Hi - I'm pretty new here and am wondering if anyone has had a similar experience. I'm 42, female. Got a rash ("dots" as I call them) in June 2014. Spread on my legs, bum, back, arms - SUPER CRAZY itchy and extremely symmetrical. First dermatologist did a skin biopsy which indicated drug reaction. As I wasn't on any new meds recently, he decided it was insect bites and told me to buy RAID! (wrote RAID on a prescription pad!!). Next derm took two more skin biopsies; came back as insect bites. He had considered DH but decided not based on biopsies. I went back to my rheumatologist (also have psoriatic arthritis for many years) who did blood work. GP noticed some odd results, ordered more blood tests. Referred to an allergist/immunologist - no allergies other than seasonal - but he was the first to verbalize DH to me - he was certain. GP ordered more tests and it turns out I'm IgA deficient. She sends me to a 3rd derm who orders celiac profile at hospital which includes IgG Transglutaminase test which is over the roof (>250 with ref range >15 abnormal). My IgA Transglutaminase test is normal of course. This gets me sent to 4th derm in a hospital who does a 4th (!!) skin biopsy: drug rxn or insect bites!! At this point, GP refers me to GI doctor (btw I have ZERO gastro issues, no problems at all) who does a gastroscopy and diagnoses me with celiac! Shocking to me. As a result, Derm agrees I must have DH. 7 months passed until I finally got a diagnosis - much of it spent on Prednisone - getting fat and feeling awful. So then I go strictly Gluten Free. Now: 3.5 months later, bloodwork redone and my IgG Transglutaminase test comes back at 32. Much lower - but my skin is still erupting and itchy and most dots just never go away. Somewhere along the way GP gave me Dapsone btw and I had a major rash all over from it - so I can't take it. Have since spent 6-8 weeks on many drugs, cycling through them trying to find one to help. The only thing that helps so far is Clobex spray. I am now on Sulfasalazine - giving me headaches but I'm trying to stay on as I read the headaches sometimes go away as you get used to it and I'm desperate for something to work.
So my questions:
1. Being gluten-free with no results for so long is really difficult - I know I have read it can take 1-2 years - did anyone get better faster?
2. Is there anyone out there who is IgA deficient and was NEGATIVE for DH in skin biopsy but can confirm they do have celiac and got better on a gluten-free diet?
3. Is there anyone out there who is IgA deficient and was POSITIVE for DH in skin biopsy? Can this even happen? My derm just isn't sure and I can't find any studies referencing IgA deficiency and skin biopsies for DH....(but I'm not medical so I don't have access to a lot...if anyone else does?)
Thank you for reading this long post