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An Answer After 2 Years?

greensleeve

By greensleeve
in Dermatitis Herpetiformis

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greensleeve Newbie
greensleeve
Posted

I've been trying to figure out what's going on with my skin for two years. The story will probably sound familiar. I got a cluster of weird bumps on my face, and they wouldn't go away. I've never had acne or other skin problems. The bumps slowly spread all over my face, ears, neck and scalp. I also developed hives all over and no amount of scratching worked. The itching is intense and awful. The facial bumps often look like mosquito bites, and sometimes they look like p%$#@#/crusty bumps. They sting and itch unbelievably. I've been to four doctors, I've had allergy testing, which was positive for wheat, eggs, peanuts and milk. I've stumped two derms, my GP and just quit asking the ENT doc. Allergy shots, antihistamines, anti-fungal, antibiotics, acne meds, rosacea cream....none worked. I am handed a steroid cream and told to rock on. The cream helps some, but the weird bumps return worse than ever when I stop. I know it is not good to use steroids long term. What's a girl to do? I've got to go to work and face my customers.

So, I continued my own research. Based on the fact that I am hypothyroid, had extreme Vitamin D deficiency, insomnia, dizziness, wheat allergy, and gas that would embarras a lumberjack...I found this forum and a wealth of info on the net. I think I might have found an answer, and it certainly warrants further research into this topic.

I'm not concerned with testing/diagnosis at this point. I'm sick of dealing with docs and being handed an RX for some other drug. I want to learn more about DH and eliminate gluten and see if there's any improvement.

I am very frustrated and very much appreciate all the info I've found on this forum.

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squirmingitch Veteran
squirmingitch
Posted

Sounds like you have your answer! Everything you've stated fits dh & therefore celiac. Welcome to the board & the club. Read on here as much as you can. That will give you the info. you need. Here are a few links to get you started:

https://www.celiac.com/forums/topic/95643-interesting-reading-on-dh/

https://www.celiac.com/forums/topic/94056-dh-photo-bank/

https://www.celiac.com/forums/topic/95809-a-break-out/

https://www.celiac.com/forums/topic/78144-dh-and-iodine-what-is-the-connection/

https://www.celiac.com/forums/topic/89923-iodine-levels-in-dairy-products/

https://www.celiac.com/forums/topic/91878-newbie-info-101/

https://www.celiac.com/forums/topic/84513-descriptions-of-dh-types/

Any questions --- we are here.smile.gif

jmb002 Newbie
jmb002
Posted

I am dealing with the same exact problem currently (although I have only had it for 3 months and am going crazy)! Hope you get some relief. I am still trying to get someone to listen to me and make a diagnosis rather than try and mask the symptoms with medications such as prednisone! I just started my second taper of prednisone and symptoms are coming back faster than ever! Good luck!

Jenn

GFinDC Veteran
GFinDC
Posted

To test for DH they take a biopsy sample of the skin next to a lesion., not the lesion itself. A positive for DH is a positive for celiac.

ciamarie Rookie
ciamarie
Posted

I agree with the others, sounds like you're in the right place! I did want to let you know that when I had it on my face a few years back, one thing that did help somewhat was proactive solution. Then after I got home from work I'd wash off the makeup and put some calamine lotion on the itchy areas. It helped enough that I only have some minor scarring on my chin; though I also did my best not to do much scratching.

greensleeve Newbie
greensleeve
Posted
  • Author

Thanks everyone for the replies. The iodine connection makes a lot of sense to me. I have very low blood pressure and eat sea salt as needed at each meal. Will also cut it out and see what happens.

Jenn, I understand about the oral steroids. I can't tolerate them....found out the hard way. Sometimes cold water is the only thing that will make my back stop itching. I hope you find some relief.

squirmingitch Veteran
squirmingitch
Posted

Help for the itch, sting, burn & pain of dh:

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YoloGx Rookie
YoloGx
Posted

Definitely gluten can be a huge factor. However for me I have also had food sensitivity trouble with a variety of natural food chemicals--namely salicylates, amines and tannins. Hope you don't but just wanted to let you know its possible.

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