natural that helps of gets rid of dh? It is all over my chest and has been for years. I have only been glutenfree for a month now as I was only diagnosed a month ago, but I am concerned it will never go away.  I'm very self conscious, have GAD and this really bothers me.  I know I need to wait maybe a year of being gluten free, but there has to be someone somewhere who has found some sort of relief using something preferably natural.   How can this be the only type of rash in the entire world that they don't have a cure or safe cream for.  Why are we so unlucky?  It seems like no one cares about people with celiac due to lack to research, funding and doctors working to help us.  How is there not a damn pill for us yet???  Sorry to vent, but this is getting ridiculous!!!  

 

18 hours ago, knitty kitty said:

Nicotinamide helps a great deal.  Nicotinamide is a form of  Vitamin B3, also called Niacin.  Many new Celiacs have trouble absorbing sufficient vitamins and minerals because of intestinal damage.  Malabsorption causes malnutrition.  Deficiencies of the B Complex vitamins, especially niacin, and vitamins A and D often manifest as skin rashes and exacerbate DH.  Recent research has found that treatment with nicotinamide and tetracycline effectively treats DH.  Ask your doctor to check for vitamin deficiencies if you haven't already.  Also dapsone use may cause iron, B12, and folate deficiencies which may lead to anemia.  These should be monitored as well.  

Hope this helps.

 

This sucks,

I want to add to what Knitty Kittty said.

We are the Niacin warriors on this board.

Here is a long but informative thread that talks about where others' have discussed this topic exhaustively.

I also recommend this thread where Knitty Kitty talks about how Niacin helped her itching associated with a DH rash.

I hope this is helpful.

posterboy,

 

elefky Apprentice
elefky
Posted

I was diagnosed with DH in 1995.  I don't remember how long it took to clear up after going gluten-free,  I was taking 100 mg Dapsone, now I take 25-50.   The only true treatment is being gluten-free.  Iodine will not cause a flareup but it can aggravate one.   I don't mind continuing the Dapsone.  It helps with the occasional slip.  But I am as close to 100% gluten-free as possible.

Scuff Apprentice
Scuff
Posted

I'm brand new to all of this, so I probably don't know what I'm talking about ;) Just had the blood tests today. That said, I've had this rash for years, not knowing what it was and have cleared it up (temporarily) with milk thistle supplements (that also contain marshmallow root & dandelion root) . My midwife recommended it to me when I had a PUPPS rash, so I've used it since whenever I had skin issues. 

As for iodine, my dr told me to take it a few years ago when I was having thyroid issues. (a couple good books to read on the subject are Iodine Crisis by Lynne Farrow and Iodine: Why you need it (or somethign like that) by Dr Brownstien) It really helped heal my thyroid and reduce my symptoms. 

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