Awful Facial Rash

[missy--m]

Twice in the last few months I've had a horrible, horrible skin rash. My doctor is convinced it is Herpes Simplex (cold sores) but that sounds crazy to me, it's all over my face, my earlobe, my forehead, and I have an itchy scalp. I submitted a blood test but am waiting for results. But I doubt she's testing for anything else and even if I have the virus that doesn't mean that's what this is on my face as she took no swab or biopsy.

I told her I'd taken Aleve (NSAID) the day this rash came back, and recently I read that could indicate celiac disease/gluten intolerance). She said people rarely react to Aleve. Hmm. I also have had bloating and irregular periods recently and I've just read that could also be related.

But the rash on my face didn't look exactly like celiac-related dermatitis. I've cut out gluten as an experiment, but has anyone else had a similar rash? It starts out bright pink and feels very hot, then swells up, and eventually blisters form in some places. It burns and stings more than itches. My scalp itches too but not severely. The first time I got it cortisone cream worked well, this time the doctor told me not to use it (as she's already assuming it's cold sores). When the rash recurred, it was in exactly, exactly the same patterns and places.

I'd really appreciate it if anyone else here can tell me if they have had a similar recurring rash?

[Alwayssomething]

Yes, only mine started on my body, each time it came back it spread a little further. Then I noticed that my face was on fire everytime this rash appeared, ears (inside and out) scalp and even my eye lids. It took 12 weeks for a diagnosis and it took almost a month for the rash to clear 100%, now if I get any gluten my face (in the exact same spots on the sides of my cheek/chin) behind my ears and all over my neck break out immediately, sometimes they blister sometimes not, mine itches like crazy. I did have to change my makeup, face soap, shampoo, and soap as well as my diet.

A dr did just suggest I go back on gluten to be tested for celiac that way I had an official "diagnosis" I told him no thanks, there is no way I would eat gluten again for 10-12 weeks and endure this rash, my immediate rash upon being glutened is enough of a diagnosis for me.

I did learn that this rash with the celiac is often associated with a thyroid condition called hoshimoto's, I tested positive for that as well.

[squirmingitch]

Missy,

Read this thread all the way through. it will tell you much about the differing dh experiences we have & the way dh presents for different people.

https://www.celiac.com/forums/topic/91270-symmtery-in-dh/

And Always...., Yeh! I hear you! No way, no how I'm going back on gluten to get an official diagnosis. As far as I'm concerned I DO have an official diagnosis.

[dani nero]

You need another doctor. I swear these doctors need to be re-schooled

[ravenwoodglass]

Can you find a dermatologist who is familiar with DH? The doctor can biopsy intact skin next to the lesions to look for the antibodies. The doctor has to tell the lab he suspects DH as they need to be testing for it to find it. A diagnosis of DH is a diagnosis of celiac and no other testing would be needed. There is a reason it is called dermatitis herpeformis as the lesions do look like herpes lesions. You need a doctor who doesn't just diagnose on appearance alone.

[missy--m]

Thank you all! I read the other thread and it's good to know that not all DH symptoms are the same.

Well my test for herpes came back negative. In fact I am very healthy apart from a severe Vitamin D deficiency, which I have heard can also be a symptom of gluten intolerance/celiac! But of course my doctor didn't test for gluten antibodies and she actually said to me "it's not celiac" and I said "how do you know if you didn't even test for it?". So frustrating.

So today I went to a dermatologist but weirdly she didn't want to do a biopsy. Now I'm keeping a food diary, but I've cut out gluten anyway to see if that helps...... maybe I'm just going to have to diagnose myself. I really don't know why doctors are so against even considering gluten as a culprit, it makes so much sense to me.

[missy--m]

Can you find a dermatologist who is familiar with DH? The doctor can biopsy intact skin next to the lesions to look for the antibodies. The doctor has to tell the lab he suspects DH as they need to be testing for it to find it. A diagnosis of DH is a diagnosis of celiac and no other testing would be needed. There is a reason it is called dermatitis herpeformis as the lesions do look like herpes lesions. You need a doctor who doesn't just diagnose on appearance alone.

Hm, maybe then it's worth continuing to eat gluten and if the rash comes back then demanding a biopsy immediately.....ugh, not sure I can go through it again!

[mushroom]

Doctors are taught very little about celiac disease in medical school and it is never something they first think of - in fact they seldom think of it at all And that goes for dermatologists too! It shouldn't be so hard to get the keys to unlock the door, but it is. A derm. biopsy of an active lesion would definitely be the best way to go if you could find a dermatologist willing to do it. And it has to be taken adjacent to an active lesion, not on the lesion itself. And they have to specify it's a dermatitis herpetiformis biopsy because it requires special staining to diagnose it.

[pricklypear1971]

Ridiculous.

If you find a doctor to test you, wait a while. Steroids can negate Celiac testing by suppressing the immune system.

I wonder if that's why DH is hard to dx, because they toss steroids out like candy first.

You may read some of the recent threads in the DH area about ways to combat rashes.