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pmarklesparkle

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Posts posted by pmarklesparkle

  1. I was diagnosed with dermatitis herpetiformis and ultimately celiac disease in September 2024.  I am trying to navigate the world with celiac, unsuccessfully, still having dermatitis herpetiformis outbreaks.  Grocery shopping is difficult, shopping for toiletries is nearly impossible. Dining out is also a challenge. Can anyone recommend iPhone apps that will make these easier?  Thanks so much!

  2. After seeing 2 doctors for a rash on my elbows and forearms, that did NOT get better with steroids or creams, I was directed to a dermatologist.  She took a biopsy from one of the lesions, September 3, 2024.   A week later, the result was dermatitis herpetiformis, positive for celiac. She prescribed Clobetasol Propionate USP, 0.05% cream.  This is the only thing that helped with the rash. The dermatologist then took a second biopsy from an area that was near the rash that was clearing up.  That biopsy came back negative.

    Meanwhile, the dermatologist referred me to a gastroenterologist PA.  The battery of bloodwork was mixed, some showing weak positive for celiac, but my IgA was considered normal.  The PA told me I may have mild Celiac and should just monitor my gluten intake.  I knew she was wrong.  There is NO SUCH THING as mild celiac. So, I saw another practice's gastro NP.  The bloodwork actually looked better, but she ordered an endoscopy biopsy. the only way to get a conclusive diagnosis for celiac.  (In order to get an accurate result for this biopsy, one must be consume gluten for a minimum of 14 days before the endoscopy.)  Finally, I had my celiac disease diagnosis.

    As I continue to navigate a gluten free diet (so far unsuccessfully) now including shampoo, conditioner, toothpaste, lip balm, sunscreen, body lotion, soap, make up etc... my dermatitis herpetiformis pops up.  The Clobetasol Propionate USP, 0.05% cream helps keep things at bay. I hope this helps you!

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