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Oh The Agony

wera9666

By wera9666
in Dermatitis Herpetiformis

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wera9666 Newbie
wera9666
Posted

My DH flaired up for the first time in 6/09. After several Dr trips DH was mentioned to me for the first time 09/09. Although my blood tests and biopsies are all neg, my derma Dr and Dr Fasano at the UMD Ctr for Celiac Research are 98% on the diagnosis. I have lived strictly gluten-free since 11/09 and have taken Dapsone now for about 5-6 months. The Dapsone did a good job alleveing me of 95% of my outbreak and would only get a little on my scalp and face. 2 weeks ago my Dr took me off dapsone because my blood numbers started dropping and after 1 week my skin was so bad I can't sleep and it's effecting my life in bad ways.

I am so discouraged that after 6 mo gluten-free my skin EXPLODES when taken off meds. Do I just need to be more patient? Am I being unrealistic? I read stories of people going gluten-free and seeing results in 2 weeks and also folks who take 1-3 yrs. I'd love o hear some other peoples experiances.

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