I'm curious if anyone has dermatitis herpetiformis and won't mind sharing with me your experience with it. I'm trying to get things figured out for my youngest daughter, who is 19 months old. She has been to an allergist and GI, then we moved and I'm getting her re-established with new doctors. She has seen the allergist here. Her new GI appointment isn't until next week. She has had skin and blood test done for allergies, but they have come back negative. Which I do know if it is a gluten intolerance or celiac, it won't show up on an allergy test, right? I still don't give her gluten though and limit her dairy. Every time she eats gluten, her bottom breaks out horribly. She has loose stool almost all the time, restless, doesn't sleep well, and is more fussy. And when she has too much dairy, she reacts badly too. And she has thrown up the 3 times she has had soy formula or soy milk. so, I don't give her soy either!
About a week after our appointment with the allergist, he called to follow up! First of all, I was shocked he called. Then he gave me a name of something he thought could be explaining her skin issue... Dermatitis herpetiformis. But he wasn't sure because she only gets it on her bottom and not on her knees and elbows. He said to tell the GI doctor when we see her next week. My daughter has gotten blisters on her check 2 or 3 times, but at the time I thought they were cold sores, but they were really bad? I'm assuming she won't have to have it in all areas, would she? When I got online to do some research, I came across photos of this skin condition and the open sores and redness look just like what she gets when she eat gluten. I don't know if they blister first. Maybe the blisters burst before I remove the diaper? If she doesn't eat gluten, her bottom is clear. But I can guarantee if she has some gluten, her next bowel movement will mean she will get these sores/rash on her bottom.
If you have this skin condition, would you please share your experience with me? I'm trying to help out my daughter and find answers for her. I want to go well prepared for this appointment, especially since I have to drive 2.5 hours away for it!
Thanks in advance!
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