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Another One Via The Scabies Route


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3 replies to this topic

#1 jlaw

 
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Posted 31 July 2012 - 11:18 PM

Hi friends. Just wanted to introduce myself as a newly diagnosed coeliac. I have been reading the forums for weeks while I was treated for scabies (sure that it wasn't scabies), and am so thankful for all the help I received just from you all being open. It gave me the knowledge and confidence to keep pressing on despite the initial scabies diagnosis ('no, it's definitely not DH"), and negative blood test results. Thank you. So much more helpful than medical sites! I am an Aussie living in India and was diagnosed by skin biopsy with DH yesterday. Looking forward to actually contributing from now on!
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DH dx by skin biopsy July 2012

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#2 jerseyangel

 
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Posted 01 August 2012 - 06:37 AM

Hi jlaw and welcome to the board. Let us know how we can help:)
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"Life is what happens while you're busy making other plans"

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#3 Bubba's Mom

 
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Posted 01 August 2012 - 10:39 AM

Hi friends. Just wanted to introduce myself as a newly diagnosed coeliac. I have been reading the forums for weeks while I was treated for scabies (sure that it wasn't scabies), and am so thankful for all the help I received just from you all being open. It gave me the knowledge and confidence to keep pressing on despite the initial scabies diagnosis ('no, it's definitely not DH"), and negative blood test results. Thank you. So much more helpful than medical sites! I am an Aussie living in India and was diagnosed by skin biopsy with DH yesterday. Looking forward to actually contributing from now on!

Hello..and welcome! Congratulations on pushing for the tests you needed to know what to do to keep yourself healthy. :D
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#4 Azuremackey

 
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Posted 08 August 2012 - 08:45 AM

Hello Friends,
This is just my second post but I saw this topic and had to post this because I too was diagnosed with scabies but only tried that treatment once. I was adamit with my doctor that it had to be something else because i have a family and none of them had any symptoms. I hope my journey to diagnosis can help a little!
I have been diagnosed for just over 3 months. I was diagnosed via blood work, biopsy, then another biopsy, immunofluorescence biopsy and upper GI. LOL it has been quite a journey. I had DH so bad that I was initially diagnosed with scabies (Treatment bombed), then Chicken pox , after 2 weeks of more pox breakouts my Doctor decided to do further testing… WOW what a concept! I was tested for everything except DH. I was told it was pustular psoriasis, put on prednisone and an allover body lotion (that burned off the tops of the blisters and left me raw from head to toe) and referred to a dermatologists. My first skin biopsy that came back with 3 possible autoimmune diseases bullous pemphigoid ( this is typically found in people over the age of 60 I am 35), DH and another that did not fit the symptoms. My doctor started treating me for the pemphigoid because he did not believe that DH could be as bad as mine. I obviously did not stay clear soon after prednisone was completed I was covered in DH again. I was lucky to have a good dermatologists but it took several months to get to the proper diagnosis. While DH is HORRIBLE I am almost thankful for it as I have also had severe intestinal issues for about 7 years but I was always told it was stress, IBS etc… I just learned to live with it. Im sure I’m preaching to the choir with all of this!! Since my diagnosis I am 100% gluten-free and I have taken the Dapsone treatment for 30 days once with some relief. gluten-free has equaled almost a total reversal in my intestinal issues and that is a huge blessing but my DH is still reoccurring. The biggest relief is that new breakouts start and end within 3 days and are on a much smaller scale. I am struggling to eat anything other than Cheese, meat, rice, Kale, bananas and red potatoes but have still not gotten my DH under complete control. I’m struggling to consume more than 600 to 800 calories a day. I NEED ADVICE!!! I am just at a loss as to what a normal diet for a person with celiac and DH of the “most severe sensitivity “ is supposed to consist of. I have replaced all of my dishes, deep cleaned my kitchen, I am also the only person that I allow in my kitchen just to be sure there is no cross contamination. I am willing to try just about any new food and food combination to get this under control. I am open to any and all suggestions.
Thank you for any advice!
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