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Hey @suek54, I also have Dermatitis Herpetiformis. I used to be on Dapsone but have managed to wean myself off it after many attempts. It's quiet a toxic drug, as it affects the bone marrow and red blood cells. It also artificially reduces Hemoglobin A1C. Mine was at 21 at one stage, I think normal is around 37. With dermatitis herpetiformis, you need to be really strict. It wasn't until I focused on getting the trace minerals the body needs that I managed to get off it. I believe getting the thyroid numbers in the optimal range also helped with Iodine and Selenium. Iodine doesn't bother me for some reason, but flares others as knitty kitty said. I take Viridian Trace Mineral complex and it's made a huge difference, among other vitamins and minerals. Now I can tolerate gluten free oats which I could never eat before. Though I only have them very occasionally in the form of gluten free soda bread . One thing I miss is my Mums Irish soda bread. Hope this helps.

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 nowhere near as severe as they were, so I am hoping for an increased dose, as the effect only seems to last 6-7 hours.  I think I may be burning through it more quickly than some due to other medication. Also I cannot mount a response to inflammation due to Addison's Disease.  I hope others are finding their way though the minefield that is dermatitis herpetiformis. Hang on in there! Sue (in UK)

@KeriRae, have you been diagnosed with celiac disease or with dermatitis herpetiformis?

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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