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

Problems With My Mouth


Elaine Allen

Recommended Posts

Elaine Allen Rookie

I am just wondering if anyone else with Celiac have what I can only refer to as something like

the roof of my mouth has been burned. It feels like the tissue is constantly peeling off.

Just wondering if this is from gluten that I could possibily still be getting from some unknown source.

Just wondering if its from gluten? <_<


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



Celiac.com Sponsor (A8-M):



Ursa Major Collaborator

It could be a symptom of another food intolerance as well. I get the same thing when I eat gluten-free products, like cookies. But if I just eat (or get contaminated) with regular gluteny things, it doesn't happen.

I am not sure yet what exactly is causing the burning and peeling. It could be tapioca, soy, rice..... the list is long. I don't really think I am going to test all of those things separately, since I am intolerant to all of them anyway. I just eat some gluten-free cookies once in a while, because I need a treat now and then. And it doesn't make me as sick as if I'd cheat on something containing gluten.

Elaine Allen Rookie
It could be a symptom of another food intolerance as well. I get the same thing when I eat gluten-free products, like cookies. But if I just eat (or get contaminated) with regular gluteny things, it doesn't happen.

I am not sure yet what exactly is causing the burning and peeling. It could be tapioca, soy, rice..... the list is long. I don't really think I am going to test all of those things separately, since I am intolerant to all of them anyway. I just eat some gluten-free cookies once in a while, because I need a treat now and then. And it doesn't make me as sick as if I'd cheat on something containing gluten.

Karen B. Explorer

My dentist gave me a free sample of Colgate Total that had Triclosan in it (like the stuff they put in anti-bacterial soap). It is gluten-free but it broke my mouth out and when I told her, she said she didn't like it personally but her patients liked getting free samples so she hands them out. Hmmm. I've had the same reaction from tarter control toothpast and sensitive teeth tooth past. So I stick with plain Crest.

You might want to try using plain baking soda for a week and see if it clears up.

lob6796 Contributor
I am just wondering if anyone else with Celiac have what I can only refer to as something like

the roof of my mouth has been burned. It feels like the tissue is constantly peeling off.

Just wondering if this is from gluten that I could possibily still be getting from some unknown source.

Just wondering if its from gluten? <_<

My mouth does the same thing and I get what I can only describe as ulcers on my lips as well. My doctor said it is from the Celiac. He said it would get better once I stop eating gluten. But like a PP said, if you have other food allergies, one of those could be causing it as well.

Abbygail Newbie
I am just wondering if anyone else with Celiac have what I can only refer to as something like

the roof of my mouth has been burned. It feels like the tissue is constantly peeling off.

Just wondering if this is from gluten that I could possibily still be getting from some unknown source.

Just wondering if its from gluten? <_<

I get this same thing and it goes down my throat as well, when I eat anything containing tapioca. Took me awhile to pin it down but that does it for me. It is in so many prepared products. I know if I have a gluten-free cookie or bread that I will have to tolerate that for a couple of days. Makes it not worth it. :angry:

JNBunnie1 Community Regular

I used to get the ulcers on my lips til I went gluten free. Now I sometimes get this thing where my tongue turns red and burns a lot, but it's not related to any specific food so far, because I've had those foods again and they haven't caused it. I think maybe it was a drug reaction, but I'll have to take that drug again to find out. Maybe we're all just wierd!


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



Celiac.com Sponsor (A8-M):



jmd3 Contributor
I am just wondering if anyone else with Celiac have what I can only refer to as something like

the roof of my mouth has been burned. It feels like the tissue is constantly peeling off.

Just wondering if this is from gluten that I could possibily still be getting from some unknown source.

Just wondering if its from gluten? <_<

I get this too = before I was diagnosed, I would get ulcers in my mouth. I also felt likw the skin was peeling off on my mouth.

Lately, I have been getting an ulcer onn the outside of my lips...I am hoping that it is the gluten still in me trying to come out.

