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DH?? (Look like bug bites)

Ladybug99

By Ladybug99
in Dermatitis Herpetiformis

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Ladybug99 Rookie
Ladybug99
Posted

hello, my daughter is 4 and has been getting what I originally thought were bug bites for a few months now, and they are worsening with each exposure. She is very newly diagnosed and I'm still learning. 

I believe she gets these in relation to when she was getting "glutened" and they come for about 2 weeks. 

She used to just get one or so at a time but she currently has probably 30 "spots". They are ALL over her body including scalp, pubic area, buttocks, trunk, back, etc 

They start as raised, red round spots, then form more to like a blister (very hard to describe) then they kind of scab over and eventually go away (leaving a brown skin discoloration for a while) they didn't used to itch but they do now. 

Open Original Shared Link

they basically look like bug bites... Has anyone had a similar experience ??

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Ladybug99 Rookie
Ladybug99
Posted
  • Author

Open Original Shared Link << uploaded via tinypic 

squirmingitch Veteran
squirmingitch
Posted

This looks exactly like what I'm going through right now. I got cc'd some time ago & am dealing with the rash. It has ramped down now to appear just as your daughter's.

You have to make sure she doesn't get the tiniest amount of gluten. Whole foods only. Forget processed gluten-free foods for now. Also make sure she doesn't have oats for a full year. Just get her on fresh or frozen fruits & veggies, canned things like Hunt's tomato sauce are okay, canned Bush's beans are gluten-free too. Forget the processed cereals. Give her eggs, potatoes, meat for breakfast - some fruit. Dairy if she can tolerate it. Fresh meats are fine or frozen stuff like turkey. 

Make sure to read the Newbie 101 in the coping section to learn how to protect her from cross contamination.

  • 1 month later...
DandelionH Apprentice
DandelionH
Posted

This is EXACTLY what happens to me. It has twice now and both times was after both glutening episodes but once it was the day after and the other time it was a week and a half. So I'm still not sure if it's related or strange bug bites...

Did they stop happening when she stopped being glutened? Did you decide they were definitely related? I'm really confused by this and would love to know whether to insecticide my house or....
:P

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    • suek54
      Awaiting dermatitis herpetiformis confirmation following biopsy

      By suek54 · Posted

      Many thanks for your reply Rogol72.  People have been very kind and made all sorts of suggestions. I am bearing them all in mind but at this early stage just desperately need to be itch free.  I have literally had this horrid rash from scalp to feet. My most recent outbreak was all across my face as well. At one stage it was so widespread I was having very bad thoughts. Dapsone has changed that.  I think my situation is worsened by Addison's Disease. I am totally steroid dependent. Its a constant trade-off between increasing steroids to cope with dermatitis herpetiformis vs increased risk of high steroids. I also have hypothyroidism. In fact dermatitis herpetiformis is my fifth autoimmune condition.  Hey ho, I'm muddling through. Its nice to hear that others with the condition have found various ways to get back on track.  I don't want to be on Dapsone a day longer than necessary but it's far better than the awful state I was in.  My dermatologist is keeping a close eye on my bloods. So far, so good.  Thank you again for your advice. Very much appreciated.  Sue    
    • Rogol72
      Awaiting dermatitis herpetiformis confirmation following biopsy

      By Rogol72 · Posted

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    • suek54
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      @KeriRae, have you been diagnosed with celiac disease or with dermatitis herpetiformis?
    • KeriRae
      DH Photo Bank

      By KeriRae · Posted

      I've had this same rash on my back on and off for the last year or two.  I was taking LDN to help with other issues but quit awhile back. I'm wondering if LDN would help with this rash. 
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