Lip Inflammation, Constant Peeling And Redness

[scorpio]

I have been suffering with constant lip peeling for a year and a half now. At times my lips are very red, sore, blistered and inflamed. The peeling happens in a cycle - it takes 5-6 days to peel off where the skin gets hard and crusty and eventually peels off then the skin is raw again. The skin when in contact with water goes white. This has made my life very distressing. This lip problem arose at the same time as my severe constipation, after 6-8 months of suffering I was diagnosed with Celiac Disease. Initially my IGA levels were above 250 (Tissue Transglutaminase) and my IGG levels were 176 (Deamidated Gliadin). After 6 months on the gluten free diet my IGA levels have dropped to 12 and my IGG levels have dropped to 61. These should be (for a normal person) under 15. Unfortunately, my lips still peel constantly which is non-stop.

 

My GP thinks the lip peeling is a result of celiac disease but is still baffled as to why it has not improved on the gluten free diet. I have to say there has been slight improvement in the blistering as well as the inflamed/puffy lips after starting the gluten free diet, though the peeling is still constant. Before starting the gluten free diet I also had cracks at the corners of my mouth, which have resolved after starting the diet. I have been to a dermatologist for this lip peeling issue who gave me a cream (elidel) to apply, which hasn't helped even a bit. I have also tried increasing my vitamin intake - I added a tablet which has iron, vitamin B complex, and zinc mixed together. Unfortunately this has also not helped.

 

I have no idea what else to do about this issue! It is very painful and I do really want to get rid of it. Any assistance/advice would be highly appreciated. Sorry for the long post and thank you in advance

Edited April 2, 2015 by scorpio

[kareng]

What does your dentist say about it? He or she might have some thoughts.

[mamaw]

Have  you  checked  your lipstick?  Medications? not  necessarily a gluten  issue  but  another  ingredient .... Ie:  sulphites, soy, sodium  lauryl  sulfite(sls) , binders ,facial  washes  or  cleaners, many strange additives  are  put  in things  we  ingest...

I would  try  a  basic  olive oil  or  coconut oil  on  the lips....something  very  simple  & not  complex....vitamin e oil...

I  would  also  take  probiotics  & digestive  enzymes  if  you don't  already to  help  your  digestion....

For me  it  sounds like a reaction  to something.....have  you done  a  food  journal?

hope  you  find  a  clue  & get  relief  very soon....

[scorpio]

Kareng - I have not been to a dentist, though will look into it. Thanks for your help!

 

Mamaw - I haven't worn lipstick in a while (after this peeling issue started), though I used it once and afterwards my lips were quite inflamed and red. Not sure if there is a connection. On a daily basis i've started using lanolin which helps moisturise, though the skin comes off more easily rather than getting hard, crusty, and sticking to my lips (which looks terrible!). I've also tried olive oil and coconut oil - which has to be continuously applied throughout the day and helps a bit with moisturising but the skin still gets hard and crusty. Though nothing stops the peeling. In relation to the cleanses and facial washes I stopped using those as well when the peeling began (i just use plain water and sometimes milk to cleanse my face) - but to no avail. My facial skin has actually gotten worse this year with a lot more redness . I have also been taking probiotics daily but not digestive enzymes. Will look into the digestive enzymes.

 

Regarding the food journal - I can't really tell what food causes the peeling because they just continuously peel (so it's hard to determine a connection), maybe I can find a connection between the redness/inflammation and a food? Are there any specific foods that you suspect that would cause such inflammamation/peeling? Thank you so much

Edited April 2, 2015 by scorpio

[mamaw]

what  about  rosacea? I know it  sounds  a tad  off  but at times when I have a  very bad  rosacea  flare my  lips  get  burned  & parched  for  weeks....dehydration  again  sounds  incorrect  because  we all think  we  drink  enough... electrolytes added  may help as well....

[scorpio]

hmm I'm not sure if it is rosacea because it just affects my lips. I will bring it up with my dermatologist when I go see her though.

[murphy203]

I have a similar thing, bottom lip only, and my dermo identified it as actinic cheilitis, and successfully treated it by freeze burning the area.

[scorpio]

Thanks for your reply Murphy203. I was afraid someone would bring actinic cheilitis up lol. From my understanding actinic cheilitis is caused by sun damage but I haven't really been exposed to much sun to be honest (I'm only in my early 20s). I've also checked pictures of actinic cheilitis it looks quite different from my condition. Also, I've read that actinic cheilitis only occurs on the bottom lip? Mines on both lips, although my bottom lip is affected more. My condition looks similar to exfoliative cheilitis from what I've read - there isn't a real cure for this one. I am going to a new dermatologist soon and will definitely bring this up with her. It is one of my concerns but I'm hoping it isn't actinic cheilitis.

