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How Long Before Relief

sawgrass

By sawgrass
in Dermatitis Herpetiformis

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sawgrass Rookie
sawgrass
Posted

I have recently found I have DH.

Can anyone tell me how long before some relief is noticed?

I have been gluten-free for two weeks and not much has changed.

Trying to avoid Dapsone. Sawgrass

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Guest nini
Guest nini
Posted

I wasn't dx'ed with DH, I was dx'ed with Celiac, but I did have rashes all over my face and arms... I would say that I started to notice an improvement within 3 or 4 weeks, BUT didn't really START feeling better or notice the rash was gone until 6 months into the diet. I don't know much about Dapsone, so can't help you there, I would just say, hang in there with the diet and you will start to notice a difference, just give it time.

Ursa Major Collaborator
Ursa Major
Posted

Unfortunately, the DH is caused by gliadin deposits under the skin, and can take up to 2 years to clear. Meaning, that for that amount of time you can still get outbreaks of the rash. For most people it clears up within a year, though, while for some rare people it can take up to five years.

Mine started getting better within a couple of months, but after now eight months still get outbreaks (especially after being glutened).

So, don't measure how well you do on the gluten-free diet by how much your rash has cleared up. It may not for quite a while. Keep plugging away and don't get discouraged, it will get better eventually.

Dapsone supposedly helps, but is very hard on the liver, and you would have to be very closely monitored being on it. Personally, I wouldn't even consider it. But then, my DH isn't nearly as bad as it could be, just annoying (fortunately, I rarely get so itchy that I can't sleep at night).

lindalee Enthusiast
lindalee
Posted
I have recently found I have DH.

Can anyone tell me how long before some relief is noticed?

I have been gluten-free for two weeks and not much has changed.

Trying to avoid Dapsone. Sawgrass

I am assuming that I had the DH . My stomach broke out and itched terrible which actually got me to think I really didn't outgrow celiac disease. Thank God I went gluten-free because I was so tired. All the research I have done say nothing about the lower stomach area for a rash. Has anyone had it there???? I listen to Dr. Becker on "Your Health" and ordered some oil of oregano from him and it has helped clear it up . I also am taking his probiotics. I was totally miserable with the itch. I still get a little itch but almost gone. I don't take any medicine. I am also taking milk thistle to help my liver get rid of the toxins. When I was diagnosed when I was a baby at John Hopkins they told my mom to keep me gluten free for 2 years. Now I know it is for life. lindalee

tarnalberry Community Regular
tarnalberry
Posted

DH can take quite a while to clear up, because it's caused by deposits under the skin. Making sure to stay away from *all* gluten (including those pesky hidden sources and cross contamination) permanently, and drastically limiting iodine (an element in the reaction that forms the deposits) until it heals, is about all you can do.

KaitiUSA Enthusiast
KaitiUSA
Posted

With everyone the time when they see a difference is different. I know I felt better after about 3 months but really didn't get back to normal for about 8 months or so. Some people see a difference pretty quickly though. Now, I know for DH it can take time to clear up so hang in there. Also, you need to watch gluten in products as mentioned before because that will make DH appear.

sawgrass Rookie
sawgrass
Posted
  • Author
With everyone the time when they see a difference is different. I know I felt better after about 3 months but really didn't get back to normal for about 8 months or so. Some people see a difference pretty quickly though. Now, I know for DH it can take time to clear up so hang in there. Also, you need to watch gluten in products as mentioned before because that will make DH appear.

Thanks to everyone :D For the info, and support!!!

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Pegster Apprentice
Pegster
Posted

Sawgrass: I was lucky in that my DH cleared up almost immediately. Unfortunately I get little random outbreaks every now and then, but rarely is it really terrible. I have been gluten-free for over two years now.

Lindalee: I have had dh on my lower stomach, particularly on the sides around where the elastic is on bikini underwear. It's miserable to get it there because it's irritated constantly by my clothes. I use steroid ointments to calm it down.

Franceen Explorer
Franceen
Posted

My DH was absolutely AWFUL and EVERYWHERE. I had it on my belly halfway between crotch line and belly button. I have scars there. I also got it at the underpants line/crease. Awful for the reasons noted!

I had it bad on shins, forearms, back (upper and lower), shoulders, upper arms near armpits and thighs.

I've been gluten free since December. Took Dapsone for 4 months until I nearly died from it (Sensitivity reaction with liver and horrible and different peeling-skin rash).

I had to take Prednisone to help stop the itching. Now I am oral meds free, gluten-free and only have minor new rash on hands/wrists (probabaly contact dermatitis from soaps, but maybe DH). My shins are still healing - but I am MUCH MUCH better. My doctor gave me a very very expensive (but insurance pays) NEW steroid FOAM (it's Betamethasone which doesn't work in cream form for me). This stuff is called "Luxiq" and it is really helping clear up the remaining rash because it stops the itch and I don't scratch as much and get scabs, etc.

But the NEW rash has drastically diminished. I'm keeping my fingers crossed the the gluten-free really keeps working. One of those "famous Dr's" (the one that's an expert on DH) has a website and says on it that after on has really been gluten-free enough for the rash to be totally gone, small amount of accidental glutening should not cause a flare. Also after rash is gone, iodine ceases to be a problem. We'll see!

Pegster Apprentice
Pegster
Posted

Franceen I feel your pain (and itch)! I'm glad you're clearing up. It's a miserable feeling to itch all day and night long.

sawgrass Rookie
sawgrass
Posted
  • Author
Franceen I feel your pain (and itch)! I'm glad you're clearing up. It's a miserable feeling to itch all day and night long.

This itch is driving me crazy.Today is the worst so far. I am not sure if I ate some gluten or if this is normal.

I am trying to avoid Dapsone and have been gluten-free about a month.Anyone have a suggestion??? Jeff

Pegster Apprentice
Pegster
Posted

My feeling is that dh can actually get worse for a while as the body is ridding itself of the gluten. Also, as you go gluten free, smaller and smaller amounts of gluten will cause a reaction. Watch for anti-inflammotory drugs- they can cause flare ups for some reason even if they are gluten-free. Also iodine can be a culprit. Now as for relief...I KNOW I will get some negative responses from this but I use Aveeno oatmeal baths when I'm really bad. Yes, I know oats are iffy. I never eat them, but soaking in the bath makes me feel so much better when I have a flare up. It calms the itch and keeps me from going crazy and I've never had to use Dapsone. So if you're really suffering, you might consider it. :blink:

Franceen Explorer
Franceen
Posted

Yes, mine did get worse before it got better.

The steroid foam ("Luxiq") that my Dr. gave me is the FIRST and ONLY steroid cream that helps the itch. It is VERY expensive, but my insurance is paying for it. (It is over $150 for one can which lasts me about 10 days). That's drug company robbery for sure, but it WORKS.

I don't seem to have a "flare problem" with NSAIDs - and Ibuprophen really stop my itch for about 4 hours, so when DH was at its worst I took that about 3 times a day.

Soaking in a bath (no matter what with) always helps me in the short term but hurts in the long run because it is very drying.

I did not know that Dairy had Iodine! That could be a problem (or could have BEEN) because I eat/drink a lot of dairy.

I have ONE spot of horrible itch left and some contact dermatits on my hands. That is from putting them in water too much and with dish soap. Hard to control. I also react to the soap in public restrooms and to the hand sanitizers and the water makes it worse.

Best of luck to you. Try NOT to SCRATCH (it makes it spread and makes it itch MORE, and gives you scabs and scars! I know, been there did that. And the "scar gels" make me break out again!

Franceen

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