I hope you feel better soon!!!

Teacher1958 Apprentice
I am just wondering if anyone else with Celiac have what I can only refer to as something like

the roof of my mouth has been burned. It feels like the tissue is constantly peeling off.

Just wondering if this is from gluten that I could possibily still be getting from some unknown source.

Just wondering if its from gluten? <_<

I've gotten canker sores and these horrendous sores on the side of my tongue that make it hard to even eat and swallow because they hurt so badly. It's gotten better since I went off of gluten, but sometimes when my seasonal allergies are bad, the canker sores will come back.

dragonmom Apprentice

My tongue is sore most of the time and my taste buds seem to flair up most of the time. I also have dry mouth. I have no clue as to what causes any of it . I figure just another fun day. :unsure:

mamabear Explorer
I am just wondering if anyone else with Celiac have what I can only refer to as something like

the roof of my mouth has been burned. It feels like the tissue is constantly peeling off.

Just wondering if this is from gluten that I could possibily still be getting from some unknown source.

Just wondering if its from gluten? <_<

Oral lesions are common to celiacs....stomatitis,glossitis,aphthous ulcers.....I believe some of it is the derangement of the mucous tissues from celiac proper, and some is a side effect of the malnutrition. Sometimes high dose B vitamins and vitamin C may help. Also when it is very painful, a mix can be made by the druggist combining equal parts liquid Maalox,liquid Benadryl and viscous lidocaine as a swish and expectorate(DO NOT SWALLOW) for temporary relief.

WE CALL IT "MAGIC SWIZZLE" !

tmk Explorer

that is so weird that you posted this b/c i was just thinking the same thing -- i've had sores on the roof of my mouth off and on now for a while -- like it's gotten burnt or something. gosh -- the more and more i read this forum, the more and more i think i do i have celiac!

hope you feel better!

TLT Newbie

Sorry to say this but: Yeah I am not alone. I have gotten sores in my mouth and on my tongue for years now. One doc said they are from celiac and the dentist said it is from over production of acid. They are in general better now that I am off of gluten, but just a tiny bit of the crazy stuff will set my mouth off like crazy. The dentist recommended using Rembradt toothpaste, and that has helped and so has rubbing some baking soda in my mouth after brushing, doesn't taste the best but helps the sores and the roof of the mouth heal and not hurt so bad. The reason the dentist said not to brush with baking soda is it breaks down the enamel of your teeth. Hope that helps some of you, when the sores are bad I put a bit of baking soda in my mouth and swish it around and the sores heal quicker and they don't hurt so bad, well except when you eat or swallow, :rolleyes: . Good luck.

Murph Newbie

Yay Magic Swizzle! Hehe

It sounds like something called Thrush, caused by Candida. I think it's supposed to be white(ish?) to be thrush and I'd guess it's hard to see the roof of your mouth. Still I'd look into it.

mamabear Explorer
Yay Magic Swizzle! Hehe

It sounds like something called Thrush, caused by Candida. I think it's supposed to be white(ish?) to be thrush and I'd guess it's hard to see the roof of your mouth. Still I'd look into it.

Thrush can look like a red tongue, but it usually has little white specks near the ulcerations or rough spots...on the tongue or anywhere in the oral mucosa :o . A better med for that is Nilstat.....also Rx. Bet there are members who know of herbal/alternative therapies.

  • 2 weeks later...
jewi0008 Contributor
My tongue is sore most of the time and my taste buds seem to flair up most of the time. I also have dry mouth. I have no clue as to what causes any of it . I figure just another fun day. :unsure:

Hi!

Can someone please tell me if I'm crazy? The sides of my tongue always hurt. Dry mouth. Sometimes my tongue tingles and pulses. I get this referred pain from my teeth to tongue. If I go gluten-free for 2 weeks, then and only then it might go away. Is anyone else like this? I'm trying to connect if my mouth is correlated to gluten? HELP!

jewi0008 Contributor
My tongue is sore most of the time and my taste buds seem to flair up most of the time. I also have dry mouth. I have no clue as to what causes any of it . I figure just another fun day. :unsure:

Hi!

