Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Inside Of My Mouth Shedding


rubylou

Recommended Posts

rubylou Newbie

Before being diagnosed with celiac....my mouth was shedding it's lining on a daily basis. After going gluten free, it stopped shedding. I was just wondering if anyone else had this same problem. My doctors and my dentist thought I was crazy, heck, I thought I was going crazy. I am just very curious to see if anyone had the same situation, or if I'm the only mouth shedder on the planet.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



S-J-L Apprentice

Actually, this happened to me. I havnt had it since being gluten free. I never made the connection. I always just thought my mouth was sensitive to tooth paste, cos it would happen after brushing my teeth. And then i would lick the skin off with my tongue.....gross.

dollamasgetceliac? Explorer

I can't say shedding , but definately many many mouth sores. I think floride makes it worse? I have improved with the gluten-free/CF diet.

JNBunnie1 Community Regular
I can't say shedding , but definately many many mouth sores. I think floride makes it worse? I have improved with the gluten-free/CF diet.

My lips used to shed, really bad, but not the inside of my mouth. I used to have to use a steroid cream to relieve the pain on my lips. All better now!

Ridgewalker Contributor

If the problem stays gone, that's awesome- but if it comes back, I would suspect a candida infection. Just something to keep in mine IF it comes back.

jewi0008 Contributor
Before being diagnosed with celiac....my mouth was shedding it's lining on a daily basis. After going gluten free, it stopped shedding. I was just wondering if anyone else had this same problem. My doctors and my dentist thought I was crazy, heck, I thought I was going crazy. I am just very curious to see if anyone had the same situation, or if I'm the only mouth shedder on the planet.

What do you mean your mouth is "shedding?" And does it irritate or hurt you?

rubylou Newbie
What do you mean your mouth is "shedding?" And does it irritate or hurt you?

By "shedding" I mean like whole layers of skin would peel off on the inside of my mouth and cheeks. It did hurt, but it wasn't like there were sores. I'm curious about the candida infection....what exactly should I be looking for?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



rubylou Newbie
Actually, this happened to me. I havnt had it since being gluten free. I never made the connection. I always just thought my mouth was sensitive to tooth paste, cos it would happen after brushing my teeth. And then i would lick the skin off with my tongue.....gross.

OMG......same exact thing!!!!!!!!!! I feel so relieved that someone else had the same problem! My shedding stopped dead nuts as soon as I went gluten free. Thanks, all of a sudden, I'm not alone :D

Ridgewalker Contributor
I'm curious about the candida infection....what exactly should I be looking for?

Symptoms vary by person quite a bit. Try googling "candida infection mouth" or something along those lines. I'll also look at some websites I have bookmarked, and get back to you tonight.

1939Donna Newbie

I had the same problem of sheets of tissue from the inside of my cheeks sloughing off. It did not hurt but was very annoying. My dentist said it must be a reaction to the additives in toothpaste. I tried everything. Could not figure out for Years>>>>>>>>>>. until I stopped using my electric toothbrush and then I realized I had no more shedding. I now brush with a regular toothbrush and I have not had the problem since. Strange isn't it. I think it must be trama to the tissue from the agitation of the electric toothbrush that did it. Hope this is the answer for others as well.

Kaycee Collaborator

I've had shedding too. It didn't hurt, was more of a nuisance than anything. It wasn't all the time, but I can remember a couple of times when I gave up smoking, only to have the inside of my mouth shed for a few days, just inside my bottom lip, after the initial smoke free days. It took a few tries to give up smokes. Now that I am totally smoke free I've not noticed any shedding.

Cathy

LuvMoosic4life Collaborator

OMG!!!! I thought I was the ONLY one! lol. YES, this happened to me before going gluten-free also!, it used to get imbarrassing because I'd go to work and skin would still be shedding in my mouth! it usually was really bad first thing in the morning after sleeping all night......after a while it got to a point where the skin started tearing away so much that I got soars, they thought I was nutts also and just said it was type I herpes/canker soars-lol now that I'm gluten free i havent had one problem, just occasional red dots in my mouth.

frec Contributor

I used to have trouble with the inside of my mouth shedding. My dental hygienist told me some people have that problem from toothpastes with whitener. As long as I don't use those I'm fine--haven't had it happen since.

sickchick Community Regular

for me, what I noticed was my mouth skin shedding when my DH rash would be active... and since being gluten-free I don't have that problem anymore...

