Burning Mouth Syndrome? Opinions please.

[Sunny]

Hello everyone, I am in need of some vegan opinions please. Approximately 2-3 years ago I began having pain on my gums and my tongue. To make a very long, boring story shorter I will say that after hospital and dentist appts I have been diagnosed with oral Lichen Planus which is, according to the consultant, not the cause of the pain in the center and end of my tongue. He does not know what it is. The lichen planus can be unpleasant with a couple sore and sensitive areas but is nothing compared to the pain with what I am wondering/guessing is burning mouth syndrome.

It affects one area of my tongue, always the same place- the front center and often the tip. It feels as though it has been scalded badly and is like that every day, all the time. Nothing helps and I feel like I have tried everything. I used to use "iglu" with lidocaine just on that one area but they have stopped doing it saying they can longer get the ingredients (?) but are still doing the one without lidocaine which I use daily though it is not nearly as helpful as the one with lidocaine. I don't use it every moment of the day but will use it at least a couple times each day because it feels like it offers some protection to the extremely sensitive area.
I have had some blood tests done and they all seem to be in good, including my b12. I am aware though that the blood test for b12 is not dependable as it does not take into account the body's store of b12 I believe? I take a good b12 supplement (at least I think it is).
The pain from this is severe and it seems to have got worse recently and remained so. I am struggling to sleep or think of other things sometimes. Could this be my diet? Am I missing something crucial? There are 2 other options I am going to look into that could perhaps be causing it such as menopausal issues and also, any metal/amalgam in my mouth though the consultant was quick to dismiss that.

I am quite desperate.

 

[Emma JC]

welcome to the forum and so sorry to hear about your issue

have you had a blood test for general inflammation? I have no idea what could be causing your pain and yet I do know that inflammation is the cause for pretty much all diseases/issues in our bodies. If you do have a high level then you may wish to consider cutting back on inflammatory foods. Being vegan you obviously don't eat animal fats however oils (of all types) do increase our levels of inflammation as well as processed foods, sodas (pop), excess sugars etc

you may also wish to use Cronometer for a short time to see if you are missing anything critical - @Lou is our resident expert on Cronometer and I am sure he would be willing to help you if you asked

I hope you are able to find a way to alleviate it soon!

Emma JC
Find your vegan soulmate or just a friend. www.spiritualmatchmaking.com

 

[Sunny]

welcome to the forum and so sorry to hear about your issue

have you had a blood test for general inflammation? I have no idea what could be causing your pain and yet I do know that inflammation is the cause for pretty much all diseases/issues in our bodies. If you do have a high level then you may wish to consider cutting back on inflammatory foods. Being vegan you obviously don't eat animal fats however oils (of all types) do increase our levels of inflammation as well as processed foods, sodas (pop), excess sugars etc

you may also wish to use Cronometer for a short time to see if you are missing anything critical - @Lou is our resident expert on Cronometer and I am sure he would be willing to help you if you asked

I hope you are able to find a way to alleviate it soon!

Emma JC
Find your vegan soulmate or just a friend. www.spiritualmatchmaking.com

Thank you for your kind reply and suggestions. I had a crp test done not long ago and am struggling to find out the exact result. The doctor told me it was very mildy elevated and nothing to worry about. I do use some oils- I use organic olive oil and organic rapeseed for cooking. I try to keep it to a minimum. I also drink diet Coke, not a lot but some, most days. I didn't have any for a few days to see if it made any difference to the problem. It didn't however it may be that I just didn't give it long enough. I am going to look into the inflammatory foods a bit more. I appreciate that suggestion.

I use Cronometer and love it, though when I am not using the paid version I don't see all that I would like too. I am using the free version though.

 

[Lou]

If you asked me I would have to recommend going to see a doctor. if the first guys were of little to no help go to a different one.

Mouth stuff is sort of tricky. Most regular physicians aren't trained in mouth stuff. And dentists who are don't have a deep background on diseases. Maybe and ENT would be your best bet.

You mentioned. Burning Mouth Syndrome. Did a doctor make that diagnosis or is that one you made yourself? I just looked it up on the Internets and it does seem to be what you have. And although the info on it is limited and somewhat vague it seems that some tests can possilbey help pinpoint the cause and maybe a solution. This is something you and your doctors should explore.

. Could this be my diet? Am I missing something crucial?

It actually could be from a deficiency. and food allergies or food sensitivities might be something to check out. BTW, you don't have to be born with a food allergy or sensitivity - you can develop one at any time.

There are 2 other options I am going to look into that could perhaps be causing it such as menopausal issues and also, any metal/amalgam in my mouth though the consultant was quick to dismiss that.

Maybe he was too quick to dismiss that.

From the Mayo Clinic

• Allergy tests. Your doctor may suggest allergy testing to see if you may be allergic to certain foods, additives or even substances in dental work.

(The emphasis is mine).

