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cristiana

Canker Sore/mouth ulcer - worried

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Hello All

I've suffered from painful, white canker sores and ones that bleed since well before the time I was diagnosed.  They usually disappear in just a few days.

Over the last couple of months my tongue has felt odd - over tingly when it brushes past my teeth - and lo and behold about three weeks ago I noticed what looked like a white canker sore at the side of my tongue, where it probably brushes against my teeth.  It is ever so slightly bigger now, the size of a pimple, and it is now beginning to hurt, so fortunately I'm off to see my dentist today for a routine check up.  

I'm a worry-wort and of course imagine the worse.  The internet is littered with stories like mine that turned out badly - dentists missed the signs, doctors missed the signs, it was malignant.  

In a way I'm hoping that today my dentist will send me for a biopsy althought it's probably OTT.   I'm just wondering, though, if he'll say its just because I'm a coeliac or because I'm anemic, both of which are true, that I'll be told to wait it out.

In the meantime, it would be really helpful for me to know if there is anyone out there who has had a similar problem - and the outcome.

Thanks!

 

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Hi Cristiana!

Those hurt...I'm so sorry that you're suffering with one.  I haven't had one in quite some time, but I used to use warm saltwater rinses to help.  I definitely think after 3 weeks it's time to have it looked at.  I hope you get some answers!

Hugs!

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Hi Icelandgirl

Thanks so much for your concern and that advice.  I haven't tried that yet - good idea.  I saw the dentist.  Apparently it looks as if it might be healing but I'm to come back in a couple of weeks if it gets worse or doesn't go.    

Oh... the waiting game again.  It never ends!

 

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While I sit here playing this awful wait and see game, is there anyone out there who is reading this who can thrown any light on whether coeliac disease produces canker sores/ulcers that take much longer to budge?  Any similar experiences?  I am anemic too ... which I guess doesn't help....

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I am sorry that you are so worried!  When was the last time you checked your antibodies?  This test would rule out celiac disease as the culprit.  

 

 

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Hi Cyclinglady

That's a very good point.  Unfortunately, for reasons I'm not aware of, this test has never been offered to me since my initial diagnosis.   Although my IGA (is that what it is) was over 100, they seemed far more worried about my liver enzyme tests which revealed I had elevated gamma globulins.  Since then I'm very grateful to say I've had six monthly reviews and all my liver enzyme test results are perfect.  

That said, I did get this ulcer just after the time we went away and there may have been CC along the line. I'm also a terrible tongue biter (I often wake up with my tongue clenched in my teeth) so poor tongue has every right to protest, I guess!  I'm currently going through a very stressful period with a project deadline and haven't been sleeping well for several weeks.  I guess it could be that.

I just wish there was a pill that could remove worry.  I really try not to but feel quite paralyzed by it all.  I always seem to be in the waiting room with this on the door: 'Dr O Deer's Surgery' - in other words, 'Oh dear.... I don't like the look of that... we'd better do some more tests'.   I know lots of people feel like me on this site, though!

I'll suggest your idea when I see my doctor next week.  Thank you.

xx

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Hi Cristiana!

I'm so sorry that you are worried.  ((((Hugs)))).  

Your Dr should be checking your antibodies yearly.  Here is some information on follow up testing that should happen.

https://celiac.org/celiac-disease/understanding-celiac-disease-2/treating-celiac-disease/

Do ask for the antibody testing to be done at your visit.  Have you tried the warm saltwater rinse?  I do think doing that a few times a day helps.  Please try not to worry...easier said than done, I know.

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Hi Icey

I've been going down the medicated lozenge route.  I need to try this more traditional cure - it might be better.

I don't know why but I've absolutely convinced myself this is bad news.  I've never had a white ulcer last so long. It isn't exactly painful and it isn't open - it looks like there is a scab on it. It's probably only 1-2 mms across.  What a hypchondriac.  But it hasn't changed in over three weeks - I shouldn't google but I have and I'm in a right state because so many people started off with this seemingly innocuous symptom and so many doctors told them it was nothing.  Months later they are having major surgery and chemo.

I 'm going to see my doctor on Monday and I'm hoping she'll send me off for a biopsy - I can't carry on like this, wondering.