be well :P

rubylou Newbie

I remember telling my gastro Dr. (before I was diagnosed with celiac) that my mouth was shedding....and he just said "huh......I've never heard of that before, it must be your toothepaste". So then I asked my dentist, and he said the same thing.....it must be your tootepaste. So then I thought maybe the toothepaste was causing all my stomach problems too. At one point, I even thought the water at my home was causing all the problems. Good Lord, at one point I thought someone was trying to poison me..lol. After breaking up with gluten....my mouth has not shed, and I still use the same toothepaste I always did. I did get a water softener installed though, and I'm not accusing my husband of poisoning me anymore.....(heavy sigh) life is good! B)

LuvMoosic4life Collaborator
I remember telling my gastro Dr. (before I was diagnosed with celiac) that my mouth was shedding....and he just said "huh......I've never heard of that before, it must be your toothepaste". So then I asked my dentist, and he said the same thing.....it must be your tootepaste. So then I thought maybe the toothepaste was causing all my stomach problems too. At one point, I even thought the water at my home was causing all the problems. Good Lord, at one point I thought someone was trying to poison me..lol. After breaking up with gluten....my mouth has not shed, and I still use the same toothepaste I always did. I did get a water softener installed though, and I'm not accusing my husband of poisoning me anymore.....(heavy sigh) life is good! B)

ditto on this. I when crazy also, thinking it was the water! now I'm gluten-free, still use the same toothpaste, no shedding!

jewi0008 Contributor
I remember telling my gastro Dr. (before I was diagnosed with celiac) that my mouth was shedding....and he just said "huh......I've never heard of that before, it must be your toothepaste". So then I asked my dentist, and he said the same thing.....it must be your tootepaste. So then I thought maybe the toothepaste was causing all my stomach problems too. At one point, I even thought the water at my home was causing all the problems. Good Lord, at one point I thought someone was trying to poison me..lol. After breaking up with gluten....my mouth has not shed, and I still use the same toothepaste I always did. I did get a water softener installed though, and I'm not accusing my husband of poisoning me anymore.....(heavy sigh) life is good! B)

So when all of your mouths "shed," does it almost leave like red patches temporarily in your mouth?

dollamasgetceliac? Explorer

If it does not go away after a while , maybe it is thrush. People get that who use inhalers. You have to rinse your mouth if you use an inhaler , because the prpellent in the inhaler can cause thrush. Just go to mayoclinicdotcom and look for thrush see if the photo looks like the inside of your mouth.

Best Wishes

rubylou Newbie

I'm positive it is not thrush....I never had any white spots, it wasn't sores......it was just shedding, it was like a thin layer of membrane was peeling off my cheeks. I would have to kinda prod it with my toungue, to get it to come off, and where it was attached, it would hurt for a spell after I pulled the skin off. I swear, I asked everyone I knew if that ever happend to them before, and not one soul ever heard of it before. THIS is the first time that anyone has ever validated my problem. I don't know if there were red spots inside my mouth, as I never really looked. But all I know, is that after going gluten free.....it stopped completely.....so, I'm assuming, it had nothing to do with any other factors other than gluten. I never used an inhaler, nor an electric toothebrush....or toothepase with whitening. I'm positive it was gluten, because thats the only variable that changed.

jewi0008 Contributor
I'm positive it is not thrush....I never had any white spots, it wasn't sores......it was just shedding, it was like a thin layer of membrane was peeling off my cheeks. I would have to kinda prod it with my toungue, to get it to come off, and where it was attached, it would hurt for a spell after I pulled the skin off. I swear, I asked everyone I knew if that ever happend to them before, and not one soul ever heard of it before. THIS is the first time that anyone has ever validated my problem. I don't know if there were red spots inside my mouth, as I never really looked. But all I know, is that after going gluten free.....it stopped completely.....so, I'm assuming, it had nothing to do with any other factors other than gluten. I never used an inhaler, nor an electric toothebrush....or toothepase with whitening. I'm positive it was gluten, because thats the only variable that changed.

And to confirm for you (re.people thinking it may be thrush)...the first time I ever brought my oral problems/mouth shedding up to my dentist (over 4 years ago) - he, too, thought I might possibly have thrush. He said, "well I don't think you do, but you may." So, he put me on a thrush antibiotic. Nope..no good. Did nothing. If anything it annoyed my mouth more! You are NOT crazy. This is a real phenomenon going on inside of your mouth. sometimes, now, when I go to the Dr I will start crying because they are all the same, in saying, "well...I don't SEE any sores or anything." And I have to explain over and over and over and over....that they won't find anything. That it's a chronically frustrating irritation! Does your whole mouth irritate you, too?

