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KMMO320

By KMMO320
in Dermatitis Herpetiformis

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KMMO320 Contributor
KMMO320
Posted

Does everyone get flares?

I posted before on a different subject but now that I have been doing more reading, I am just wondering if what I experienced a few months ago could all be related..

Around January, I developed this CRAZY rash, like I have never had before. I have had eczema throughout my life but this was NOT the same. It was all over my neck, (front, sides and back of neck), and down my chest. I made sure to wear high collered shirts because I was so embarassed. My husband was always like what IS that? thats so gross!

It was so insanely itchy. I scratched and scratched until I really thought I was going to go nuts. I scratched in my sleep, it woke me up. I woke up with nail marks all down my chest, I woke up with blood all over my shirt. And as it was going away, there were a few blisters that never really broke but never went away. They looked like large bug bites that were scabbed over. Those took a few months to go away.

And then it just all went away. lasted a few months and then...nothing. Vanished without a trace.

During the outbreak, I tried hydrocortisone, calomine lotion, I tried my daughters very expensive Protopic that she uses for her eczema. I tried taking benedryl. nothing was making it stop itching and nothing was making it go away. We switched shampoos, soap and detergents all to sensitive skin/no dye/no perfume. NOTHING was helping.

It just went away on its own. My hands and fingers and elbows are constantly itchy and because I scratch them so much, they are red and blistery, but its not the usual eczema and its not the same as what happened a few months ago.

I have no idea if what happened could have been DH or some other skin condition.

I guess what I am wondering is if DH is consistent, or is it known to appear and disappear randomly, so I can rule it out?

All of my other symptoms that I feel are gluten related appeared suddenly as well, all within the last year.

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rosetapper23 Explorer
rosetapper23
Posted

Your description DOES sound like DH to me--at least, that's how it always presents in my case. For me, an outbreak occurs when I get even the slightest gluten contamination, but it sticks around for a few months because my thyroid medication contains iodine. You see, DH usually needs BOTH gluten and iodine to cause an outbreak. I mentioned on another thread that it's as though gluten lights the fire and iodine continues to make it burn. Because iodine is always present in my body, I have to let the DH run its course. It blisters, scabs over, itches (and is painful), and continues the cycle for about 3-4 months before the memory of the gluten contamination finally leaves. Before I had to take thyroid medication, I was able to control the DH outbreaks completely by avoiding iodine (found in iodized salt, salty snacks, such as fries, chips, crackers, and popcorn, asparagus, and some brands of dairy that contain iodine). That's how my son also avoids outbreaks. He's young, so he tends to cheat now and then and eats or drinks something with gluten in it; however, he doesn't break out in DH because he's good about avoiding all foods that contain it.

In the future, if you get an outbreak of DH, immediately avoid all iodine for a few months, and your outbreak should be shortlived. If you have dark scars from past outbreaks, I've found that applying hydrogen peroxide with a Q-tip twice a day helps them to fade somewhat.

Also, you should switch to all gluten-free products. I use Desert Essence Organics shampoos. Dh sufferers are careful to avoid ANY product that contains gluten.

KMMO320 Contributor
KMMO320
Posted
  • Author

Thanks. I havent seen it happen.before and it hasnt happenes since, so it could be unrelated. I am not gluten-free anymore because I have to be retested.with a new.dr at a Celiac center. I feel like total garbage.right.now but everything.keeps coming negative. I am probably intolerant but I feel like I.need the validation.

squirmingitch Veteran
squirmingitch
Posted

DH can come & go at will. It really likes to torture us & terrorize us. Before I knew what mine was it flared then went away for about 2 months & then flared again & like that. I also read that even after going gluten-free it can present for up to 2 years until all the antibodies get out of your skin. And some sources say it could even take up to 10 years for it to get out of your skin.

I echo what Rosetapper says.

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