Dermatitis herpetiformis

[penelope2]

I accidentally ate a small amount of wheat last weekend and have had several side effects.

Firstly my balance, coordination, fatigue and speech was much worse. I have gluten ataxia (self diagnosed) digestive issues and the dermatitis on my feet flared up too. It is really itching and burning. Again this is what I think I have.

Have had this rash, sometimes much worse than others for nearly 2 years now, but it has kept me awake at night with the discomfort. Thankfully I have an appointment on Monday and hope to be referred to a dermatologist.

I think these rashes usually appear on the elbows or knees but my feet suffer and at the moment are in a right state. It is uncomfortable to put any sort of shoes on. Does anyone else have something similar?

[Hidden]

Hi penelope2 I think you're doing the right thing seeing a Dr for a referral there test for DH is very straightforward and here's a link to the NHS about this:

nhs.uk/conditions/contact-d...

Being a diagnosed coeliac a tiny amount of wheat would knock the stuffing out of me so good luck on Monday.

[penelope2 in reply to Hidden]

Thanks Jerry

[Narwhal10]

Hi Penelope2,

I am really sorry that you are suffering. I do hope you find some relief with ointments, creams. Good luck for your appointment. I would advise taking photos and videos (especially for the ataxia). It’s so unfair that wheat/gluten is so prevalent.

I haven’t had DH but eczema and one year, the skin on my chest, abdomen, thighs blistered twice. (Glands up, felt like I had the flu as well - couldn’t dress or put duvet on me and it was mid winter). Also saw a neurologist that year as couldn’t walk in a straight line but for that 10 minutes was ok. For me it’s deficiencies. I believe in self-diagnosis, we self report our symptoms to a doctor, but it depends on their listening skills and interpretation.

Professor Bardhan of BRET Institute thebret.org

says

‘In every patient, if you listen there is a PhD.’

which is why I put everything in writing.

All the best

🐳

[Fatima66]

I have dermatitis herpetiformis as well. The consultant told me that the rash appears on the upper body not the legs. I get other rashes from certain toiletries ingredients. I think it's because we have that weakness we are more prone to allergies.

[penelope2 in reply to Fatima66]

Hi Fatigue. Yes I too thought this but read again research and what the Coealic UK website says and it can appear on other parts of the body too, but it always appears on both sides. Saw a GP yesterday who has seen DH before and he is referring me to a dermatologist, the waiting list is over 12 months so I won't be holding my breath on that one! I have peripheral neuropathy too so could be the nerves in my feet have played a part in this too.Seems like we have to consider everything as the doctors find it hard to think outside the box and stick to textbook stuff.

I am really careful about toiletries etc too.

Have you thought about systemic inflammation and what can be causing it?

It's a minefield out there and I've only scratched the surface but trying to see the bigger picture!

Best wishes

[Fatima66 in reply to penelope2]

Thanks for the information. 😊

[stillaboveground in reply to Fatima66]

Hi Fatima66, I have had DH a long time also my son gets it, I have had it all over at one time and another. I was told by one doctor I couldn't have DH because it is very rare, but that was years ago and it's not as rare as he thought it was. I hope you get some relief from the terrible itching. Take care. Ruth

[Fatima66 in reply to stillaboveground]

Thanks