Jump to content

  • 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

By rubylou
in Coping with Celiac Disease

Recommended Posts

rubylou Newbie
rubylou
Posted

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
S-J-L
Posted

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
dollamasgetceliac?
Posted

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
JNBunnie1
Posted
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
Ridgewalker
Posted

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
jewi0008
Posted
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
rubylou
Posted
  • Author
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
rubylou
Posted
  • Author
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
Ridgewalker
Posted
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
1939Donna
Posted

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
Kaycee
Posted

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
LuvMoosic4life
Posted

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
frec
Posted

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
sickchick
Posted

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
rubylou
Posted
  • Author

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
LuvMoosic4life
Posted
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
jewi0008
Posted
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
dollamasgetceliac?
Posted

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
rubylou
Posted
  • Author

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
jewi0008
Posted
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
rubylou
Posted
  • Author
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
jewi0008
Posted
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
rubylou
Posted
  • Author
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
dollamasgetceliac?
Posted

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
jewi0008
Posted
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.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,685
    • Most Online (within 30 mins)
      7,748
    tdouglas2901
    Newest Member
    tdouglas2901
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Draft gluten-free ciders… can they be trusted ?

      By Scott Adams · Posted

      I'd go with a vodka tonic, but that's just me😉
    • Rejoicephd
      Draft gluten-free ciders… can they be trusted ?

      By Rejoicephd · Posted

      That and my nutritionist also said that drinking cider is one of the worst drink choices for me, given that I have candida overgrowth.  She said the combination of the alcohol and sugar would be very likely to worsen my candida problem.  She suggested that if I drink, I go for clear vodka, either neat or with a splash of cranberry.   So in summary, I am giving ciders a rest.  Whether it's a gluten risk or sugars and yeast overgrowth, its just not worth it.
    • Inkie
      Tea Bags and Gluten

      By Inkie · Posted

      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      Tea Bags and Gluten

      By Scott Adams · Posted

      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.