I have been reading this forum constantly over the past couple of months and trying to figure this peeling lips thing out. A few months ago, my health took a turn for the worst and peeling lips was/is one of my symptoms. It is definitely exfoliative cheilitis. I am positive of that. But, that being said, things have taken a surprising turn for the better and I think that I can provide some major contribution to this forum and the condition in general.
So, first I will start with my story. It is pretty long and I could go on forever, but I'll try to include the most important stuff. Like I said, a little over 3 months ago, everything went bad. First, I got this weird red spot near my lower lip. My lips were also chapped and felt weird and I freaked out. Ironically, looking back on it, I was such a m*o*o*n. I made a huge deal out of it, started loading on chapstick/vaseline, and went to the doctors thinking I had herpes or something and that this was a massive problem. It was nothing compared to what was coming.
The doctor made the next m*o*o*n move, and prescribed me antibiotics for this minor nuisance. He gave me doxycycline, an oral antibiotic. I took it every day for about a week on an empty stomach as I was instructed. Around that time, the real symptoms started. I started becoming bloated as hell when I ate. I started getting constipated/going to the bathroom infrequently and having terrible stomach growling. Every morning, I was woken up with severe dry mouth, but only after I slept. Everything was baffling and this all happened a little bit after the antibiotics. I told my doctor hey dude that did not work, so he gave me some antiviral and I took like 4 huge pills in one day. I also put steroid cream on my lips, which he told me to do. Really wish I didn't take all that stuff.
Next, things kept getting worse. One time after a hot shower, I noticed a white film on my lips that was not normal. I think the white film came before the peeling, not sure. My lips were very chapped/dry/different and I remember peeling them off and it was brutal. Something I'd never done before.
The full on cycle developed along with the worsening of my digestion and the continuation of other weird stuff like the dry mouth in the morning. My lips peeled off every couple of days, turned white and disgusting with water, maybe kinda yellow sometimes. My tongue was always white, worse in the morning. A lot of you guys know how it is. Over my winter break (I am a college student), things were awful. Other weird symptoms presented themselves like insatiable hunger and anxiety/depression which both could have been 100% psychological but I will include them. Over break, I was a total recluse. I was skipping out on parties, staying in my house reading books and trying to figure this out, which sucked because I am usually really social. Things got really bad, and finally I tried montreal's diet/a candida diet combination. I had nothing but coconut oil, eggs, rice, veggies, chicken, salmon, some nuts, and low sugar fruits. Things got way better, but my lips were still peeling after 2 weeks. And that diet blows. I lost like 10 pounds which I didn't want to lose and it was unrealistic to stick with. Not to disrespect montreal homegrown, because he figured out a lot of great stuff and worked hard to help everyone and he's awesome and deserves normal lips. Jesus this is annoying to type all out haha.
Anyways, on to the promising part!! Under the instruction of my parents, I went to see their doctor. They promised he was a good doctor who listens, and they were right. I told him all my symptoms, digestive and lips and dry mouth being the biggest, and he listened. I told him I thought fungus was involved. He gave me a blood test and gave me antifungals (3 diflucan pills, nystatin ointment, nystatin mouthwash to swallow). I was reluctant to take it, but I figured screw it, it can't get too much worse.
I went back to school and started the antifungals. Soon after starting them, I saw improvement. The white film went away after showering and things seemed a lot better. I thought that maybe I had found the answer, but it seemed too good to be true. It was. My lips continuted peeling, but it was a lot better. The white crap was gone and the peeling was colorless, just skin. I think this shows that the white stuff that comes on the lips is related to fungus. But, I think mostly everyone has fungus covering their body/insides. I think when there's color to the peeling it is fungus or bacteria presenting itself on the dead skin sitting on our lips which would otherwise not really due anything. Or maybe a lot of us are messed up somehow and can't ward off yeast/bacteria. Maybe not, everyone's different, I don't really know, on with the story.
So I was like damnit, the struggle continues. But then, something life changing happened. I got a voicemail from my doctor while I was in class. He called and told me my blood test indicated antibodies which showed celiac disease and my genetics supported this. I was pretty shocked to say the least. It didn't make sense, never had an allergy or anything in my entire life. Never had a problem with wheat, used to drink over 10 beers a night with friends and be fine. But, looking at the symptoms, it actually made perfect sense. Bloating, constipation (some celiacs have this rather than the other), mood stuff, weight loss, all kinds of symptoms. I even found people on the celiac forum if you google celiac lips peeling with lip skin overgrowth problems.
