Does anyone suffer from dermatitis herpetiformis?

[Rash54]

If so, does this rash look similar?

We have a 3rd dermatology appointment coming up. First diagnosed as DH (private appointment so couldn’t get official diagnoses) and second diagnosed as pompholyx (NHS appointment). We have requested a 3rd opinion.

All coeliac blood tests so far have been negative.

Anyone?

Not much help but I have similar on my leg and awaiting blood test for coeliacs. It’s bloody itchy and driving me mad. Was it just a blood test you had? Could it be a false negative? It might worth avoiding gluten for couple of months to see if any improvement?

Yes 2 negative blood tests.

I don’t want to cut out gluten yet incase the dermatologist wants to do a skin biopsy as you need gluten in your system.

hope you get some answers soon!

Is it just on his hands? Because pomphoylx itches like crazy and looks exactly like his photo.

Hands, elbows and bottom of calves

I have dermatitis herpetiformis and was diagnosed in 2019. I actually ended up diagnosing myself after doing a lot of research, because no one seemed to know what the rash was. It was so intensely itchy it was driving me crazy. It started along my hairline and then spread to my knees, shins, back, and arms.
I eventually went to a private dermatologist because I was so uncomfortable, but even they didn’t recognise it and thought it wasn’t DH. I pushed for coeliac blood tests anyway, and they came back positive. I then had an endoscopy, which also confirmed coeliac disease.
I was put on Dapsone and went gluten-free immediately. It took around two years for the rash to fully disappear, but now I rarely get flare-ups and I no longer take Dapsone. I never had any of the “typical” coeliac symptoms, but the endoscopy showed clear gut damage.

I had Pomphylox on my hands and feet a few years before having DH.

@SicilySue well done you for pushing for an answer! Glad you got a diagnoses in the end. Your photo looks very similar to my little ones rash. Hope the dermatologist we see soon is able to diagnose something. Did the pompholyx look similar to the DH?

The Pomphylox was very itchy like DH but I think it was more obvious blisters that were bigger and would burst and then dry up. The DH was smaller bumps.
I hope you find out what is causing your little one’s rash soon 🤞

@SicilySue thanks! I will update the thread incase someone searches for it down the road and wants to know.