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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Annoying Mouth Problems
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16 posts in this topic

Hey Everyone!

I am having annoying problems with mouth sores...what I would call a canker sore or an ulcer. I know this can be associated with Celiac disease (which I have)... To my point--- I am just curious to find out if you all get sores in different places in your mouths or do they tend to happen in just one part of your mouth, i.e., inside of lips, cheeks, or tongue. Mine always tend to be on the sides on tongue and I am wondering if this is weird or not?

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Hey Everyone!

I am having annoying problems with mouth sores...what I would call a canker sore or an ulcer. I know this can be associated with Celiac disease (which I have)... To my point--- I am just curious to find out if you all get sores in different places in your mouths or do they tend to happen in just one part of your mouth, i.e., inside of lips, cheeks, or tongue. Mine always tend to be on the sides on tongue and I am wondering if this is weird or not?

I don't get them as often now but would mostly get them on my tongue and around the sides of my tongue which as you know made it very painful to eat. Before my celiac diagnosis I got them all the time, now just once in awhile. Very acidic stuff like Franks hot sauce, pineapples, limes ect will sometimes cause them for me as well.

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Hey Everyone!

I am having annoying problems with mouth sores...what I would call a canker sore or an ulcer. I know this can be associated with Celiac disease (which I have)... To my point--- I am just curious to find out if you all get sores in different places in your mouths or do they tend to happen in just one part of your mouth, i.e., inside of lips, cheeks, or tongue. Mine always tend to be on the sides on tongue and I am wondering if this is weird or not?

Nope...not weird at all! I got them on the sides of my mouth and on the sides of my tongue also. My dentist actually freaked out and thought I had mouth cancer because one of them would not heal. That was right before I was diagnosed and when I went gluten-free, all sores disappeared, never to return. The dentist, along with myself, got quite an education and I told her not to assume that a mouth sore=cancer and scare the crap out of people. Now, when she see's other patients with the problems I had, she talks to them about Celiac Disease first.

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Hey Everyone!

I am having annoying problems with mouth sores...what I would call a canker sore or an ulcer. I know this can be associated with Celiac disease (which I have)... To my point--- I am just curious to find out if you all get sores in different places in your mouths or do they tend to happen in just one part of your mouth, i.e., inside of lips, cheeks, or tongue. Mine always tend to be on the sides on tongue and I am wondering if this is weird or not?

I used to get them at least once a month but haven't had any since I have been gluten free...so 20 years.

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I used to get them often--mostly on the inside of my cheeks. Now, if I get into cross contamination, they reoccur.

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I got them most often on the inside of my lower lip, or the inside of my cheeks where my teeth can catch. They went away after I was gluten-free for a while. It's so weird to bite the inside of my mouth and have it heal normally! If I eat gluten I'll often get one again.

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Thanks for all the comments everyone! I was under the impression most people got them on the inside of their lower lip. I am glad to hear I'm not the only one with tongue problems. I used to get them more often than I do now, but I have a huge one on the side of my tongue now and it's really bothering me. I get them whenever I bite myself as well and sometimes it seems like they pop up for no reason, those are always on the sides of my tongue. Not fun.

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Mine are always on the sides of the tongue, right where my tongue bumps up against my molars. They're pretty much gone after 7 months gluten-free but flare up a bit if I'm CCed.

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I've gotten them regularly since I was five. All over my tongue, my cheeks, inside my lips and sometimes down my throat. Very painful. I would miss school because of it.

I found that eliminating caffeine and artificial sweeteners reduced my outbreaks but I still get them fairly often- about once or twice a month. Right now my cheeks are a mess and I have a couple on the back of my tongue. My husband thinks I'm addicted to Chloraseptic (is that gluten free? I should check.)

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Get your dentist to give you liquid dexamethasone. It works wonders! If I swab it a few times a day, mine will generally be gone in 1-2 days.

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yep, I get them too, along the side of my tongue...soooo painful. Got one now after getting cc'd...argh not fun. Thought it was weird but clearly its not. Thanks for helping me feel a little more normal :)

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Mine seemed to pop up pretty much anywhere, sides of my tongue, side of my mouth where there is a crease and behind my lips or on my gums over my teeth.

My ulcers always seemed to come in clusters, but I never gave it much thought as the doctors and dentists were never interested. Hadn't had one for quite a while - but after my first month of being gluten free I ate some gluten crackers this week - and voila I now have 2 beauties behind my lower lip!!

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My daughter has a major canker sore problem. Her physician finally sent her to Mayo Clinic for evaluation. They diagnosed her as having an iron absorbtion problem. As long as she can keep her iron levels up (difficult to do) she is free of canker sores. But I wonder if she actually has a gluten problem which is interferring with her iron absorbtion.

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I have had a lifelong problem with mouth sores. I even get them on my throat and soft palate. Last year, I read an article stating that over 90% of sufferers no longer had mouth sores after taking 1000mcg B12 sublingually. I started taking it and rarely ever have a mouth sore now.

I think mine were/are related to B12 deficiency most likely celiac related. I have had other neuro symptoms that have improved as well.

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I had really bad mouth sores before going wheat-free. I'd have 5-7 at a time, usually on the roof of my mouth, or on the same side of my tongue. When it got really bad, I'd even find a painful few in my nostrils, and even more painful ones, well, on (okay inside) my butt (hole). D:

Two days after going wheat free, I stopped getting new sores, and within a week all the sores healed completely.