I'm so grateful for your input, icelandgirl and cyclinglady, I feel very alone this time and it's great to hear from someone while I wait.

****

Edit

I've just reread this and it seems a total overreaction.  I'm sorry everyone  - I know there are people out there with much more going on.

 

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On 5/18/2017 at 9:13 AM, cristiana said:

 

That said, I did get this ulcer just after the time we went away and there may have been CC along the line. I'm also a terrible tongue biter (I often wake up with my tongue clenched in my teeth) so poor tongue has every right to protest, I guess!  I'm currently going through a very stressful period with a project deadline and haven't been sleeping well for several weeks.  I guess it could be that.

I just wish there was a pill that could remove worry.  I really try not to but feel quite paralyzed by it all.  I always seem to be in the waiting room with this on the door: 'Dr O Deer's Surgery' - in other words, 'Oh dear.... I don't like the look of that... we'd better do some more tests'.   I know lots of people feel like me on this site, though!

I'll suggest your idea when I see my doctor next week.  Thank you.

xx

Hi, Cristiana!  

Sorry to hear you're having a problem.  I understand how worrisome mouth sores can be.  I've had a few myself.  

I suspect the sore is tied to getting cross contaminated on your trip.  

Celiac Disease causes malabsorption which in turn causes malnutrition.  Your recent CC may have affected your body's ability to absorb nutrients and vitamins.  The B complex vitamins are the most likely to be  depleted, as well as vitamin C, because they are water soluble and not stored long in the body.  Under stress, like illness or work deadlines, they are used up quickly, and if not replenished, subtle vitamin deficiency symptoms may appear.  

http://www.naturallivingideas.com/vitamin-c-deficiency/

http://www.gq.com/story/5-weird-signs-youre-vitamin-deficient

Deficiencies of some of the B vitamins and vitamin C may manifest as mouth sores or changes in the tongue.

 Bruxism, grinding or clenching teeth may be due to deficiencies of the minerals magnesium and calcium, and some of the B complex vitamins. 

Insomnia may often be helped by tryptophan, an amino acid, that the body uses to make a B vitamin, niacin.

The complex of B vitamins work together, so they should be taken together.   

https://www.ncbi.nlm.nih.gov/pubmed/26828517

Anemia is often helped with iron and vitamin B 12.  Vitamin C enhances iron absorption.  

And vitamin D helps tremendously with healing, depression, and overall body function.  D 3 is better absorbed and utilised by the body than synthetic D 2.  Vitamin D needs calcium to work properly and help keep your bones strong.

You may want to talk to your doctor or nutritionist about possible subclinical vitamin deficiencies.  

I had a horrible experience with malnutrition. My doctors missed the cause and simply treated the symptoms (which made me more ill).   Please don't discount the importance of vitamin supplementation while your body is healing on the gluten free diet and can't absorb enough on its own.

Hope this helps us all on our journey.  

Kitty

 

 

 

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On 5/22/2017 at 2:07 AM, knitty kitty said:

 

Hi, Cristiana!  

Sorry to hear you're having a problem.  I understand how worrisome mouth sores can be.  I've had a few myself.  

I suspect the sore is tied to getting cross contaminated on your trip.  

Celiac Disease causes malabsorption which in turn causes malnutrition.  Your recent CC may have affected your body's ability to absorb nutrients and vitamins.  The B complex vitamins are the most likely to be  depleted, as well as vitamin C, because they are water soluble and not stored long in the body.  Under stress, like illness or work deadlines, they are used up quickly, and if not replenished, subtle vitamin deficiency symptoms may appear.  

http://www.naturallivingideas.com/vitamin-c-deficiency/

http://www.gq.com/story/5-weird-signs-youre-vitamin-deficient

Deficiencies of some of the B vitamins and vitamin C may manifest as mouth sores or changes in the tongue.

 Bruxism, grinding or clenching teeth may be due to deficiencies of the minerals magnesium and calcium, and some of the B complex vitamins. 

Insomnia may often be helped by tryptophan, an amino acid, that the body uses to make a B vitamin, niacin.