Edited April 4, 2015 by scorpio

[cyclinglady]

Six to eight months on a gluten free diet is not very long. The learning curve is so steep! I understand that your antibodies have dropped dramatically, but I think that recovery still takes much longer. I felt better and my anemia resolved within six months, but my intestinal damage took about two years. I have not had a follow-up endoscopy yet, but I am confident that I have healed. So many of my food intolerances are gone. Even my allergies (seasonal) are so much better. Tingly legs and itching skin (no rash), crimping stomach, thyroid nodules and enlargement have all gone.

If I could just conquer menopausal symptoms!

More time might be something to consider for you. I wish you well.

[scorpio]

Cyclinglady - My parents also think that I should wait and just give my intestines time to heal rather than stress about this. They do think celiac disease is causing the peeling lips because it occurred at the same time as the severe constipation and it led to my diagnosis. It could be possible that for the peeling to stop the antibodies need to be below 15 (the normal level), in that sense I might still be reacting. However, what concerns me is that I have not seen any improvement in the peeling after starting the diet, although the blistering, inflammation/puffiness and redness has improved. Also, I just feel like I'm giving up if I just leave it and wait (rather than do something about it). It is so painful and I feel so self-conscious. Thanks for your advice  

[Madhuri]

I had cracking at the corners of my mouth and rapid peeling of my lips. I started taking B2 and B6 and it has almost healed. 

[scorpio]

Thanks for your response Madhuri. I'm taking a B complex at the moment that provides me with the daily requirements of those vitamins - should that not be sufficient? I guess I could try taking B2 and B6 separately just to see if that makes a difference. How long did it take (after taking the B vitamins) for you to see results? I've also had a blood test to check my vitamins, which revealed low levels of iron and vitamin D not Vitamin B though. Have your celiac antibody blood levels dropped to the normal level? I'm just wondering because it could be possible that for the peeling to stop the antibodies need to be below 15 (the normal level), in that sense I might still be reacting. Thank you

[cap6]

This posting really blew me away!  My lips get very red and inflamed to the point where I look like one of those little kids that constantly licks their lips.  They peel, heal and then we start the cycle all over again. Very embarrassing.  This started about a year before I was diagnosed.  I have been gluten free for five years now and still struggle with it.  The dermatologist had no clue and was rather dismissing when I talked about it maybe being related to celiac.  I've seen the derm. several times, two different ones.  The last doctor told me I was probably allergic to toothpaste.  Really!   I have an ointment that I use and figured IU would just have to live with this.  I will be watching responses on this issue! 

[scorpio]

Hey Cap6, 5 years of suffering with this is a very long time. I do think that celiac triggered the lip problem, so I'm hoping that a bit more time on the diet will heal my lips (although i'm doubtful). I'm thinking it might be related to a food intolerance, have you tried going on an elimination diet? Right now i'm trying my luck with herbs and then will try an elimination diet. Don't give up, there must be a cure out there

[cap6]

It is a long time.  But the frustrating part is that it is not constant but rather outbreaks.  So.. I go to my primary dr and ask for a referral to the derm.  By the time the referral comes through and I finally get the derm apt my lips are cleared up.  The derm looks at me like I'm crazy.  I try to explain and ask if I can call the next time I get an outbreak.  So it happens and guess what...the referrel has expired!  And we start all over.  Medical plans!  grrr.  Oh well. 

[greenbeanie]

I don't have a solution to the lip problem (sorry), but I do have a suggestion for the dermatologist appointment issue: Take photos! If you can show the doctor a photo of how it looked at its worst, that may help them take it seriously, even if it's improved by the time you get in for your appointment.

I found this very useful both for my daughter's rashes and for my own tongue swelling. By the time we ever got in to see a doctor, the problems had often improved enough that it looked somewhat unusual but not alarming. Then one day I thought to take photos, and voila! Suddenly they took it seriously. That didn't actually lead to a solution at the time - it's hard to diagnose things based on pictures - but at least it got a medical professional on our side who recognized that there was a real problem. Good luck.

[across]

For years my lips would peel horribly (like sking coming off in sheets), crack, and bleed. I was constantly chewing on them because there was always dead/hardened skin on them. It was painful and gross.

