Gawd, you guys. I hope I haven’t run into any of you in the past few weeks because you probably ran the other way. You see, I’ve been struggling with some crap on my face (not literal, but maybe that would be better since it could be washed away) since early this summer, but it just got so much worse that I was convinced I had leprosy.
While one who has celiac disease, and a family history of autoimmune diseases, should always assume that autoimmune is the culprit, my GP saw me and was like, “Ahhhh! Infantigo!!!” Or at least that’s what I thought I heard.
So after being treated with horrible antibiotics that made me writhe in pain for the infantigo, and that not helping (and having her repeatedly ask me if I pick my nose, which quite frankly, is none of her business), and then getting some kind of topical steroid that actually made it worse, I’ve discovered another super fun autoimmune response that I’ve never had before! It’s called perioral dermatitis and it’s living on my face.
My dermatologist, who also specializes in autoimmune diseases, called it out and now I’m on a 6 week regimen of anti-inflammatory antibiotics that could also make me writhe in pain if I don’t take them at the exact right time. So that’s going to make for a fun holiday season. I’ve also ditched my beloved Chap-Stick, as I read petroleum can sometimes cause this fun reaction. Not taking any chances, there.
But the real bitch of the situation is that I have to go about my life as if I look totally normal because, as all of us with celiac or other AI problems know; you may be shitting your pants and scaring the children, but you still have to have to show up at work/parent-teacher conferences/that cool networking event where you know everyone will stare at your face and wonder if you’re contagious. I’m also very excited to be living in a new, more social, neighborhood in LA where I can walk and talk to the people all the time. WHILE I HAVE A GIANT RASH OVER MY FACE.
I’m tempted to just tell everyone I have herpes.
My dermatologist did tell me that this will get worse before it gets better, so I do hope I’m in the “worse” phase right now. Because, you guys, it’s really ‘effing bad. And painful. And makeup is not helping, and most likely hurting.
But, yeah, here’s the lesson for all of you who may have a weird skin flare up around your mouth and nose: Don’t use steroid creams. That will make it even worse, to the point where you will wish that the other symptom of perioral dermatitis was a broken leg, so you’d have a good excuse to never leave the house. In fact, I’m advocating for that new symptom, and if the autoimmune gods had any kind of heart (which I know they do not, ‘cuz, autoimmune) they would abide.
See you in six weeks.
Yuck, but very interesting to read – I had that in 1975 (age 12) but was only diagnosed celiac in 2015. So many of my ailment mysteries are now being solved!
Right? It all starts to make sense through an autoimmune lens. Sadly.
Ugh, that sounds painful. I hope it clears up soon. I was just thinking of you the other day. Specifically your post about moving. I was not planning on moving yet, not for at least a year or two, but the right house came on the market and when I went to look at it, I saw wheat products in every cupboard. More scrubbing in my future!
OMG YES!!!! I have had that!!! I didn’t get a diagnosis for years, even after that. I’ve only had it happen twice and I have no idea what the trigger is for this eruption. I feel for you!!!!!!! UGH!
I wish I knew the trigger as well. The only thing I can figure out is that I switched to a new moisturizer that had petroleum in it. DUMB. But, really? That’s all it took? UGH.
I was challenged with a rash on my face for 3 years, around nose and lips. It tested positive as staph infection. I used a topical anti-biotic and was recommended to follow a very strict anti-inflammation diet to starve the infection to death. I enjoyed the imagery because it was so awful, but unlike you, I had no pain. Anyway, I learned a ton and feel great following this food lifestyle now and my autoimmune issues are manageable when I stick to the diet, not so much when I “cheat”. Visit KnowTheCause.com to read about Phase I and Phase II of this “diet”. (I personally live with Hashimoto’s thyroiditis). Good luck to you. Hope it clears quickly. No Fun!
My bloodtest came back negative for Celiac, but I had so many Celiac-only dermal issues that I’m officially Unofficial Celiac. I’ve never had a rash on my face, but I’ve gotten dermatitis herpitiformis since I was little. We had always chalked up my skin issues as an allergy to something – not an auto-immune disease.
I’m so sorry that you’re dealing with this – it CANNOT be fun!
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Weird thing. I’m going through this right now. 3 days into antibiotics and my face is so crazy right now. I JUST got my celiacs diagnosis after a neg blood test with high imunogloben count, normal endoscopy and then a positive biopsy (yay!). It was so hard to find. As SOON as I started my gluten free Celiacs positive diet, this face thing happened. My dermatologist said it was NOT related but probably because of the mask wearing in humidity (which happened around the same time as the start of the diet change. I’m now trying to find a celiac specialist to help me as I’m so worried the antibiotics will not work. My face is and looks like it is on fire. Any suggestions to try and calm this mess would be helpful. I live in Philly area so also if anyone knows any specialists, that would be helpful too.
I don’t know the solution, but I do know my skin started going crazy when I started getting sick, and it did not clear up after my diagnosis and removing gluten from my diet. I’m just getting it under control 10 years later (I think my dermatologists made some missteps) with prescriptions and ointments. Go see a doctor and good luck!!!