The complex of B vitamins work together, so they should be taken together.   

https://www.ncbi.nlm.nih.gov/pubmed/26828517

Anemia is often helped with iron and vitamin B 12.  Vitamin C enhances iron absorption.  

And vitamin D helps tremendously with healing, depression, and overall body function.  D 3 is better absorbed and utilised by the body than synthetic D 2.  Vitamin D needs calcium to work properly and help keep your bones strong.

You may want to talk to your doctor or nutritionist about possible subclinical vitamin deficiencies.  

I had a horrible experience with malnutrition. My doctors missed the cause and simply treated the symptoms (which made me more ill).   Please don't discount the importance of vitamin supplementation while your body is healing on the gluten free diet and can't absorb enough on its own.

Hope this helps us all on our journey.  

Kitty

 

 

 

Kitty!  Thank you so much!  Reading these words is so reassuring....  I've had a horrid weekend googling 'white spot on tongue'  - so many horror stories about such a symptom.   I then read a few more articles which were more balanced and gave other things - such as teeth grinding and sharp teeth being a cause, which for my sanity's sake I'm trying to focus on!  Esp. as said sore is remaining stubbornly on my tongue!

I must thank you for the links, too.

Fascinating: In one it talks about 'Crazy muscle cramps in the form of stabbing pains in toes, calves, arches of feet, and backs of legs.'

The Deficiency: Magnesium, calcium, and potassium. "If it's happening frequently, it's a tip-off that you're lacking in these," 

That's absolutely incredible - I never knew that, as at night I am being woken by these pains in my toes and feet.  Thank you so much.  I did used to supplement these things and have stopped.  I will look into this and try to eat more healthily and supplement too in the short to medium term while I recover.  

I'm off to see my doctor tomorrow so having this information that you have sent in mind will be so helpful.  

My tongue is the weirdest colour - my dentist spotted it straight away and said, 'Wow, you are anemic'.  So if my ferritin is low - which I know it is  - I'm probably running other deficiencies too. 

Thank you so much again for taking the time to post.

Cristiana x

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Hi Cristiana,

first, I'll just say that i just dealt with a canker sore and I know how yucky they are. I've been getting them since I was a toddler. I have no idea if mine are related to my celiac or not. My grandma doesn't have celiac and she gets them too, so maybe it's also genetic.

i am positive that this last one was a fluke. I wasn't contaminated, but was traveling for the first time since having my baby a year ago (on business), and I was so stressed over that. This was the first time I'd traveled with celiac too. I noticed the little spot at the end of that week and it took over 10 days to heal. 

I tend to get mine on places where I bite my lip when I eat. Sometimes I'll bite myself and it heals right up but other times I get cankers. 

I dont know if yours is because of cc or just a fluke. I do know that many people get these and they don't all have celiac, and they can be caused by tons of different things. I also know that they can take up to 6 weeks to heal. 

My dentist just told me that a good rule in dentistry is to give anything 3 weeks. I think it's good you had it looked at and I'll be thinking of you as you wait for it to go. Usually these little things get worse before they're better. 

Faryn 

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On 5/23/2017 at 4:59 PM, cristiana said:

Kitty!  Thank you so much!  Reading these words is so reassuring....  I've had a horrid weekend googling 'white spot on tongue'  - so many horror stories about such a symptom.   I then read a few more articles which were more balanced and gave other things - such as teeth grinding and sharp teeth being a cause, which for my sanity's sake I'm trying to focus on!  Esp. as said sore is remaining stubbornly on my tongue!

I must thank you for the links, too.

Fascinating: In one it talks about 'Crazy muscle cramps in the form of stabbing pains in toes, calves, arches of feet, and backs of legs.'

The Deficiency: Magnesium, calcium, and potassium. "If it's happening frequently, it's a tip-off that you're lacking in these," 

That's absolutely incredible - I never knew that, as at night I am being woken by these pains in my toes and feet.  Thank you so much.  I did used to supplement these things and have stopped.  I will look into this and try to eat more healthily and supplement too in the short to medium term while I recover.  

I'm off to see my doctor tomorrow so having this information that you have sent in mind will be so helpful.  

My tongue is the weirdest colour - my dentist spotted it straight away and said, 'Wow, you are anemic'.  So if my ferritin is low - which I know it is  - I'm probably running other deficiencies too. 

