mouth and tongue sores

[seameruok]

I have had celiac since 2001 and been gluten free, but about 2 years ago I developed a sore on the side of my tongue that lasted nearly a year and then went away, it has returned.  I have seen a physician when first developed it, they gave me a mouth rinse that numbed it but did not take it away.  I started taking B12 supplements and that seemed to make it go away, but then the dr checked my B12 about 9 months ago and said it was normal and that I should stop this medication, now I am wondering if it has returned because I am again deficient in the B12?  Anyone else have a similar story.  Please if you do share.  I am not sure if I absorb this vitamin adequetly? 

 

Thank you, Cathy

[Posterboy]

seameruok,

This is from a previous thread see below. Or just search for canker sores on celiac.com if this is not helpful but I think you will find it helpful.  good luck on your continued journey Cathy.

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

see this thread in it it spells out how I took Lysine to help my canker sores.

I hope this is helpful.

You might also have low stomach acid.  We get low in our amino acids when our stomach acid is not strong enough to digest proteins.

Open Original Shared Link

from the article

"Jonathan Wright, M.D., well-known and respected holistic physician, states that “Although research in this area is entirely inadequate, its been my clinical observation that calcium, magnesium, iron, zinc, copper, chromium, selenium, manganese, vanadium, molybdenum, cobalt, and many other micro-trace elements are not nearly as well-absorbed in those with poor stomach acid as they are in those whose acid levels are normal. When we test plasma amino acid levels for those with poor stomach function, we frequently find lower than usual levels of one or more of the eight essential amino acids: isoleucine, leucine, lysine, methionine, phenylalanine, threonine, tryptophan, and valine. Often there are functional insufficiencies of folic acid and/or vitamin B12.”

Again I hope this is  helpful but this not medical advice just things I have found that helped me.

And swilling salt water (be sure spit it out and don't swallow it) helps them go away quicker and taking Lysine can help keep them away after your current bout/round of mouth sores go away.

Once or twice a day of Lsyine will keep most ulcers at bay.  Remember it is an essential amino acid and we have to eat food with enough Lysine everyday or we get low in it since our body can't store most amino acids for more than 24 hours and why supplementing with Lysine helps.

Just trying to help those, God being my help, with the things that helped me with those still suffering.

Knowledge is power pass it one.

2 Corinthians 1: 3, 4

³ Blessed be God, even the Father of our Lord Jesus Christ, the Father of mercies, and the God of all comfort;

⁴ Who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble, by the comfort wherewith we ourselves are comforted of God.

posterboy,

[plumbago]

8 hours ago, seameruok said:

I have had celiac since 2001 and been gluten free, but about 2 years ago I developed a sore on the side of my tongue that lasted nearly a year and then went away, it has returned.  I have seen a physician when first developed it, they gave me a mouth rinse that numbed it but did not take it away.  I started taking B12 supplements and that seemed to make it go away, but then the dr checked my B12 about 9 months ago and said it was normal and that I should stop this medication, now I am wondering if it has returned because I am again deficient in the B12?  Anyone else have a similar story.  Please if you do share.  I am not sure if I absorb this vitamin adequetly? 

 

Thank you, Cathy

Hi Cathy,

Yes, I had aphthous ulcers in the summer of 2017. I wrote about it here:

https://www.celiac.com/forums/topic/118602-aphthous-ulcers/?tab=comments#comment-977823

I did numerous things - mostly I gave up sugar, drank only water, stopped using toothpaste with SLS in it, I used listerine, and took a bit more B12. They went away and haven't come back. My MD said it was probably viral (but who really knows for sure). I also had a dentist appt shortly after they went away, and I told both the assistant and the dentist about them, but they didn't say a word about what it could be, though I printed out my experience and gave it to them for my file.

The NY Times has published a story on what they are calling canker sores (short cut it, and read the comments!).

Open Original Shared Link

I'm happy to answer follow up questions, if you have any.

