Help For The Itching, Stinging, Burning, Pain Of Dh

[sisterlynr]

For me, popping the blisters is not only satisfying but makes the area less itchy and start to heal. I wait until they get to the perfect hardness. Sometimes the blister fills right back up, for as much as a day. Does anyone else find this to be true?

Also, in the summer I was able to get big spears of aloe. I kept it in the fridge and would put it on itchy areas. Worked very well.

I've also found tea tree oil to help with itching.

I first had blisters on the soles of my R foot and had no clue it was DH and neither did many doctors. I would sterilize a needle and puncture the blister to release the fluid. It DID make the itch not as bad. Yes, mine would refill and I would repeat and I also applied athletics foot cream. The salve dried the blister and it would peel as it healed. I would then apply Bacitracin ointment to avoid infection. I have Type II Diabetes.

I then broke out on my shoulder and scalp and still no diagnosis. When my whole body broke out in Mar 2012, there were way too many blisters to break open. Let's just say I was covered like a blanket. I thought of shaving my body. . . was desperate to stop the itch. . . I'm on Dapsone and am recovering!

[Dh122012]

I never had any luck with Triamcinalone (Kenalog) neither the cream or the shot :-/ I didn't get improvement with anything less potent then Floucininide, best result were with Clobetasol Propionate. I found this listing a few years ago and it's really helped me visualize the different strengths of topical corticosteriods. So every time I changed doctors I didn't end up with another low potency cream/ointment under a name I didn't recognize.

Open Original Shared Link

But I must admit I agree popping the blisters is the only relief from the pressure and pain of the blisters. Mine always seemed to fill back up at least once and I'd end up scratching off the scab/crust again. But once they turn into an itchy lesion then the Sarna was a great relief...

Nothing like self destruction to discover a good product. It's like "let me cut myself so I can by these great bandaids" a little different I know, but I still feel like the whole thing is very self-perpetuated.

[Darkfire Ann]

yah Lidex did nothing for me. That is the Floucininide. Super potent steroids did nada. I got stretch marks now le sigh. No relief but my rash went crazy when I stopped using them and I tapered off too.

[Hopeful1950]

Here's something I found that might provide some relief from the symptoms of DH. It's called Neurontin (gabapetin). It is used for restless legs, fibromyalgia etc. It was given to me years ago because of insomnia and fibro. A while back when I was having a really big awful flare of helllish itching, burning DH, I decided to see if it would help and it did! It really mellowed out the night time itching (I took it at bedtime) and seemed to have a lingering effect the next day. It is not a horribly sedating drug so it can be taken during the day if you don't have to drive or anything. It doesn't have any direct effect on the rash itself, just relieves that overall tingling, burning, itching that makes a person want to roll around on astro turf to make it stop.

[sisterlynr]

I can see where Neurotin would help with the symptoms. My Dad had spinal stenois and his legs burned and stung. He took Neuotin.

Just a word of caution while taking this drug. You have to wean off of it or can suffer seizures, which happened to my Dad once. It is helpful to neuropathy patients.

[Hopeful1950]

Wow. The doc that gave me the Neurontin never said anything about weaning off of it! (No surprise there). I think the dose I took was 100mg and I only took it intermittently (not every day) so I didn't have any problems, thank goodness. Thanks for giving us the heads up.

[karinschm]

Hey everyone,

I don't know if someone already posted about this, but anyway, I also have DH (and I am celiac, diagnosed about 1 month ago by a skin biopsy) and found that topical vitamin B5 works wonders for me -- relieves itching, DH heals faster, prevents the appearance of dark spots and scars, with the bonus of not being an irritant agent. Since it acts as a natural anti-everything (anti-inflammatory, anti-allergic and so on), besides being a skin healer and protector, I think it makes sense... Open Original Shared Link.

Incidentally, Vitamin B5 is helping my skin to recover in general -- I always had super dry skin, with acne and red spots due to celiac disease. Once I removed gluten from my diet and started doing a "ritual" of vitamin B5 (nighttime moisturizing mask and body creams), I notice the difference in 1 week!