Who said they get red spots in their mouth? I get these, too! They can come and go w/in a day. Do they look like mini-blood blister with NO pain?

rubylou Newbie
And to confirm for you (re.people thinking it may be thrush)...the first time I ever brought my oral problems/mouth shedding up to my dentist (over 4 years ago) - he, too, thought I might possibly have thrush. He said, "well I don't think you do, but you may." So, he put me on a thrush antibiotic. Nope..no good. Did nothing. If anything it annoyed my mouth more! You are NOT crazy. This is a real phenomenon going on inside of your mouth. sometimes, now, when I go to the Dr I will start crying because they are all the same, in saying, "well...I don't SEE any sores or anything." And I have to explain over and over and over and over....that they won't find anything. That it's a chronically frustrating irritation! Does your whole mouth irritate you, too?

Who said they get red spots in their mouth? I get these, too! They can come and go w/in a day. Do they look like mini-blood blister with NO pain?

YES...my mouth was sore, but not like make me cry pain, more like annoying pain, almost like it was raw. Is your mouth still shedding after going gluten free? And about the Doctors not knowing what your going through...after a huge crying jag to him....he put me on zoloft...lol, but I couldn't take it cuz it hurt my stomach. I went to the Doctors so much, that I actually heard the nurse tell another nurse (about me) that I was there all the time. I'm actually concerned because I've had more catskans (sp?) in 3 years, than anyone is suppose to have for their entire life. The day I got my paper work in the mail, with test results stating that I have celiac disease.....instead of being upset about my lifestyle changing.....I cried like a baby because I found out that my illness WAS real, and had a name.

jewi0008 Contributor
YES...my mouth was sore, but not like make me cry pain, more like annoying pain, almost like it was raw. Is your mouth still shedding after going gluten free? And about the Doctors not knowing what your going through...after a huge crying jag to him....he put me on zoloft...lol, but I couldn't take it cuz it hurt my stomach. I went to the Doctors so much, that I actually heard the nurse tell another nurse (about me) that I was there all the time. I'm actually concerned because I've had more catskans (sp?) in 3 years, than anyone is suppose to have for their entire life. The day I got my paper work in the mail, with test results stating that I have celiac disease.....instead of being upset about my lifestyle changing.....I cried like a baby because I found out that my illness WAS real, and had a name.

OMG...this is me EXACTLY! I'm so glad I found you! When the Dr's ask me to explain my pain in my mouth the way I typically describe it is...it's not like there are sores; it doesn't hurt like a canker sore (although I get them from time-to-time) it feels like I"m sticking my tongue out and someone is constantly rubbing a carpet over it! Anyways, I have not had any shedding since going gluten-free. HOWEVER, my mouth still feels raw a lot...CC maybe? If I purposely ingest gluten and binge (ugh...the devil!!!) I will get awful shedding on my cheeks and always in my bottom lip. It's gross. But after a few days will go away! The thing is, I am not a confirmed Celiac as my GI did not know what he was doing so I had been gluten-free for awhile, then took the Blood test and did the Endo/Colon. It did not show Celiac. He ended up diagnosing me with Proctitis...a form of Colitis. I know I"m Celiac or at the very least gluten intolerant. Even as a small child I would get those cracks in the corners of my mouth...many other symptoms.

So...your shedding stops when you don't have gluten, but is your mouth still raw?

Yeah!!!!!!! I found someone with my problem. AMEN!

rubylou Newbie
OMG...this is me EXACTLY! I'm so glad I found you! When the Dr's ask me to explain my pain in my mouth the way I typically describe it is...it's not like there are sores; it doesn't hurt like a canker sore (although I get them from time-to-time) it feels like I"m sticking my tongue out and someone is constantly rubbing a carpet over it! Anyways, I have not had any shedding since going gluten-free. HOWEVER, my mouth still feels raw a lot...CC maybe? If I purposely ingest gluten and binge (ugh...the devil!!!) I will get awful shedding on my cheeks and always in my bottom lip. It's gross. But after a few days will go away! The thing is, I am not a confirmed Celiac as my GI did not know what he was doing so I had been gluten-free for awhile, then took the Blood test and did the Endo/Colon. It did not show Celiac. He ended up diagnosing me with Proctitis...a form of Colitis. I know I"m Celiac or at the very least gluten intolerant. Even as a small child I would get those cracks in the corners of my mouth...many other symptoms.

So...your shedding stops when you don't have gluten, but is your mouth still raw?

