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Jlewisrn

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I have suffered with a rash for about a year. I am currently on prednisone that has cleared it up (for now) I have posted here before... but my question is about my 21 year old daughter. She thought she got bit by a spider. But the blisters have spread. She has it in her ankle, calf, upper leg and buttocks. Mine hasn’t been confirmed as dh but hers looks text book to me. Mine was more all over and rash like.  They all laugh at me because tbey think I think everything is caused my gluten ( I don’t) I just know my body. Anyway, what do y’all think? I have more pictures but it won’t let me upload them. The other ones I have a very much fluid filled blisters. Some have popped and more have appeared around it. They do itch her badly. She said “I’m skrry you ever had to deal with that rash. I literally feel like I’m dying” 

2D0DE2D1-C7E5-46F0-BFD3-0D937938AB33.jpeg

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2 hours ago, Jlewisrn said:

I have suffered with a rash for about a year. I am currently on prednisone that has cleared it up (for now) I have posted here before... but my question is about my 21 year old daughter. She thought she got bit by a spider. But the blisters have spread. She has it in her ankle, calf, upper leg and buttocks. Mine hasn’t been confirmed as dh but hers looks text book to me. Mine was more all over and rash like.  They all laugh at me because tbey think I think everything is caused my gluten ( I don’t) I just know my body. Anyway, what do y’all think? I have more pictures but it won’t let me upload them. The other ones I have a very much fluid filled blisters. Some have popped and more have appeared around it. They do itch her badly. She said “I’m skrry you ever had to deal with that rash. I literally feel like I’m dying” 

2D0DE2D1-C7E5-46F0-BFD3-0D937938AB33.jpeg

I could not see the photo, but rashes can look alike.  Consider a celiac blood test panel and a skin biopsy by a celiac-savvy Dermatologist.  

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Darn! I can still the one photo. Hers are blisters not a rash. Mine was more rash like blisters. Hers are sporadic and mine was wide spread. 

98A6EAB4-DB76-4F12-A364-34A166B357F9.jpeg

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From what other members have said (read through the DH section), you can not diagnose DH just visually.  A skin biopsy is needed.  DH is celiac disease, but it resides in the skin.  Some folks with DH have intestinal damage as well.  That is why I suggested a celiac blood test.  Others who have DH might not have any intestinal damage.  Doing the biopsy is tricky even for a dermatologist, so find a celiac-savvy one or read through the DH section to find out exactly where the biopsy must be taken (I think on clear skin adjacent to the rash) and let your dermatologist known.  Lots of bad biopsies have been taken and the poor person has been left in diagnostic limbo.  

 

 

 

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I have done extensive research and have been to multiple drs for the rash I have (several allergists, a few dermatologists, my PCP) I have been diagonisied with everything from scabies, medication allergy (I don’t take any medication), and eczema. When I do an elimination diet it goes away. When I went on vacation for a week and was eating out every night it was the worst it has ever been.thats why I stared then prednisone. It was absolutely awful. I have thought from the beginning that it was somethings I was eating. Now my daughter is getting this fluid filled blisters on her legs and butt. They itch and ooz and pop and then comes back with more in the same area. I have tried desperately to get an accurate diagnosis but it is proving impossible around where I live. 

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Okay, then if you suspect gluten as the culprit, then trial the diet until you see results.  This can take six months or longer.  If the diet works, you really have your diagnosis.  

I get not having medical support.  My hubby 17 years ago was advised to give up gluten by two medical doctors.  It worked!  There was a trial and error, but it was obvious that gluten was the culprit.  Does he have celiac disease?  Who knows?  But he feels good.  It would be nice to have a firm diagnosis, but after all these years it is not going to happen.  

So, read up on DH.  Follow the tips (I think following a low iodine diet for a short time can bring faster relief).    Read the Newbie section and do not go out to eat until you are well.  Know that DH does not always ramp up fast, so trying to figure out what glutened you might be difficult.  I do not have DH, so I am speaking based on what others have posted and who have DH.  

I wish you well!  Ask questions, we are all here to help each other, even if it is to vent!  

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