Thank you so much again for taking the time to post.

Cristiana x

Cristina,

first ditto to everything Knitty Kitty said.

she does good research.

as to the Magnesium find you a Magnesium Citrate or Magnesium Gylcinate (non flushing form) and your body will thank you for it with restful dreams, energy and your charlie horses will vanish.

3/day plus bedtime will really perk up your energy levels.

here is a link to a thread ennis_tx began about magnesium I think it would help you to read it.

Ennis and I are the magnesium warriors on this board and Knitty Kitty and I both champion B-Vitamins.

Outside of chromium poly for my blood sugar no other minerals/vitamins have helped me more than B-vitamins and Magnesium as either magnesium Citrate and/or Magnesium Glycinate.

I say one vitamin (Niaicinamide) and one Mineral (magnesium) will help many of your GI problems and fatigue issues respectively you are experiencing with your Celiac diagnosis.

Also read this article on electrolyte homeostasis for the technical reason Magnesium alone can help your electrolyte imbalance(s).

http://www.mgwater.com/schroll.shtml

I had a friend with potassium deficiency and the doctor's couldn't help him -- but magnesium did.

Potassium and magnesium are twin deficiencies and they mistake one electrolyte fore the other.

quoting their conclusions'

"Conclusion

The importance of magnesium for the electrolyte homeostasis can be summarized now:

  • Magnesium deficiency is always followed by a disturbed electrolyte homeostasis. it causes a lot of deficiency symptoms according to its many-fold relations in the organism and should be considered in many diseases and clinical situations.
  • Sufficient magnesium supply is important for maintaining the concentration gradients and the electric potential at the Cell and stabilizes electrolyte homeostasis.
  • Magnesium is able to restore the ionic and electric imbalance by reactivating the sodium/potassium pump and by reducing the calcium overload.
  • Magnesium is indispensable for potassium substitution and for compensation of a refractory potassium deficiency."

Without enough magnesium we waste away and other electrolyte's become unbalanced.

Magnesium restores this balance (homeostasis) in a  healthy individual.

I hope this is helpful.

**** this is not medical advice only my experience with Magnesium and years of research on the importance of magnesium to the body.

It can be summed up this way as chlorophyll is to the plant so is Magnesium is to the animal.

dr. carolyn dean wrote a popular book about the topic call the "Magnesium Miracle" such is/was the improvement in her patients when she used Magnesium to treat them she considered its (magnesium) benefits almost miraculous and hence the name of her book.

I think  of it this way.  "you waste away" when you don't have enough Magnesium to make energy.

When low in Magnesium -- calcium takes over and hence the muscle cramps (calcium constricts the muscle and magnesium releases the muscle and when low in Magnesium) your body can no longer release the muscle and hence the charlie horse. Or your airways constrict (see my friends problem with sleep apnea below)

P.S. my friend also had sleep apnea as part of his low potassium diagnosis and taking magnesium Citrate helped with his chronic fatigue issues too!  I think many conditions are like this.  When you find the right nutrient/vitamins/minerals many complex conditions get better.

2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included.

posterboy by the grace of God,

 

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11 hours ago, Fbmb said:

Hi Cristiana,

first, I'll just say that i just dealt with a canker sore and I know how yucky they are. I've been getting them since I was a toddler. I have no idea if mine are related to my celiac or not. My grandma doesn't have celiac and she gets them too, so maybe it's also genetic.

i am positive that this last one was a fluke. I wasn't contaminated, but was traveling for the first time since having my baby a year ago (on business), and I was so stressed over that. This was the first time I'd traveled with celiac too. I noticed the little spot at the end of that week and it took over 10 days to heal. 

I tend to get mine on places where I bite my lip when I eat. Sometimes I'll bite myself and it heals right up but other times I get cankers. 

I dont know if yours is because of cc or just a fluke. I do know that many people get these and they don't all have celiac, and they can be caused by tons of different things. I also know that they can take up to 6 weeks to heal. 

My dentist just told me that a good rule in dentistry is to give anything 3 weeks. I think it's good you had it looked at and I'll be thinking of you as you wait for it to go. Usually these little things get worse before they're better. 

