Coeliac and Dermatitis Herpetiformis (intense itching)

[PixieFairySprite]

I posted a few times here last year about the insane, intense itching I could not get the the root of. Well, I got to the root of it and it's caused by gluten and I am Coeliac. I worked this out myself after eliminating gluten. It was clear within 24 hours that this was the cause. I had seen the GP 3 times and a derm. once and they were not interested and didn't even suggest it could be DH. Despite the fact that I also have a thyroid condition (autoimmune conditions tend to cluster).

I am posting for anyone who is experiencing similar symptoms. I remember last year there were several posters who had similar symptoms to me.

I am also wondering if there is anyone else here with Coeliac and DH? I am 6 months into a GF, low iodine, lactose-free diet and still have some incredibly irritating itching.

For anyone who doesn't know, the itch caused by DH is a nerve itch. It feels like ants crawling around the inside of your skin. I became very unwell but am much better now.

Me. It’s how I worked out I couldn’t eat gluten.

depending on age itching could also be peri-menopause.

I take antihistamines daily.

I was diagnosed with DH 25 years ago after having the itchy rash from a very young age and being fobbed off that it was eczema. Eventually I became really ill as it was effecting my immune system so badly. Been on a gluten free diet ever since and the rash only comes back if I get accidentally glutened!
About 5 years ago I became unwell ago with an overactive thyroid and was diagnosed with Graves’ disease but thankfully I’ve been in remission for about 18 months…fingers crossed!!

Thank you so much!

I was diagnosed with Graves disease too at 24 @DaftNoodle . I am 54 now, I had RI treatment and have taken a low dose of Levothyroxine for years to bring my levels up a bit.

It's definitely DH and not menopause @WellOrganisedWoman . 24 hours after eliminating gluten, the itch was 99% better so the link was clear.

I am 6 months GF now and can tell within an hour if I have eaten something containing gluten, oats (incl. GF), too much salt or too much lactose.

I did actually work out today what had been causing the itch of the last few days. The recipe for some scones I had been eating had changed and now have GF oats as an ingredient.

I’m constantly itchy. I’ve had to fight for an iron infusion (ferritin was 6, after infusion it’s 152 and I can finally think straight again). Vitamin D and B12 are low and I think I have symptoms of coeliacs so keep asking but gp wants to watch and see… advised not to give up gluten as it’ll mess up tests (tests I’m not having anyway). I’m considering removing gluten and seeing if I see an improvement. Would a diagnosis actually make a difference to the solution? I’m fed up of being fobbed off. Now they’re suggesting peri menopause but the itching has been for many years, especially at night.

Yes, people suggested menopause to me because it always seems to be menopause these days, but I knew it wasn't.

I noticed within 1 day the itching was so much less intense so I didn't need any test or anyone to tell me what the evidence clearly showed me. I would have refused to eat gluten and again and become unwell again just for a test to maybe (because they aren't always accurate) tell me what I already knew.

I now take every day: iron, folic acid, B vits., magnesium, vegan omega oil and calcium.

I have never seen my nails grow so strong and long.

I have a long history of eczema so I think the GP's just assumed it was that, but it was obvious to me that it was something else.

I actually think that DH is massively under diagnosed and I would urge anyone struggling with itching to try food elimination diets. I have also eliminated lactose and anything high in iodine because they also trigger DH.

If I can do it, anyone can.

I would trial no gluten for a couple of days.

I have coeliac disease and do occasionally get that uncontrollable itching that feels like crawling under my skin. Usually around my ankles weirdly. I suspect it's when I get glutened with cross contamination.