Thank you!  I will try this.

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!

Welcome to the forum, @pmarklesparkle! Thanks for sharing your diagnostic journey as it may be helpful to others who are getting mixed results during the diagnostic phase. Kudos to the gastro NP who dug deeper and ordered the endoscopy/biopsy. You may also wish to investigate a low iodine diet to get a handle on your continued outbreaks of dermatitis herpetiformis.

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!

Although the gluten challenge guidelines suggest at least two weeks of at least 10g of gluten daily, I would go for 4 weeks to make sure - if you can tolerate it, that is. When you go in for the blood draw, make sure to ask your physician to order not only the tTG-IGA test but the total IGA test. The tTG-IGA test result cannot be trusted if you are IGA deficient. The total IGA test checks for IGA deficiency. Many physicians will order only the tTG-IGA. So, at the minimum, the doc should order the tTG-IGA and the total IGA. There are other celiac antibody tests that can also be ordered for a more comprehensive panel, especially in the case of IGA deficiency.  Here is an overview of celiac disease antibody testing: