Could this be Dermatitis herpetiformis please?

[AngieAsh]

Hi. I have recently been diagnosed with subclinical Hypothyroidism (Hashi's) and I know that Gluten intolerance can go together with Hashi's. I have been having a few bouts of bloating, mild cramping and loose bowel movements but no weight loss at all or vomiting and nothing too bad so I'm not sure if I am Gluten intolerant.

Last Tuesday though my knees and elbows started itching like crazy and I went nuts scratching them, I ended up with watery blisters surrounded by hot tight skin that have now turned into red hard scabs and lumps that are still a bit itchy. I thought maybe something had bitten me but today I came across something called Dermatitis herpetiformis while I was looking up things about thyroid and B12 and folate deficiency. It said that it affects people who are gluten intolerant and have auto immune problems and that it is very itchy, causes blisters and occurs around the knees and elbows. I would like to know has anyone on this forum had Dermatitis herpetiformis, does it look anything like this and do I need to mention it to the GP when I go on Friday please? Thanks in advance. Angie.

[Towels]

Hi AngieAsh, I have Dermatitis herpetiformis caused by Coeliac disease, I had a rash on my buttock for a few years that worse and worse. My GP sent me to the Hospital to see a Dermatologist for a biopsy which confirms Dermatitis herpetiformis. I had to have the biopsy while the blisters were out. This condition can be very painful and very itchy. I don't eat Gluten at all but if something slips into some food I get the itchy blisters on my buttock,and feel lousy.

Try asking your GP to see a dermatologist for a biopsy. I hope you can get to the bottom of your condition as I know it can be very frustrating and painful.

Good luck

[AngieAsh in reply to Towels]

Thank you

[Hil101]

Yes, that looks exactly like it and the mad itching is another sign. I have biopsy-confirmed DH and would also urge you to push for a skin biopsy as it is easier not to get fobbed off if you can prove the condition. A blood test for coeliac antibodies would also be a good idea. If it does turn out to be DH, I got mine under control using steroid ointment (quite strong - as well as the GF diet as I'm coeliac) because I did not want to take the medication Dapsone which was urged upon me. A doctor friend of mine was utterly horrified that this med was given for DH because it can have nasty side effects and is a bit of a sledge hammer for a condition like this. Good luck!

[AngieAsh in reply to Hil101]

Thank you. Do GP's usually give Coeliac blood tests without too much fuss? It seems like a good idea to start with that first.

[Hil101 in reply to AngieAsh]

They should be willing to do the test, especially if you have any issues regarding anaemia or low blood ferritin (iron storage) levels which could indicate poor absorption of food due to damaged villi. But GPs can be stunningly ignorant about coeliac and at my GP surgery, some of them don't even know how to test for it. You may also like to bring up that hypothyroidism is often linked with coeliac and type 1 diabetes - a number of my extended family have these conditions. If that fails, I believe you can now buy a DIY coeliac blood test kit! Good luck

[AngieAsh in reply to Hil101]

That's the odd thing, my B12 and folate are both low at the bottom of my range but my iron is only just under mid range at 60.9. Anyway thanks again, I might take a look at the diy coeliac test if I get no luck with the GP.

[dwaage1]

I have DH and have been on Dapsone for almost 3 years (50-75mg) daily. Your pics look similar to some of mine, but mine do not appear so much on the mid arm or leg - more on the butt, knees, hips, elbows and back of my head. It's nasty stuff - I keep hoping I will run into someone who knows of a practitioner who really understands this stuff. It has led to my taking B12, Zinc, Thyroxin and having regular labs to check for damage. No fun. Hope you get to the bottom of your problem.

[Totoro123]

Hi AngieAsh , your pictures are very similar to what I’m experiencing at the moment.

Did you ever get to the bottom of what it is?

I’m wondering if it’s DH related to coeliac.

Dr didn’t seem sure and sent me away asking me to go back if it spreads or changes and I’m definitely getting more of these spots.

Start red itchy and flat, then blister and turn into more of a lump. Seems to eventually stop itching and am then left with a red mark. Quite anxious about it all so any advice would be great. Thanks 🙂