Can someone please tell me if I'm crazy? The sides of my tongue always hurt. Dry mouth. Sometimes my tongue tingles and pulses. I get this referred pain from my teeth to tongue. If I go gluten-free for 2 weeks, then and only then it might go away. Is anyone else like this? I'm trying to connect if my mouth is correlated to gluten? HELP!

  • 2 weeks later...
Janeti Apprentice

i get that too...sometimes the top of my mouth feels raw. then it disappears for a short time, and comes back...i wonder if it is a food allergy??

jmd3 Contributor

Thought I would post a couple of different kinds of sores that celiacs and people with food allergies are prone too -

APTHOUS ULCERS and ANGULAR CHEILOSIS

I would get the the apthous with my celiac - and my daughter gets the angular cheilosis - with her thyroid

Thankfully I have not had any for awhile - but I am taking the pro-biotics, which includes good bacteria, and not eating gluten anymore!

CANKER SORES (apthous ulcers)

These are painful, grayish-white open sores, of varying size, found inside the mouth on the cheek, tongue, gums, roof of the mouth, or the inside lip. The exact cause is not well understood, but it may result from an abnormal immune system response. Emotional stress, fatigue, spicy or acidic foods, scratches from dentures or brushing, poor oral hygiene, and food allergies definitely influence and trigger these sores.

Options for symptomatic relief:

A. Two non-prescription products that have worked well for my patients are Zilactin-B gel, and Kank-a liquid. Dry the

sore by gently blotting, then apply your choice of medication with a cotton-tipped applicator until the sore turns

white and is less sensitive. It only takes about 10 seconds. Reapply if pain returns.

B. Rinse or apply a carbamide peroxide medication (such as Gly-oxide, Amosan, or Cankaid) to the sore.

C. Apply non-prescription canker sore medications that usually contain benzocaine, menthol, camphor, eucalyptol

and/or alcohol. Note: This is not recommended if you are in homeopathic treatment!!

D. Apply a wet, black tea bag to the sore. It contains tannin, an astringent. A non-prescription product that contains

tannin which can be applied is Tanac.

E. Rinse with a solution of 1 tablespoon of hydrogen peroxide in a glass of water.

F. Rinse with Folamint mouthwash. Note: This is not recommended if you are in homeopathic treatment!!

G. Rinse with Mylanta or milk of magnesia.

H. Rinse with a strong tea of goldenseal root.

I. Squeeze vitamin E oil onto the sore, and repeat several days.

J. Touch the sore with a styptic pencil.

K. Rinse with a mild solution of baking soda and water.

L. At the onset of a sore, take a high dosage of vitamin B-complex.

M. Allow a 50 mg zinc lozenge to dissolve directly on the sore 3xday.

N. Rinse with a solution of Lactobacillus acidophilus 3xday (dissolve 10 capsules in water)

O. Gargle with a deglycyrrhizinated licorice (DGL) solution 4xday (200 mg of DGL mixed in a glass of water)

Options for prevention or lessened frequency:

A. Supplements have helped. One is L-lysine, which is an amino acid, in which a 600 mg tablet is taken 1-3 times a day.

The other is Lactobacillus acidophilus, a natural intestinal bacteria, in which 1 capsule is taken 3 times a day. These

are non-prescription supplements which must be taken continuously to be effective, much like vitamins. Try one or

the other, not both simultaneously. The ideal dosage is determined through trial and error, so if necessary, increase

the dosage until effective, or decrease an effective dosage until symptoms reappear to determine the minimum

effective dosage. Instead of a capsule, you could eat 4 tablespoons of unflavored yogurt each day that contains the

active cultures of Lactobacillus acidophilus.

