Hello all, I am super frustrated with my diagnosis journey over the last 15 years... a new city, a new diagnosis. Can you tell me if this looks right to you? For the last 15 years i was told I had severe eczema, that could not be controlled properly but by high potency corticosteriods, topical immunomodulators and sedative antihistamines. Now I am told it's not eczema, it's Dermatitis Herpetiformis. Blistering rash, rarely gone more than a few weeks if at all, symmetrical (elbows, knees, feet, hands, underarms, hips, stomach, buttocks), severe itch.
I am on Dapsone 25 mg 2x daily and now completely clear. Diagnosed Dermatitis Herpetiformis (Dermotologist). Blood tests done, then told to go GFD (Primary Care Doctor). Asymptomatic gastrologically, endoscopy done, told I don't have Celiac (Gastroenterologist). But if I have DH I have celiac disease right? Why can't all these doctors agree? Anyone's spots look similar?
Initial skin biopsy (punch): eczema negative, puritic vesicle observed
Immunoflorescence IgA skin biopsy (punch): Weak Postive
Blood Serum Celiac Comprehensive Panel (Quest Diagnositics - Ttg, EMA & EMA Titers): Positive
Small Intestine biopsy (EGD): negative
Thoughts?
(pictures from Oct 2012 - prior to biopsies, tests & Dapsone use)
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I am on Dapsone 25 mg 2x daily and now completely clear. Diagnosed Dermatitis Herpetiformis (Dermotologist). Blood tests done, then told to go GFD (Primary Care Doctor). Asymptomatic gastrologically, endoscopy done, told I don't have Celiac (Gastroenterologist). But if I have DH I have celiac disease right? Why can't all these doctors agree? Anyone's spots look similar?
Initial skin biopsy (punch): eczema negative, puritic vesicle observed
Immunoflorescence IgA skin biopsy (punch): Weak Postive
Blood Serum Celiac Comprehensive Panel (Quest Diagnositics - Ttg, EMA & EMA Titers): Positive
Small Intestine biopsy (EGD): negative
Thoughts?
(pictures from Oct 2012 - prior to biopsies, tests & Dapsone use)