Plumbago

[Posterboy]

Cathy and Plumbago,

I see this a lot so (mouth sores and the lysine issue) so I wanted this thread response to show what the research says about it.

I was rushed yesterday and am a little tonight so I will try and be brief.

But I have noticed how one generation has ti learn what the other knew much like a parent passes to a child their knowledge.

I knew lysine worked form my experience and the experience of others but couldn't always prove it.

(and not that this will settle it for some) medically but there is good research that indicates it (Lysine) really can help.  And it is not just anecdotal (hearsay or undocumented results)/ information medically speaking but studied out.

Knitty Kitty is a better researcher than me --- at least she has a  lot of good links that I find useful.

as is the case of these nutrition links/research like a lot of good forgotten research these are 20 or 30 years old and they have to be brought too light again to the next generation.

see this link about using Lysine to keep mouth sore in remission.

entitled "Lysine prophylaxis in recurrent herpes simplex labialis: a double-blind, controlled crossover study."

Open Original Shared Link

and this link entitled  "Lysine as a prophylactic agent in the treatment of recurrent herpes simplex labialis."

Open Original Shared Link

both of these studies are 30+  years old and are lost on this generation of doctors and patients.

but even if you don't go back that far in time.

Newer research confirms these same results.

And this research was  harder to find because ironically newer and thus  more difficult to find on free access websites.

see this link

Open Original Shared Link

where they note the relationship of lysine in the (successful (my words)) treatment of mouth sores.

qouting

"Results: The number and the recurrence of the ulcers decreased significantly in (the) lysine group"

I hope this is helpful . . . it helps some to see the research in black and white so too speak where others more freely go on other people's experience.

Again I hope this is helpful.

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

Posterboy by the grace of God,

 

[knitty kitty]

I found this article helpful...

Open Original Shared Link

There are a few other B vitamins that if deficient can cause mouth sores.  

Open Original Shared Link

The eight B vitamins work together.  Supplementing just one doesn't always work because the other B vitamins are needed, too.  The B vitamins are water soluble and need to be replenished every day.  Any excess is excreted in urine.  

Open Original Shared Link

Even mineral deficiencies, like iron, caused by Celiac malabsorption can cause mouth sores.   

Posterboy is right about lysine helping, too. (Thanks, Posterboy)... And getting rid of my SLS containing toothpaste helped me, too, like Plumbago said.  

Hope this helps!

 

[Posterboy]

Plumbago et al,

(maybe a moderator can move Plumbago's response about Lysine from the "Tylenol thread")

Yeah the issue about the pregnancy is a great point.

I usually tell people that is  not medical advice (but sometimes get  in a hurry) and don't always qualify my statements.

Cathy listen to Plumbago (if you are pregnant) but I assume with anyone already pregnant they know to check with their doctor's already.

But Lysine is an essential amino acid --- we need to function properly and the risk is minimal for most people.

see this great thread about Lysine (if you are pregnant) and it's low risk.

Open Original Shared Link

I wanted to update a few things (now that I have a little more time).

Plumbago and Knitty Kitty you are spot on -- on the SLS.

see this thread entitled "The effect of sodium lauryl sulfate on recurrent aphthous ulcers: a clinical study"

Open Original Shared Link

My point in including the link on HSV-1 is/was to show it had been studied with favorable outcomes.

And most canker sores are from HSV-1 (putatively) believed to be the cause.

So the early research in the 80s attributed benefits to Lysine supplementation but we today are not aware of this still today.

and very recently (enough so the NYTimes) should of referenced it in my opinion.

but their conclusion was no there was no "definitive proof" yet the research says Lysine (at least one form of it) can and does treat mouth ulcers even when HSV-1 is known to be active in an individual. . . yet biologics are used instead of a very low risk amino acid for mouth sores.

Surely other's need to know about this.

now for a little housekeeping (figure of speech) because I didn't know this and I expect other's reading this thread didn't know this either.

see this thread from the american academy of dermatology.