I think its pretty common to get sores in the same area. Not sure why. I'd suggest tea tree oil or salt water to treat them ^^

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My 11 year old son gets these mouth sores an awful lot, and I just put him on the Celiac diet last week...suspecting he got his Mom/Grandpa's genetics, and has it too. I chose to not "get him officially tested", as false negatives are just too frequent, and why put the kid through anything potentially traumatic and unnecessary?!

My little man has a severe heart defect and has had 2 open heart surgeries. He continues to struggle with heart problems and has to go through a sedated cardiac MRI this Thursday at Stanford hospital in Palo Alto, CA, to plan the timing of his next surgery to replace a cow valve that was placed in 2006 and is now non-functioning. So you see why putting him through even a simple blood draw and/or an upper GI test is not high on my list of things to do!

Anyway, I had no idea that his canker sores were Celiac related. This is just another symptom that makes me feel more comfortable in my decision to just put him on the diet, without any official testing. So another thank you is in order here. Thanks! :0)

He is doing great btw, and I even managed to get my ex-husband (we share 50/50 custody of our kids) on board with the diet for him. He went out yesterday and bought him some gluten-free food at the local grocery store that has an awesome health food/gluten-free section. I am supplying Dad with homemade bread to give to him, since I bake it 4 loaves at a time anyway and it's my son's favorite. His D and bad gas is slowly going away, and he feels like a million bucks! Yay!

Again I'll say it, gluten is terrible stuff! (At least for many members of my family!)

Hey Everyone!

I am having annoying problems with mouth sores...what I would call a canker sore or an ulcer. I know this can be associated with Celiac disease (which I have)... To my point--- I am just curious to find out if you all get sores in different places in your mouths or do they tend to happen in just one part of your mouth, i.e., inside of lips, cheeks, or tongue. Mine always tend to be on the sides on tongue and I am wondering if this is weird or not?

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    • How do you know what's causing what?
      I am in same boat, yesterday my stomach was churning and bloated and I don't know what the cause was.  How about keeping a food diary? Just note what you ate and how you feel. A few days may be sufficient to discern a pattern, either some rogue product or a previously unknown intolerance. I have read that after gluten is removed further intolerances which were hidden can become apparent.  I don't know whether you could cut yourself some slack from a full vegan approach whilst your body heals? If not, maybe you could substitute say milk with coconut milk or similar to give your body a break whilst keeping calcium levels high? If you join coeliac uk you can check your sauces etc on their gluten-free database, they'll also send you a book which became my bible until I got a hang of which brands I could eat safely. Finally, have you excluded cross contamination from pots and pans, toasters, shared condiments etc?  Good luck!
    • Blood results - odd
      My results were similar – Low ferritin but normal B12. Although my ferritin levels were low, my Iron serum levels were normal. So might be worth getting your iron levels checked out to see if you have any deficiency in Iron. Also I was deficient in Vitamin D, which is perhaps more of a problem in England rather than the US - Our milk isn’t supplemented with vit D and we obviously have less sunshine.
    • How do you know what's causing what?
      Hi Kam, If you are going to continue the celiac testing with an endoscopy, you need to keep eating gluten until it's done. It can be hard for vegetarians to keep their vitamin D levels up.   This Vitamin D  Council link has some good info on ways to boost your levels. https://www.vitamindcouncil.org/about-vitamin-d/
    • Blood results - odd
      Your ferritin was very low!  My result was a 2 when I was diagnosed.    I hard a hard time breathing and the fatigue was awful due to low hemoglobin levels.  But after going gluten free and taking iron for a few months, I quickly recovered from iron-deficiency anemia.  I still have hemologobin levels that are slightly below range due to Thalassemia which is genetic and my body has adjusted for it.   My B12 and folate levels are  super high.  My B12 is over 2000!  Yeah, I googled and ruled out cancers, etc.  Looks like some of us do not process man-made B12 often included in supplements.  I opted for natural sources of B-12 and folate and my levels have come down a bit.   Let us know your results.  Read the Newbie 101 section under "Coping" within this forum for tips.   Be patient.  It can take months, to years to feel good.  But it will happen!    
    • How do you know what's causing what?
      Welcome to the forum!   Well.....in theory you should be able to heal within a few months (grow new villi, etc.).  The reality is that it takes so much longer -- like a year or two (I kid you not!)  Why?  celiac disease can damage more than just the gut.  Depending on what was damaged (nerves, bones, etc) can impact healing time.  The gluten-free diet has a very steep learning curve.  It's not just giving up gluten.  It's avoiding cross contamination.  Becoming an expert in reading labels.  Learning to avoid foods processed on shared lines in a facility.  Then there are intolerances that most celiacs develop.  The most common ones is lactose.  Why?  The villi tips release the enzymes to digest lactose.  No villi tips?  Then you can not digest lactose.  Often this is temporary, but if you are one of the many adults in this world, you might already be lactose intolerant or might become so as you age.   Other intolerances that members often report include corn or soy.   Some celiacs react to oats, even gluten free.  So avoid oats for six months.  So, try cutting out dairy for a few days and see how you feel.  Then add in those items that have the least lactose:  hard cheese, butter, yogurt and see how you feel.   Avoid eating out for six months until you have seen some improvement.   Read our Newbie 101 thread under coping for more ideas!  Hope you feel better soon.   
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