Burning mouth syndrome - Diagnosis and treatment - Mayo Clinic

--------------
When I had mouth and throat issues I was prescribed a mouth wash with lidocaine but I could only take it every 4 hours. in between I found a couple of Over The Counter medications that help a lot.

Cloraseptic Throat Numbing spray and Cepacol extra strength lozenges.

 

[Sunny]

If you asked me I would have to recommend going to see a doctor. if the first guys were of little to no help go to a different one.

Mouth stuff is sort of tricky. Most regular physicians aren't trained in mouth stuff. And dentists who are don't have a deep background on diseases. Maybe and ENT would be your best bet.

You mentioned. Burning Mouth Syndrome. Did a doctor make that diagnosis or is that one you made yourself? I just looked it up on the Internets and it does seem to be what you have. And although the info on it is limited and somewhat vague it seems that some tests can possilbey help pinpoint the cause and maybe a solution. This is something you and your doctors should explore.



It actually could be from a deficiency. and food allergies or food sensitivities might be something to check out. BTW, you don't have to be born with a food allergy or sensitivity - you can develop one at any time.



Maybe he was too quick to dismiss that.

From the Mayo Clinic

• Allergy tests. Your doctor may suggest allergy testing to see if you may be allergic to certain foods, additives or even substances in dental work.

(The emphasis is mine).

Burning mouth syndrome - Diagnosis and treatment - Mayo Clinic

--------------
When I had mouth and throat issues I was prescribed a mouth wash with lidocaine but I could only take it every 4 hours. in between I found a couple of Over The Counter medications that help a lot.

Cloraseptic Throat Numbing spray and Cepacol extra strength lozenges.

Thank you for your reply. You are quite right about physicians not being trained in mouth stuff and dentists not having the knowledge of diseases. I agree. I am calling the GP again and asking for further help though the last time I did she seemed to suggest everything was done that could be- which in my opinion was not at all good enough.
I was at a dental hospital in London for another, unrelated problem and they were very good. While there I spoke to the dentist about this problem and he said if my dentist would refer me again they would be happy to see me. I put it off for awhile for financial reasons but I am going to ask to be referred again. I suspect that he may think it could be something to do with the "metal" in my mouth. There is not a lot but some, which could potentially cause the problem. Doctors here do not test for allergies no matter how you fight for it unless you have had anaphylaxis or something along those line.

 

[Lou]

Doctors here do not test for allergies no matter how you fight for it unless you have had anaphylaxis or something along those line.

That's too bad. So many health conditions can have their root with a food allergy or sensitivity.
Although in the defense of the NHS, this is still not the most likely cause of most problems. but the tests are simple quick and easy - so Why The **** not.

Over here we actually have some home tests that are pretty reliable. And inexpensive.

I believe the "old fashioned"tests were all based on a skin *****/template thing. but the new ones are DNA based. you just send a hair sample.

But yeah the referral to the dental hospital might be a very good step. Meanwhile try the sprays or lozenges I recommended.

 

[silva]

Of course you need to rule out B12 deficiency with a methylmalonic acid level test, as well as check for the MMFTH genetic trait which could cause you to need methylated versions of B12 and/or folate

The New Vitamin B12 Deficiency Test

How were your D levels?

 

[Sunny]

There are a couple reasons they don't do the allergy testing, one being added costs for the NHS.

 

[Sunny]

Of course you need to rule out B12 deficiency with a methylmalonic acid level test, as well as check for the MMFTH genetic trait which could cause you to need methylated versions of B12 and/or folate

The New Vitamin B12 Deficiency Test

How were your D levels?

I have previously been unaware of these tests. I wonder if the methylmalonic acid level test is something they will do on the NHS.... I seem to have to push and push to get any tests done other than basics but I am definitely going to try to get that done. Is the genetic trait test you speak of the same as the DNA-based test mentioned above by Lou? (done by hair sample?)

D levels were last checked about a year ago and they were within range. It has become a constant battle to even get to see a doctor let alone get more than the basic full blood count. Thank you so much for these suggestions. They really help.

 

[silva]

My first suggestion is reduce your food choices to a few choices in each catagory following this Daily Dozen list. Dr Greger has made this list of categories and serving that will provides a full days nutrition. Make your choices from foods you know you're find with, as well as the least likely foods to cause reactions you may not be aware of. Like maybe avoid nightshades for a time? Maybe give up gluten for a bit? Try and stick with organics? Keep a diary. While this doesn't address any specific issue, it is certainly the cheapest way to see if there is anything in your diet that may be contributing to your problem. At very least it won't cost you much and you may discover something! I can say for certain when I stuck to this way of eatng I did feel great, and eliminated many allergies and asmtha, as well as any signs of arthritis. I am a bit of a food addict and struggle to keep it up regardless

Daily Dozen Challenge | NutritionFacts.org

Welcome to the Daily Dozen Challenge! The Daily Dozen Challenge was created to help more people discover how easy it is to fit some of the healthiest of

nutritionfacts.org

Dr. Michael Greger's Daily Dozen | NutritionFacts.org

 

[Sunny]

Great links (very helpful indeed!) and advice- thanks so much.