 

Then I discovered that I was sensitive to petroleum and the coloring in lipstick. Putting chapstick on was only making it worse due to the petroleum. I tried natural chapsticks, but some of them seemed to be problematic too. I finally found a tea-tree oil chapstick that solved my problem. The only problem was that it stunk! Finally, after several years of looking, I found one that works like a charm and doesn't stink- Dr. Bronner's magic organic lip balm. Other natural chapsticks still cause me problems sometimes, although I'm not sure why.

 

It's possible that the tea tree oil one might have helped clear the problem up (I hear that tea tree is antiseptic), and then Dr. Bronner's kept me healthy. Whatever the case, I've had soft, smooth, crack-free, pain-free lips for years now, for which I am thankful to God! (My lip problem was solved before my gluten problem).

 

One more thing -- getting sufficient Omega 3's through fish oil supplementation seems to help me a lot with my skin and my lips!

 

I still can't wear lipstick -- except Red Apple Lipstick. For some reason, the color in those doesn't bother me. They are gluten free. My lips do get a little dry when I wear it, but not too bad.

[cap6]

I like the picture suggestion!  Like, why didn't I ever think about that!!!  We just moved to a new state which means new health insurance so I will prob start this over again - this time with pics. 

[scorpio]

I agree with Greenbeanie definitely take photos when your lips are at the worst to show to your derm.

 

Across - I've stopped using lipstick and I don't use petroleum either, the only thing i've been using is Lanolin (made from a company called Lanolips) it's the only thing that helps me hide this issue and makes it look like i have normal lips. I might add a fish oil supplement to my regime, I did try adding a capsule with both fish and evening primrose oil but I ended up reacting to the evening primrose oil so I stopped taking them. Thanks for your suggestions

[HauntedEyes]

I used to get the same problem, especially after first going gluten free when I was first diagnosed, or if I knew I had accidentally been glutened. For me, it is always a sign of low iron or an allergic reaction to a food. If I know I haven't been exposed to a food allergen, then I know I was probably glutened and have gone anemic. Usually if I supplement with some iron, within a day or two it goes away. I usually have to maintain the iron supplements for about a week, then I am usually healed up enough.

[scorpio]

Thanks for your reply HauntedEyes! Since being diagnosed I've had low iron (though not anemic) which hasn't change even on supplements. I suspect that it maybe a food allergy but i just can't figure out what food maybe triggering it because the peeling seems constant. If you don't mind me asking, what foods do you react to? 

[Larkie]

I have been suffering with constant lip peeling for a year and a half now. At times my lips are very red, sore, blistered and inflamed. The peeling happens in a cycle - it takes 5-6 days to peel off where the skin gets hard and crusty and eventually peels off then the skin is raw again. The skin when in contact with water goes white. This has made my life very distressing. This lip problem arose at the same time as my severe constipation, after 6-8 months of suffering I was diagnosed with Celiac Disease. Initially my IGA levels were above 250 (Tissue Transglutaminase) and my IGG levels were 176 (Deamidated Gliadin). After 6 months on the gluten free diet my IGA levels have dropped to 12 and my IGG levels have dropped to 61. These should be (for a normal person) under 15. Unfortunately, my lips still peel constantly which is non-stop.

My GP thinks the lip peeling is a result of celiac disease but is still baffled as to why it has not improved on the gluten free diet. I have to say there has been slight improvement in the blistering as well as the inflamed/puffy lips after starting the gluten free diet, though the peeling is still constant. Before starting the gluten free diet I also had cracks at the corners of my mouth, which have resolved after starting the diet. I have been to a dermatologist for this lip peeling issue who gave me a cream (elidel) to apply, which hasn't helped even a bit. I have also tried increasing my vitamin intake - I added a tablet which has iron, vitamin B complex, and zinc mixed together. Unfortunately this has also not helped.

I have no idea what else to do about this issue! It is very painful and I do really want to get rid of it. Any assistance/advice would be highly appreciated. Sorry for the long post and thank you in advance

I have the same issue, my lips get inflammed, get crusted then peel. But what is wrong is that they are inflammed 24/7, and i do not know what caused it, this started 4 months ago.. i do not have celiac disease(not that i have been tested anyways) but it hurts since it is always red and tender. Even the area around my lips (1-2cm wide area) get red sometimes and peel most of the time. My whole mouth area gets white when it is in the water.

