Hi all! Ive been away for a while navigating this new illness and also studying at university. But im back with so more updates and info, thank you all for your help and support.    Update: I suffered with an infection of my dermatitis herpetiformis a month or so ago. This resulted in a trip to a&e with an extremely swollen face, and a 2 week dose of doxycycline. Of course the infection went down but my dermatitis herpetiformis still remains to pop up every now and again. However, I’m coming up to almost a year being gluten free and I can honestly say the outbreaks are less often and more mild. But I’ve been eating extremely strict on a gluten-free diet (not much eating out and very cross contamination aware), so fingers crossed this continues.  As I am UK based, I have finally got through to dermatology and rheumatology in the NHS (no more private appointments which is great!) She was amazing and agreed on what sounds like dermatitis herpetiformis. However, she has also diagnosed me with chronic urticaria (hives) which will explain the swelling of my face, eyes, lips, and even sometimes tongue! So might be an allergy on the case, or perhaps another autoimmune condition due to the undiagnosed coeliac until this year. A skin biopsy has now been arrange for next month which is positive (there’s talks of me eating gluten for a day to activate the rash also, scary but they will have medication on site!)  Currently, I’m feeling more positive about my diagnosis and am so thankful to my hospital for the ongoing support I wasn’t able to get from my GP.  Things are looking up!

Hi there! This is something I’ve often wondered too! I’m still going through the process of getting an official dermatitis herpetiformis diagnosis, however I’ve been battling for 3 years and the dermatologists are pretty certain it’s dermatitis herpetiformis/celiac disease with it’s classic appearance and symptoms (it’s nasty stuff!) About 2 years ago before dermatitis herpetiformis was on the cards, I suffered with a terrible episode of seb dermatitis, it was absolutely everywhere and was probs left undiagnosed for months before I could get in with a dermatologist! I used ketaconazole and it seemed to do the trick. However, knowing what we do now, the dermatitis herpetiformis was definitely aggravating/causing this and I found that it was the use of too many steroid creams (they thought I had eczema) and heavy moisturisers bothering my dermatitis herpetiformis.  Since being gluten free for a year, I haven’t really suffered with an episode of the seb dermatitis for a while. Just trying to navigate the dermatitis herpetiformis outbreaks now.  But definitely feel there could be a correlation! 

I have had very mild rosacea on my cheeks for years. I also am celiac abd have recently been diagnosed with rosacea in one eye. I have been prescribed eye drops during the day and a gel at night. 

Although diagnosed with celiac and dermatitis herpetiformis, I was curious about the celiac genetics and had that testing done on my own. Unfortunately, the lab does not explain the results and any doctor I have asked said I would need to see someone specializing in genetics. I was hoping someone out there might help me understand. Here is what came back and although I understand the HLA DQ2 and HLA DQ8, I wasn't sure what the variants mean and why they repeat twice. Someone said it was a double marker meaning both of my parents gave me copies. I also read having this combination makes my celiac potentially much worse. HLA DQ2 - Positive | HLA DQ8 - Negative HLA Variants Detected: HLA DQA1*05 and again HLA DQA1*05 HLA DQB1*0201 and again HLA DQB1*0201

Understanding that normal is <15, I started off with 250+, then using the same lab it took two years to get to 11, the last test was 3. So, it jumped back up for some reason which is why I suspected gluten in my diet somewhere. I do not do dairy, eggs, oats, or soy. I am vegan and gluten free, and take numerous supplements with the help of this forum.