Faryn 

Fbmb,

Search for Lysine on the celiac.com forum.

Lysine can help canker sores.

this topic comes up often.  Lysine 500 to 1000mg in divided doses 2 to 3 times daily will help most canker sores on your tongue and mouth in two or three days.

Lysine can be taken prophyaltyically too (in advance of an outbreak) to keep it in check. You Use can take 500mg as a maintenance dose if they come back often.

I know  I used to keep a bottle of 500mg stocked and on hand. 

Taking Lysine always helped greatly and when I couldn't wait that long swilling some salt water (though painfull for a short period of time) greatly accelerates healing time.

But lysine in my experience usually knocked them in out  in less than 1/2 weeks time.

I hope this is helpful.

posterboy,

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1 hour ago, Posterboy said:

Fbmb,

Search for Lysine on the celiac.com forum.

Lysine can help canker sores.

this topic comes up often.  Lysine 500 to 1000mg in divided doses 2 to 3 times daily will help most canker sores on your tongue and mouth in two or three days.

Lysine can be taken prophyaltyically too (in advance of an outbreak) to keep it in check. You Use can take 500mg as a maintenance dose if they come back often.

I know  I used to keep a bottle of 500mg stocked and on hand. 

Taking Lysine always helped greatly and when I couldn't wait that long swilling some salt water (though painfull for a short period of time) greatly accelerates healing time.

But lysine in my experience usually knocked them in out  in less than 1/2 weeks time.

I hope this is helpful.

posterboy,

Never heard of it! Great to know!! :)

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Fbmb,

You are welcome.

I just try and pass on what worked for me on to others.

here is a quick search on celiac.com that explains it well.

I used to have them all the time and Lysine was a god send.

see the last poster in this thread it has to do with arginine/lysine balance and supplementing with lysine restores the ratio restoring balance again to the body.

Like in my previous post about Magnesium restoring the magnesium/calcium balance and why good calcium supplements are sold in a ration with magnesium but magnesium is sold alone with out Calcium because magnesium alone will restore the calcium/magnesium balance.

Soo too for the lysine/arginine balance needed by the body.

A common one you might recognize is zinc/copper (at least when you buy copper supplements) they are usually always sold together because they need  to be in balance/ratio to help them work properly together.  But you can buy zinc longenzes without copper.  That is why.

**** this is not medical advice but I hope it is helpful nonetheless.  For I have found if it helps you then it probably (will) help others the same way.

And why you here Ennis_tx talk about Magnesium alot (and I might too) if he didn't already and why I talk about Niacinamide ( the non-flushing form of niacin) alot because others don't.

for I found for myself at least that Prouskys' research is true and it worked for me.

http://www.yourhealthbase.com/database/niacin-treats-digestive-problems.htm

again I hope this is helpful.  And good luck on your continued journey.

posterboy by the grace of God,

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Hi posterboy and Fbmb

Thank you so much for taking the time to reply - and such comprehensive replies, too.

I will look into these things properly as canker sores continue to present (and I think I have other non-oral health issues which are probably caused by deficiencies).  A couple of sharp teeth are aggravating the situation too - I need to have them seen too.   I thought this was a problem but my consultant confirmed it.

The white sore turned out not to be an ulcer at all  - it was a tiny benign lump, which was removed during the biopsy.

What I learned from this which I'd like to share with anyone following this is if you do see a change in your mouth the three week rule is a really good thing to follow.  Get anything that has been around that long checked out.

Even here in the UK, where I often find healthcare more reactive than proactive than in the States, they encourage this rule and dentists and doctors will then refer you to a consultant if they are at all concerned within two weeks.  So from start to finish it is possible to have the change seen to within just over a month - even under the NHS.

I panicked when I was referred in such a hurry and imagined the worst.  But what I have learned is if this happens to you,  DON'T PANIC!  There is a very good chance that all will be well. But the reason they like to refer so quickly is that if it is cancerous early detection is so much better.  There are so many benign conditions that can cause changes - but how much better to be sure.

Thanks for this, too - posterboy.  2 Timothy 2: 7

My health is taking up too much time and I need to wisdom to know how I can improve things - if indeed I can.

 

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