I have seen 3 dermatologists, and i asked for tests to be done but they just ignore my requests and give me steroid cream and moisturizer. None of those work and they dont know how much agony this causes me. If i stop using moisturizer for even 2 hour, the peeling shows very obviously and if i stop moisutizing for a few days, crusts show up and my lips become hard which makes it so hard to eat.

I heard liver cleanses/colon cleanses will help since most say this is due to toxic in the body but i have never tried it.

I have not been allergic to any food before this though.

[HauntedEyes]

Thanks for your reply HauntedEyes! Since being diagnosed I've had low iron (though not anemic) which hasn't change even on supplements. I suspect that it maybe a food allergy but i just can't figure out what food maybe triggering it because the peeling seems constant. If you don't mind me asking, what foods do you react to? 

I have mild chicken egg and corn allergies. IgA intolerant to gluten (celiac responses), casein (dairy), soy, egg, beef, pork, chicken, tuna, nightshades, corn, and rice. IgG intolerant to coffee (severe, so treat like an allergy), garlic, sesame, avocado, asparagus, crab, chicken egg, watermelon, and blueberries. I have gotten the extreme facial swelling to garbanzo beans (and soon thereafter lentils and most other legumes except peanuts, but those were a more mild reaction), celery, honey dew, cantaloupe and mango. The facial and lip swelling has been to any of these items, and the severity or whether I react, comes and goes I think as my body heals up from the damage caused by celiac. My allergist thinks the facial reactions are actually caused by tree or dust allergy ... body just is confusing the food proteins with the tree and dust proteins. 

 

At the time I was reacting to the legumes, celery, and melons, the worst that was within 6 moths to a year of going gluten free. I have recently started adding those back in some, but I still watch for reactions ... still can get a slight lip swelling with the legumes and celery. I watch closely for a genuine celery reaction because celery allergy can be as severe as peanut allergy. I think I will be cutting out celery and the melons again because the last time I tried them, they caused the inside of my mouth to burn. I am VERY allergic to poison ivy, so I am not surprised at the mango reaction ... I have not allowed myself to add that back in. 

 

I do think I am getting slight lip swelling from some other food, but it is difficult for me to pinpoint right now. 

 

I do allow myself some of these foods because I have to eat SOMETHING. I base what I eat on what I react to the least. I avoid the dairy, chicken egg, and soy as much as I can. Totally avoid gluten. I do allow myself the meats because I have to get protein somehow. I stomach beef the best, can do small amounts of the pork, don't like tuna anyway so still don't eat it, though I do eat other fish and shell fish. I don't do turkey very often, either ... bothers my stomach. I sometimes eat lamb if I can find it on sale. I am still not stomaching chicken, so don't eat it. Almond milk and nuts are OK for me. I can have the IgG foods (except coffee and the eggs) if I do small amounts and rotate them. I avoid the nightshades, definitely don't stomach potatoes, though can occasionally do small amounts of tomatoes or peppers. Sometimes sneak in some rice. I eat a lot of the other vegetables and fruits, though not too many apples. I think apples are one of my mild lip swelling foods, but I am pretty sure that is to tree allergy.

[scorpio]

Larkie - Thanks for your response. I've been to two dermatologists and an allergist, they all gave me steroid creams to apply which didn't have any affect on my lips. I've booked an appointment to see an oral specialist next week hopefully she will be helpful. I've also read about the liver and colon cleansing but i'm not sure if it's safe - that will be my last resort to be honest. At the moment i'm focusing on accepting this condition and making life less stressful At least moisturizing helps stop the peeling (although temporarily) for you - my lips still peel even if I moisturize them 24/7. 

 

Haunted Eyes - Thank you so much for your detailed response. I really appreciate it. What testing did you do to find out you have all these food allergies? I went to an allergist here and she said that she had never seen this lip problem before and it was unlikely that a food allergy was causing the peeling. She didn't do any testing at that time (although a year back i did get a prick test done for another issue and no food allergies showed up only mild dustmite allergies). 

[GF Lover]

Hi Scorpio.

 

I do agree that it may just take more time.  I had some issues that took two years to resolve.  It also sounds allergy or immune related.  Have you searched for this issue connected to Autoimmune Diseases?  AI Diseases like to have friends.  Have you considered Histamines?  I second the notion of cutting out all Sodium Laural Sulfates.  Could Floride be causing it?

 

I strongly !!!!! disagree with cleanses.   This sounds incredibly uncomfortable to deal with and I'm sorry your going thru it.

 

Colleen