[dragonsflyfree]

Wow! No one has posted here in a while but I am overwhelmed by the experiences regarding DH, which I am 99% sure I have since I identify with almost everything on this forum. I have been itching insanely for 5 weeks. I have been strictly gluten free for almost 3 weeks but no relief. I have never heard of the iodine perpetuating the skin condition. I eat a lot of eggs and dairy and nuts. I am overwhelmed by the similarities in our ailment and also misdiagnosis'. I have not and probably will not get an intentine biopsy but I am scheduled for a skin biopsy next week. I have been packing my arms, shoulders and wrist in ice for about 5 years now. No topical creams work. Ever. Even a little. Nothing gives me relief but freezing my arms. I am exhausted and frankly depressed about it. Someone mentioned only eating meat, veg, and fruit. I guess I'll try that… hopefully before I go out of my mind.

[squirmingitch]

Your biopsy will come up negative. You HAVE to be actively eating a full gluten diet up to the day of the biopsy. Sorry.

[Rita L]

Does anyone have just swelling with itching?

[Rita L]

Okay. I'm not going to stop dear. I don't think you are disagreeing with me & even if you did ..... it's not against the law. Good things can come from hearty discussions batting things back & forth.

Oh I know the let's blame everything on menopause diagnosis. AND the "let's put you on antidepressants!" Very gleefully said & with a crazed look in their eyes. And how many people on this board who have been told countless times the same things!!!!!!!

And I am not denying you have legitimate pain from damage in the accidents, just plain life & DDD. What I am saying is that I think you will be amazed at how much pain will go away in time, gluten-free, & healing from gluten damage. Let me term it another way ---- despite the experiences I read on this board I never thought so much of my pain would go away simply from being gluten-free. I have been surprised!!!! Verily! I am surprised your neuro isn't apparently aware of just how much gluten affects the neurological aspect.

Have you checked the forum here for good docs in your area? And if you don't find anything there then POST there saying you're looking for a good this or that doc in your area. Also local celiac support groups can be a wealth of information in that regard.

And I understand & agree that it's not smart to blame everything in your medical profile on celiac & possibly missing something important in the process.

But rest assured that healing does happen. Healing takes time but it DOES happen! You can bank on that one.

I sincerely hope that one year from now I will see you posting about how much better your life is than it was one year earlier. There have been many, many who have done so & it is wonderful to read the stories.

Now, I want to address the issue of you eating or rather being afraid to eat or maybe terrified to eat. Honey, You CAN'T be afraid of food! Do not let that devil paranoia take you down!!!!! Do not let it terrorize you. If you do then you are lost. You have to stand up straight, head up, shoulders back & scream that demon down. Go ahead, I dare you.

Do not wait until you're about to faint to eat. Eat regular meals. Not eating like you're doing is not helping to get the weight off. Eating regular meals WILL.

When in doubt I go back to chicken breast (cooked by me), raw veggies and raw fruits.... Gluten can cause so many "other" things" like fibromyalgia... like I have... RA-my mother.

[Rita L]

Your biopsy will come up negative. You HAVE to be actively eating a full gluten diet up to the day of the biopsy. Sorry.

 

Wow! No one has posted here in a while but I am overwhelmed by the experiences regarding DH, which I am 99% sure I have since I identify with almost everything on this forum. I have been itching insanely for 5 weeks. I have been strictly gluten free for almost 3 weeks but no relief. I have never heard of the iodine perpetuating the skin condition. I eat a lot of eggs and dairy and nuts. I am overwhelmed by the similarities in our ailment and also misdiagnosis'. I have not and probably will not get an intentine biopsy but I am scheduled for a skin biopsy next week. I have been packing my arms, shoulders and wrist in ice for about 5 years now. No topical creams work. Ever. Even a little. Nothing gives me relief but freezing my arms. I am exhausted and frankly depressed about it. Someone mentioned only eating meat, veg, and fruit. I guess I'll try that… hopefully before I go out of my mind.

I did my own self test for Celiac and then went to see a doctor. He said, "You don't need a test to tell you that you have Celiac. I'm telling you that you have it. Go home and eat gluten and then come back. But why? Why would you put that much pressure on yourself?" So... I didn't and haven,t regreted it once! Now with the DH, my other doctor agrees with me on it and prescribed Dapsone so I'm giving it a shot.She says also that a test can verify but I have ALL the symptoms and she feels the test is not neccessary. And yes it does suck to eat just meat (I usually go with chicken) fruit and veggies. BUT hey, it if make me feel better then I do it. With Celiac it takes 3 months or more to eliminate the gluten. I drink plenty of water after a cross contamination.

