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suek54

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  1. icon Scott Adams reacted to a post in a topic: Shaking/Tremors and Off Balance
  2. suek54 started following Awaiting dermatitis herpetiformis confirmation following biopsy , Shaking/Tremors and Off Balance and Need advice for some relief!
  3. suek54
    Hi Ginger38 Well done you for pushing through the pain barrier of eating gluten, when you know each mouthful is making you poorly. I went through the same thing not long ago, my biopsy was for dermatitis herpetiformis. Result positive, so 95% certain I have gut coeliacs too. But my bloods were negative, so very pleased I went for the gluten challenge...
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  6. suek54
    Thank you Knittykitty. That's a lot more reading to help me understand dermatitis herpetiformis. Its a steep learning curve. Im guessing you are in the US? I can definitely ask for those tests but in the UK currently the NHS is under such pressure, with such huge backlogs, I'm not sure whether I stand much chance of getting them. Still, we can but ask...
  7. icon Scott Adams reacted to a post in a topic: Awaiting dermatitis herpetiformis confirmation following biopsy
  8. suek54
    Brilliant info Rogol72, thank you. I have further derma and endo appointments at end April/beg May. I need my B12/B9 results before any supplementing as they have been on a downward trend. My brother had pernicious anemia (another autoimmune) so I need to eliminate that first. Thanks again. Sue
  9. icon Scott Adams reacted to a post in a topic: Awaiting dermatitis herpetiformis confirmation following biopsy
  10. suek54
    Hi May I ask how long you have had dermatitis herpetiformis and how long you have taken Dapsone for? All the info online seems to suggest needing Dapsone for between 1-2 years, gradually reducing thereafter. Is that your experience? Sue
  11. suek54
    Hi Rogol72 Thanks for your reply. I understand UC is pretty awful. Sympathies on that one. I mustn't take NSAIDS either. Everyone who has replied to my posts has made various suggestions to improve the joy that is dermatitis herpetiformis and I have slowly been reading about them all. Possible iodine reduction was one of them. Boosting various...
  12. suek54
    Hi again, I have been reading a bit about iodine, some of you have helpfully suggested should be minimised to relieve the symptoms of dermatitis herpetiformis. I don't think I have a very high iodine intake but probably reach the recommended daily requirement every day...I love dairy, eggs and fish. I have had hypothyroidism (autoimmune)for around...
  13. icon Scott Adams reacted to a post in a topic: Awaiting dermatitis herpetiformis confirmation following biopsy
  14. icon Scott Adams reacted to a post in a topic: Awaiting dermatitis herpetiformis confirmation following biopsy
  15. suek54
    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...
  16. suek54
    Hi all Biopsy confirmed dermatitis herpetiformis. Strict gluten free diet going OK, I cook nearly everything from scratch anyway and am finding gluten free adaptations for most recipes. I seem to be tolerating 50mg Dapsone well, regular blood tests OK so far. Next derma appt in 8 weeks. I have some continuing itching and rash outbreaks, though...
  17. icon Scott Adams reacted to a post in a topic: Need advice for some relief!
  18. suek54
    Hi Kayla Huge sympathies. I was diagnosed in December, after 8 months of the most awful rash, literally top to toe. Mine is a work in progress. Im on just 50mg dapsone at the moment but probably need an increased dose to properly put the lid on it. As you have been now glutened, I wondered whether it might be worth asking for a skin biopsy to finally...
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  21. suek54
    Wow KK, thank you so much for all your attached info. I had a very quick scan but will read more in depth later. The one concerning corticosteroid use is very interesting. That would relate to secondary adrenal insufficiency I think , ie AI caused by steroids such as taken long term for eg asthma. I have primary autoimmune AI, my adrenals are atrophied...
  22. suek54
    Thank you all for your advice and the dermatitis herpetiformis article. The latter made me realise I had stopped taking my antihistamine, which I will restart today. The Dapsone has cleared the rash entirely but I still get quite a bit itching, absolutely nothing to see though. I know its notoriously hard to clear and its still relatively early days for me...
  23. suek54
    Hi, Yes, the rash has gone. I still get the itches but there is nothing to see now, apart from a lot of discoloured areas where the rash was worst. Occasionally I get a single lump come up, a bit like hives, but no bigger than a pea and it goes after 24hrs and a steroid cream application. And yes, giving the gluten-free diet 110%. Very careful...
  24. suek54
    Hi Im new to this game, so bear with me. May through to December last year totally miserable, covered literally head to toe in the worst rash ever, itching like I just cant explain. After seven different medics told me just to "keep putting the cream on, whatever it is will go in the end" finally one lovely doc diagnosed dermatitis herpetiformis...
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