Anyone with DH able to answer some questions for me please.

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I am diagnosed Ncgi from a negative coeliac blood test food diary elimination diet then trial of re introduction.

I initially attended the gp over 2 years ago with symmetrical rash which didn't respond to any treatments, some small blisters and stinging, tingling and an insanely itchiness often without any rash or signs.

After going gluten free it took a few months to go but eventually did. The itch rash was legs arms scalp under arms and feet. I also had the usual but problems constipation, diarrhoea gas bloating cramps etc.

The first doctor i saw said it was ibs and eczema and to get on with it.

The second doctor diagnosed Ncgi.

Over the past couple of months I have accidentally eaten gluten containing food twice and all those symptoms are back.

Before my first doctors visit I googled symmetrical rashes and dh fitted what I had I know doctors hate you to do that but as a nurse I had never seen anything like it.

I have a gp appointment next week as I really want to know what it is, as I have never had any other testing then a blood test for coeliac.

Can you have dh with a negative blood test?

Do you find your rash worse at night or in a bath?

Am I right in asking in for further testing?

Thank you in anticipation and sorry for the long post

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  • Posted

    Hi.. My father in law has DH (he had the rash but not diarrhea) .. and my husband is Coeliac..(no rash). To have the test for DH you need a referral from your doctor to a Dermatologist. I am not sure though if you need to still be eating gluten as you do before testing for CD (At least 4 serves a day - equivalent to 4 slices of bread - for 6 weeks. A blood test is not reliable... Sometimes people get false negatives. You do need to have a gastroscopy / biopsy (for CD testing) .    If it is DH you can be treated with Dapsone tablets and you will need to be on a gluten free diet. All the best.
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    • Posted

      Hi Marg04364 thank you for your reply, yes I wonder if I will need to be eating gluten for a test.

      Anyway I had my appointment with my GP yesterday we discussed my rash and the itching she has for now commenced me on fexofenadine an antihistamine to see if this helps with the itch. She admitted knowing nothing about DH and is going to read around the subject and get back to me.

      She did say that my immune system is reacting more strongly to smaller amounts of gluten now and is very likely to take longer to calm down again.

      I await a call from her re DH and further testing

      thank you again

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    • Posted

      Ok  I'm sorry she didn't give you a referral right away to a Dermatologist. They take a small skin biopsy to test for DH.  If it is DH you wont have to have a gastroscopy.. you will know you need to be gluten free.

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  • Posted

    Well just an update, a couple of weeks after my appointment I received a referral to dermatology, I now have an appointment on Monday, it cant come soon enough, I am itching like a dog with fleas, but im sure they are likely to tell me to go and eat gluten for 6 weeks first, I only hope that I can have something for the itch in the meantime.

    I will update as able

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