Doctor Visit Today - Totally Mortified (:

[Hopeful1950]

Me 5!! When my DH was at it's worst with oozing lesions I never got a secondary infection either. I have always tried to keep hands/nails clean, but as you all know sometimes when the itch was sooooo bad I didn't care about stuff like that.

[pricklypear1971]

Steroids and antihistamines both suppress the immune system to a degree. I don't know exactly how it works with dh, but personally, I got in a vicious cycle with antihistamines and steroids - and it did a lot of damage to my adrenals and not much for my rash. My rash receded with prednisone and steroid shots but I also was tripping 24/7, and my blood sugar became unstable.

Topical steroids will keep the rash dampened. Multiple antihistamines will do the same. In combination it may help. But you can't keep it up forever.

I had success with going gluten-free (rash didn't get worse, and reduced quite a bit), and then got off the steroid cream after a few months. My rash healed and then blew up when I added an iodine containing multivitamin. In the interim, I was sensitive to other things like msg or artificial preservatives in gluten-free food. Then I tried low iodine and it worked instantly. My rash (which looked like someone had burned my skin with a curling iron) healed in 2 weeks and I was able to add back iodine foods slowly.

If you are already mostly gluten-free, try going all the way. Do you screen your beauty and bath products? People with DH seem to be particularly sensitive to topical gluten. I'd also try limiting iodine - I know it sounds hard especially with other limitations but it can be very effective and worth it.

You may be in the middle of an autoimmune "flare", for lack of better terminology. That's what happened to me- it all came crashing down and my body became covered in a rash, I was dizzy, hypoglycemic, etc. I don't know what was triggered by Celiac/autoimmune and what was my body reacting to the steroids but it was one big mess. I cleaned up my diet, got off the meds and slowly I'm bouncing back. I sincerely hope the same for you, too.

[Di2011]

Seems a lot us 'bad' cases of DH have been similar experiences. Lots of ups & downs on the roller coaster road but some definite "indicators" along the way.

I have always avoid medications etc so I can't comment on topical or oral medications but the two dermatitis specific cream/lotions I tested early in my journey made my skin scream like a cornered crazy psycho. After that I chose to go with my instinct that this was no typical skin condition that was known in traditional medicine. Call it 'dermatitis' herpetiformis if you like but it was certainly not 'dermatitis'.

I wonder if in 20+ years time it will be renamed to remove its association with dermatitis altogether - I pray that it is known and understood well enough to be so.