[christinebonner]

I'm new here. I just read all the posts on this thread. I am gluten sensitive with 6 other food sensitivities. After tests results came back with sensitivity results, I went gluten free for 3 weeks. Then went on vacation and ate lots of gluten.(San Fran-home of sourdough bread.) After 1 week vacation I came home and immediately started back on gluten free diet. Broke out with DH. Severe for a few weeks-burning, hot to touch, some bleeding, etc. Since then I have had a slight rash with intermittent flareups. I went gluten free 7 months ago. How long do you think this rash will last?? Even my naturopath thought it would be gone by now.  I can't use the hot tub at my health club. I swim, but the water aggravates it. Any time I get anxious it flares up. I need to swim. This whole "adventure" started with bad osteoarthritis and swimming helps it. As a side note-the most severe arthritis (difficulty and pain walking down stairs, extreme fatigue at end of day) went away after 3 weeks gluten free. The rest of the arthritis still remains, but I haven't given up a few of my sensitive foods yet. The rash makes me feel as if all this careful eating/eliminating favorite foods was not worth it. How much longer???

[kareng]

I'm new here. I just read all the posts on this thread. I am gluten sensitive with 6 other food sensitivities. After tests results came back with sensitivity results, I went gluten free for 3 weeks. Then went on vacation and ate lots of gluten.(San Fran-home of sourdough bread.) After 1 week vacation I came home and immediately started back on gluten free diet. Broke out with DH. Severe for a few weeks-burning, hot to touch, some bleeding, etc. Since then I have had a slight rash with intermittent flareups. I went gluten free 7 months ago. How long do you think this rash will last?? Even my naturopath thought it would be gone by now.  I can't use the hot tub at my health club. I swim, but the water aggravates it. Any time I get anxious it flares up. I need to swim. This whole "adventure" started with bad osteoarthritis and swimming helps it. As a side note-the most severe arthritis (difficulty and pain walking down stairs, extreme fatigue at end of day) went away after 3 weeks gluten free. The rest of the arthritis still remains, but I haven't given up a few of my sensitive foods yet. The rash makes me feel as if all this careful eating/eliminating favorite foods was not worth it. How much longer???

 

 

While you are having a new outbreak, maybe you should go to a dermatologist and get them biopsied.  Make sure it really is DH.  Sounds like it might be a reaction to the pool water?  Maybe you have something else going on that you could fix.  

[squirmingitch]

As long as you are eating gluten-free or gluten light the dh biopsy will turn up negative so if you want a biopsy you have to eat gluten for roughly 2 months. 

I'm sorry but you say you feel like all this careful eating/eliminating favorite foods was not worth it but you did NOT eliminate gluten b/c you went & ate it. If it is dh then you MUST be 100% gluten-free ALL THE TIME & that includes trips to San Francisco eating sourdough bread. You either eat totally gluten-free or you don't bother at all. Cheating on the diet is NOT an option. If it is dh then you can NEVER cheat. DH can present for years after being strict gluten-free. You need to decide here & now if you're going to get serious about this.

With dh, the gluten antibodies are deposited under the skin & you will continue to have flare ups until all those antibodies get out from under your skin. This is not like a light switch that you can turn on & off by eating gluten one week & not the next. 

Further, gluten sensitive people do not get dh. Celiacs can have dh. You say the testing came back with sensitivities. What kind of tests? 

[rhondaridesahonda]

im very new, like 3 week s new to the celiacs "curse" ive had itchy rash covered legs and arm for about 4 years on and off, i found that applying neosporin eczema essentials lotion every night at bed time helped so much!! thank you all i look forward to your support, and hope to reciprocate!! have a good non itchy day!!

[Robins1668]

It took two years for my DH diagnosis to come to fruition.

I'm 46 and started having food related allergies 3 years ago. Had hives for years.

Finally had a caring Dermatologist do a skin biopsy and confirmed DH. Was so relieved and totally thought I would get better. Wish someone would have told me that was a misconception.

I have fatty liver disease so the first time I was put on Dapsone my liver about killed over.

But now we have found the right dosage to actually help a little.

All my other food allergies-dairy, soy, vinegar now manifest the same way as DH.

But I'm a fighter and will not let this disease win.

I love to cook and now know how to do so, so I can enjoy food again.

So thankful I found this forum. Everyone needs love and support. It's amazing to know I'm not alone.

I agree Ice is our friend. So ir triamcynlone and lidicane.

My dapsone dosage was just raised from 100 mg a day to 200. Here's hoping that will really help. (Watching my liver closely)

Thanks!

Robin

[squirmingitch]

Welcome to the forum Robin! Hang in there. It can take a while. Keep a close eye on that liver for sure. I'm glad you finally got a dx. That's a FEAT!