So you probably think I'm gonna say that I went gluten free and everything got a thousand times better. Well kinda, but no, this story continues to confuse. I guess it takes a while for small intestines to heal and absorb nutrients again. Anyways so yeah I went gluten free, and things still sucked but they got better slowly. But at the same time a lot of symptoms were still there which weren't fully improving and some stuff even got worse. I was frustrated. But I stuck with it. Improvements happened slowly, and I believe I do have celiac disease and it is causing many problems. But also, about a week ago, and this is where I think maybe another major breakthrough comes in, I changed my toothpaste. I had done this before to sodium lauryl sulfate free for a few days, I'm not stupid, but when it didn't get better right away I dismissed it. This time I went to an all natural sls free AND fluoride free toothpaste, along with some natural shampoos and stopped using soap (sounds dirty but I just use water whatever).
After like 5 days, which is like 2 days ago, the dry mouth waking me up in the morning stopped!! I was ecstatic. I even got black-out drunk two nights ago and no dry mouth in the morning, which is crazy. I've also had normal bowel movements for the first time in months lately, which I think is the gluten free fully kicking in. I feel pretty great too. And for what you guys really care about, my lips, they seem so much better. I can see healing parts. But, I am still not cured. I just think that I am on my way and see a light at the end of the tunnel.
So here is what I am going to do now.. went to a GI doctor a few days ago, and he wants me to go back on gluten (crap) so that he can do a small intestine biopsy in a month and see if I really have celiac. He said I could always be lactose intolerant and had a false positive or something also could be going on like bad bacterial overgrowth, which I suspected on my quest for good health. I have mixed feelings about going back to gluten, but I'll do it with the future in mind. It's convenient since I'm going to Spain tomorrow for spring break :). After eating gluten containing crackers yesterday, my stomach got huge. I had pasta too, I'm bloated as hell. But, I've also had milk and eaten whatever I want, so who knows. Still no dry mouth though. The plan starting today is to sacrifice myself for a bit and eat gluten even if I feel crappy, but not eat dairy like the doctor said and get the biopsy in a month. Also I'm ovbviously sticking with this toothpaste and new safe shampoos. I will post again after all of this is done and see what happens.
I don't know what is going to happen. Maybe I won't be cured, although things are looking up. I don't know a ton of things and I wish I did. What caused this? Celiac from the beginning? Virus triggering celiac or allergies? Stress triggering stuff? Antibiotics screwing me up? Candida the cause for everyone? I mean really is anyone ever gonna pursue this candida thing in detail and look into it? It's all over these natural websites with no evidence/research and nowhere to be found in Western medicine. Wtf? Some will say this happened cause I used balms and peeled my lips. This could be true, but I don't think so because my lips got dry and chapped and in the middle of fall in Miami, what's up with that? and why do I have all this other stuff going on simultaneously? By the way these intermittent are all rhetorical questions, please don't try to answer because no one knows the answer yet with this condition.
No matter what, I think a lot can be taken from my story. Take from it what you want. I think everyone should reconsider being allergic to things, because allergies can be triggered at any point in life by various things. I would never suspect I was allergic to anything but it's pretty clear that I am. Maybe consider celiac disease and getting tested seeing as 95% of people with celiac disease don't even know they have it. Many have know gastrointestinal symptoms. I never would have guessed. Maybe consider taking simple antimicrobial measures like washing your mouth with salt water or coconut oil or something like that. Definitely consider cutting down on refined sugar and chemicals and crap, cause they're unhealthy anyways so it can't hurt. Or just use a lip balm and live your life, whatever. I know everyone is different, like the people who got it from accutane or just bit their lips. But I think we are all in a similar situation, and this could help everyone. Sometimes I think our lips peel just cause of lip inflammation and the lip skin can't cover it all so it peels. Maybe that's really dumb, maybe that's obvious, I don't know. Oh and probably don't peel your lips off either just trim them or exfoliate gently or something, I think that one is obvious. No matter what, I promise to write back after more experimenting and say how things have gone, even if it's depressing and saying that things are back to normal. That's my really long story and thoughts, tried to include everything. Good luck to you all!
Oh also, for the people who say this is such a terrible condition and compare it to cancer or things like that. Are you freaking kidding me?? Come on. Maybe watch that thing on sportscenter of the guy born with no arms or legs who climbed mount kilimanjaro. Everyone needs to be more like that guy. Ok that's, all good luck.