Open Original Shared Link

again this is not medical advice so always check with your doctor (especially if you are pregnant) before changing your supplements.

but I wanted to point out as a learning point the difference in the different types of herpes simplex/ulcers.

because as I said I did  not know (and this might not be right either) but the best as I understand it.  Plumbago or others' if this is not true correct me.  The one who corrects me is my friend and what I am trying to be here by sharing.

the oral version found in the mouth is known as aphthous ulcers i.e canker sores.

the version found on lips and face is commonly known as fever blisters is know as Herpes simplex labialis ie on or about the mouth and face.

and if you go back and look at the 80s research I cited it is the labialis form (fever blisters) and they have known (well before) it was associated with HSV-1 to be able to be treated with Lysine supplementation.

The research on the 2010's was the aphthous ulceration form of HSV-1 (canker sores) form and why I cited it.

again from the american academy of dermatologists link provided again for easy reference.

Open Original Shared Link

Herpes simplex: Overview

Herpes simplex is a common viral infection. If you’ve ever had a cold sore or fever blister, you picked up the herpes simplex virus. Most cold sores are caused by herpes simplex virus type 1 (HSV-1). Other names for cold sores caused by HSV-1 are:

• Oral herpes.
• Mouth herpes.
• Herpes simplex labialis.

A closely related herpes simplex virus, HSV-2, causes most cases of genital herpes. But either HSV-1 or HSV-2 can cause a herpes sore on the face or genitals."

the trend to treat "cold sores' is to biologics like enbrel which I think is sad when oral supplementation of Lysine can keep not only the HSV-1 in check but also restore the Lysine/Arginine balance in our bodies.

Knowledge is power! Pass it on!

You can't do what you don't know.

for those doing the research for themselves know it some (often abbreviated) as Recurrent Aphthous Stomatitis (RAS) for canker sores.

so in summary (Cathy) definitely change to a sodium lauryl sulfate (SLS) free toothpaste it can help as Plumbago and Knitty Kitty point out but if that alone doesn't help I wouldn't hesitate to try some Lysine 2/day.  And remember Lysine can be taken ahead of (prophylaxlly) an outbreak to keep the Herpes outbreak in remission.

It always helped me (long before I ever received my celiac diagnosis) and now I don't need the Lysine because my body is now absorbing it's own Lysine.

see my story about low stomach acid misdiagnosed.

and (it is probably) too high in this thread if you remember I said you might be low in stomach acid.

quoting again.

 "You might also have low stomach acid.  We get low in our amino acids when our stomach acid is not strong enough to digest proteins.

Open Original Shared Link

from the article

"Jonathan Wright, M.D., well-known and respected holistic physician, states that “Although research in this area is entirely inadequate, its been my clinical observation that calcium, magnesium, iron, zinc, copper, chromium, selenium, manganese, vanadium, molybdenum, cobalt, and many other micro-trace elements are not nearly as well-absorbed in those with poor stomach acid as they are in those whose acid levels are normal. When we test plasma amino acid levels for those with poor stomach function, we frequently find lower than usual levels of one or more of the eight essential amino acids: isoleucine, leucine, lysine, methionine, phenylalanine, threonine, tryptophan, and valine. Often there are functional insufficiencies of folic acid and/or vitamin B12.”

It is me again people who have trouble with amino acids often are low in stomach acid because we can't digest proteins properly.

Cathy you can test this theory by having your doctor do a heidelberg test aka a gastric acid function test or possibly self treating with supplementing with betaineHCL to see if your digestion improves.

here is a case study about how people have used betaineHCL to treat stomach issues.

Open Original Shared Link

It is much simpler (than to read the whole paper) to look at their figure 1 referenced of patient timeline here for easy reference.

Open Original Shared Link

after 30 year (much like the lag in knowledge of Lysine for fever blisters) the patient's GI problems got much better after supplementation.

Again I hope this is helpful and it helps! You the way it did me!

Good luck on your continued journey,

Remember **** This is not medical advice and should not be considered such. Results may vary. Always consult your doctor before making any changes to your regimen.

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

Posterboy by the Grace of God,