B. Avoid foods that seem to trigger the sores. Common food triggers are coffee, spices, citrus fruit, nuts high in arginine

(especially walnuts), chocolate, strawberries, rye bread or rye crackers, and acid juices such as orange, tomato, grapefruit,

pineapple, and Snappy Tom.

C. Have a body chemistry that is balanced in minerals, acidity, and alkalinity.

D. Constitutional classical homeopathy

E. Check out if you have conditions that are conducive to canker sores, such as low phosphorus level in saliva, low amount of

stomach acid, and low thyroid activity.

F. Chinese medicine (acupuncture, acupressure, and tui na).

G. Check for food allergies, especially to gluten.

H. Check for a nutritional deficiency in iron, folate, vitamin B12, or zinc. If deficient, in addition to normal daily supplements, take

50 mg of zinc daily (don't if dissolving zinc lozenges directly on sore), take 1000 mg of vitamin C with bioflavonoids daily

(3xday for the first 3 days), take 1000 mg of vitamin B12 under the tongue, take 60 mg of iron daily (only if your are iron

deficient), take 800 mcg of folic acid daily, and take 400 IU of vitamin E daily.

I. Eliminate stress in your life or use relaxation therapies.

J. Sodium lauryl sulfate, a common ingredient in toothpaste, can induce apthous ulcers. Try a toothpaste that does not contain it.

SORES AT THE CORNER OF THE MOUTH (angular cheilosis)

This is usually caused from a deficiency of vitamin B (riboflavin), but it can also be caused by saliva collecting at the corners of the mouth.

For prevention or lessened frequency: Have a good diet that contains riboflavin, plus take a vitamin B-complex supplement. Good food sources of riboflavin are liver, kidney, heart, poultry, fish, green leafed vegetables, nuts, fruit, legumes, dairy products, eggs, and whole grains.

I have included the Url for addtional info and credit - Open Original Shared Link

HOPE THIS HELPS!!!!

jewi0008 Contributor
i get that too...sometimes the top of my mouth feels raw. then it disappears for a short time, and comes back...i wonder if it is a food allergy??

The mouth thing is the worst for me. Looking back, when I was little, I had that angular chelitis. The Dr.'s always told my parent's I had "hand, foot and mouth," but then I never had anything wrong with my hands or feet...only my mouth. I've sometimes gotten canker sores. What it is with me now, though, is something that is not even visible to the eye. It was a dentist who even brought it to my attention that I may be allergic to wheat/gluten and/or something else because they said that there is absolutely nothing in my mouth; no sores, nothing. It's the most chronically annoying thing. It all started right after I had my tonsils out. This will be year #3. They say that a major surgey can "initiate" celiac symptoms. I wonder if that was it. Anyone else have raw/dry/chronically annoying mouth/tongue problems?

wowzer Community Regular

Another interesting symptom I used to have. I made a BLT on a gluten free bagel. As I was eating it I realized it wasn't tearing up the roof of my mouth. Before going gluten free bread would tear up the roof of my mouth. My mother complains about this when she eats bread and also keeps getting rashes. Do you think she believes me about the gluten? Of course not. My little sister is a diagnosed celiac. We got this from somewhere right!!

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Scott Adams replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      IBS-D vs Celiac

    2. - Scott Adams replied to Amy Barnett's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Question

    3. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      how much gluten do I need to eat before blood tests?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,321
    • Most Online (within 30 mins)
      7,748

    James Minton
    Newest Member
    James Minton
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Scott Adams
      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
    • Scott Adams
      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
    • catnapt
      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
    • trents
      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in hospitals or institutional care and I'm guessing your physician would be willing to grant you a diagnosis of gluten sensitivity (NCGS) even if your celiac testing comes up negative. Also, you need to be aware that oats (even gluten free oats) is a common cross reactor in the celiac community. Oat protein (avenin) is similar to gluten. You might want to look at some other gluten free hot  breakfast cereal alternatives.
×
×
  • 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.