Yeah!!!!!!! I found someone with my problem. AMEN!

No...I don't have any soreness since being gluten free. I only get gluten accidentally, by assuming something is gluten free.......when first diagnosed, I fell off the wagon, but it takes me way to long to get better, so I am much better about staying away. My heart goes out to you....and I am listening, and I understand and believe you. :D

dollamasgetceliac? Explorer

Hi again;

I did reply earlier to you and now I remember that for many years I had something also wierd, That the tissue under my tongue would shed. There would be string like strands shedding, eventually they fell off. I always had sores in my mouth I thought it was the Crohn's. Now that I am gluten-free I only have minor sores , I did have the Doc look at it , he said: Celiac, but that was after they determined Celiac. I worry that I might be sensitive to any food that can cause this. It returned again recently and I am trying to find a toothpaste that does not have anything in it. Toms strawberry is good but I hate the Carageenan because I heard some bad things about it : like it can cause Miscarages and who knows what it does to the intestines, I thought I would like to find a toothpaste that is just the basics. Honestly at this point who cares what it tastes like.

jewi0008 Contributor
Before being diagnosed with celiac....my mouth was shedding it's lining on a daily basis. After going gluten free, it stopped shedding. I was just wondering if anyone else had this same problem. My doctors and my dentist thought I was crazy, heck, I thought I was going crazy. I am just very curious to see if anyone had the same situation, or if I'm the only mouth shedder on the planet.

Would you mind PM'ing me or posting what you eat in a day? I think I'm still consuming something with gluten...which is why the mouth thing won't go away! OR...maybe something I'm eating I'm also intolerant to? Suggestions? I want it gone for good! I also think that when I make a "mistake" it ruins my mouth for AT LEAST 2 weeks. Could that be?

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,392
    • Most Online (within 30 mins)
      7,748

    laurenM
    Newest Member
    laurenM
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.9k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • James47
      So as some of you already know I was 47 turning 48 before my diagnosis so a lot and a lot of internal damage. I no longer obviously drink beer unless gluten-free variants of it but does anyone else really struggle when just drink any sorts of alcohol now. I'm really thinking going tea total and avoiding it completely 
    • NavyMom
      Hi CathiJean, Wipe those tears my friend.  Finding out that you have celiac just gave you the cheat code on how to start feeling better!  It may feel like a loss right now, but honestly within 6 months you will start feeling better.  Within a year you will look back and wonder how in the world did I survive feeling like that for what feels like a lifetime?  You mentioned 15 years, that's about how long I have been really ill as well.  I had told every doctor I saw that I kept getting sick, infections, hair loss, joint pain, etc. and nobody would listen to me until I turned 45.  I went in for a colonoscopy and the doc says how often do you have bowel movements and I said usually between 10-15 times a day.  Suddenly I had someone actually listen to me and the testing began.  What I can tell you is use this forum, talk to peers, read everything you can about how to gluten-free your kitchen, encourage your family to participate in your journey (trust me they love you enough to make the effort), how to order food in restaurants, and how to avoid cross contamination.  Accept that you will make mistakes and allow yourself grace as you implement your new normal and have a clear understanding that going gluten free will begin healing your body in ways that you will not even begin to understand until you actually do it.  So, have faith that the nutrient deficiencies that you are probably experiencing right now can be corrected and you are on a bright path to feeling SO much better.  Think about how incredible your mom journey is about to become as you begin to feel better!!  Your kids are going to be amazed at your energy levels, ability to play and go do stuff...you are leveling up knowing that you have Celiac.  Knowing gives you power my friend, harness it and have gratitude that it was discovered...even if the docs missed it - you know now and keep moving forward.  You got this!! 
    • trents
      If you have been eating the gluten equivalent of 4-6 slices of wheat bread daily for say, 4 weeks, I think a repeat blood test would be valid.
    • englishbunny
      it did include Total Immunoglobin A which was 135, and said to be in normal range. when i did the blood test in January I would say I was on a "light' gluten diet, but def not gluten free.  I didn't have any clue about the celiac thing then.  Since then I have been eating a tonne of gluten for the purpose of the endoscopy....so I'm debating just getting my blood test redone right away to see if it has changed so I'm not waiting another month...
    • trents
      Welcome to the forum, @englishbunny! Did your celiac panel include a test for "Total IGA"? That is a test for IGA deficiency. If you are IGA deficient, other IGA test resultls will likely be falsely low. Were you by any chance already practicing a reduced gluten free diet when the blood draw was done?
×
×
  • Create New...