But what is this?
Posted , 3 users are following.
Hello to this forum group I have just found. I have just been diagnosed coeliac at the age of 46, 4.5 weeks back. How do you know if you have this condition on top of coeliac disease, which was a definite diagnosis. I have extremely itchy tickly skin persistently that is driving me round the twist and I can not decide if it is this condition or part of the perimenopause. How do you tell what this is ? Does any one on here have burning shins, since they cut out all gluten or is this something entirely different and separate? Many thanks Sam
0 likes, 4 replies
tm62 sam18386
Posted
Hi are you aware of a skin condition called Dermatitis Herpetiformis, it is caused by gluten. I had it for years before diagnosis, at first it was on my elbows and my knees but then I also had it on my back. It is extremely itchy and has watery blisters. Try googling it for more information.
I did think that once I had a diagnosis of coeliac and gave up gluten the rash would go but it took several years of eating a strict gluten free diet to be free of it. Whilst I still had the rash I was prescribed a medication called Dapsone which helped me a lot, I only took a small dose when I had a flare up. You could ask your specialist/ doctor if you could try dapsone to see if it helps. I was told that if the rash i had was DH then the Dapsone would help and i found it did. Although its not a medication they give out freely as you need to have blood tests whilst you are on it .
In regards to your burning shins, sorry I dont know about this, however i now know that people react to gluten in many different ways. If you are newly diagnosed watch out for additives made from wheat such as maltodextrin, dextrose etc which are deemed by CUK to be safe but many people cannot tolerate. Also one of the main bread manufacturers Juvela have gluten free wheat starch in their products and I dont thing that suits me.
Hope this helps, you might want to ask to see a dermatologist who may be able to tell you exactly what is wrong, I wish I had done when I first got the rash, it took about 25 years before I got a diagnosis
sam18386 tm62
Posted
hi tm, omg the more i hear the worse it gets! i can't remember any blisters. i am seeing my doctor maybe this week to do with my skin. it's so sore. i will ask to see other people about other parts of my treatment, i'll let you know how i get on.
tm62 sam18386
Posted
Yes please let me know how you get on, the classic DH rash has water filled blisters, but if you dont have these that doesnt mean to say that your rash isnt to do with having CD. We all react differently, that said it could be something else so if the GP isnt sure ask to be sent to a specialist.
When my GP found out that I had DH he advised that he had never seen it before and he wasnt far off retiring. I had been going to the surgery ( not necessarily seeing that Dr) for years and being given Betnovate ointment, which didnt help the rash.
When I saw a dermatologist he advised he saw the DH rash on a regular basis and confirmed what I had, I was then give Dapsone which I didnt want to take all of the time, just when it got really bad and I couldnt get to sleep.
Hope you feel better soon, if your rash is anything like mine used to be I know how awful it can be, when it was on my back it felt as though it was coming from inside me rather than on the skin surface and was hot and itchy.
marg04364 sam18386
Posted
Wonder how you got on with your rash. You would need a referral to a dermatologist for a small skin biopsy to check if Dermatitis Herpetiformis which is related to Coeliac Disease..