 

[Emma JC]

I don't know where in the UK that you live however I googled " uk naturopathic doctor allergy testing " and quite a few options popped up and as naturopaths do these tests it may be less expensive, for you, than through the medical route.

Emma JC
Find your vegan soulmate or just a friend. www.spiritualmatchmaking.com

 

[Sunny]

I don't know where in the UK that you live however I googled " uk naturopathic doctor allergy testing " and quite a few options popped up and as naturopaths do these tests it may be less expensive, for you, than through the medical route.

Emma JC
Find your vegan soulmate or just a friend. www.spiritualmatchmaking.com

We don't pay for medical here through the NHS but as they wouldn't offer allergy testing to me, I would have to pay for a private doctor or, as you suggest, a naturopath. I will look into that and see what kind of cost is involved. Thank you!

 

[bEt]

I think I've heard that zinc can sometimes be related to immune stuff. I've started taking half or quarter of a 50mg zinc in the evenings with food, and it seems to have helped to chase away an almost-sore-throat and sort-of-swollen lymph nodes on-and-off type thing I was having for a while.
I also believe I read somewhere that omega 3's help our bodies use the B vitamins. And they are sometimes recommended to reduce inflammation. There is ALA in chia and in walnut. There are some vegan algae-oil DHA and EPA supplements. Cut wakame has some EPA, too.
The suggestions to look for food allergies could even be expanded to any supplements too. I know someone who had a bad reaction to an herbal supplement.

 

[LoreD]

Thank you for your reply. You are quite right about physicians not being trained in mouth stuff and dentists not having the knowledge of diseases. I agree. I am calling the GP again and asking for further help though the last time I did she seemed to suggest everything was done that could be- which in my opinion was not at all good enough.
I was at a dental hospital in London for another, unrelated problem and they were very good. While there I spoke to the dentist about this problem and he said if my dentist would refer me again they would be happy to see me. I put it off for awhile for financial reasons but I am going to ask to be referred again. I suspect that he may think it could be something to do with the "metal" in my mouth. There is not a lot but some, which could potentially cause the problem. Doctors here do not test for allergies no matter how you fight for it unless you have had anaphylaxis or something along those line.

That is a good idea. The recommendation is to see a dentist first:

Burning Mouth Syndrome | National Institute of Dental and Craniofacial Research

Talk to your dentist first. About one-third of people with BMS have an oral habit such as tooth grinding or jaw clenching that can lead to BMS. Dentists are familiar with oral habits and can help you manage them.

Your dentist may refer you to a specialist in oral surgery, oral medicine, or oral pathology who can assist with diagnosing or treating BMS. Ear, nose, and throat specialists can also treat this condition.

Treatment​

Your dentist may help you manage oral habits that contribute to BMS, such as tooth grinding or jaw clenching.

Your dentist or doctor may prescribe medication that can help control pain and relieve dry mouth. Sometimes a small dose of topical or systemic clonazepam might help with BMS pain.

Because BMS is a complex pain disorder, the treatment that works for one person may not work for another.

Symptoms of secondary BMS may go away when the underlying medical condition, such as diabetes or yeast infection, is treated. If a drug is causing the problem, a doctor may switch you to a different medicine.

 

[Sunny]

I think I've heard that zinc can sometimes be related to immune stuff. I've started taking half of a 50mg zinc in the evenings with food, and it seems to have helped to chase away an almost-sore-throat and sort-of-swollen lymph nodes on-and-off type thing I was having for a while.
I also believe I read somewhere that omega 3's help our bodies use the B vitamins. And they are sometimes recommended to reduce inflammation. There is ALA in chia and in walnut. There are some vegan algae-oil DHA and EPA supplements. Cut wakame has some EPA, too.
The suggestions to look for food allergies could even be expanded to any supplements too. I know someone who had a bad reaction to an herbal supplement.

Thank you for your reply. A few years ago I was just on the cusp of being low in Zinc. I made sure to include more in my diet but also began taking a supplement. I am reasonably within the normal range. Because of this tongue problem, I began looking into extra supplements in case I was missing something in my diet. I started taking Testa Omega 3 DHA and EPA and Together Health Vegan Multi but this all was after the problem started really. I have wondered if it has something to do with the med I take for hypothyroidism but I can't really stop taking that to see.

 

[bEt]

Oh, hypothyroid is not fun. My mom had her thyroid completely removed, and she has never been happy with the synthetic replacements. It is very tricky to work with endocrine stuff like that; it seems like it is still kind of a mystery in some ways even for the experts. Did this start at the same time that you started that medication? Do you have any reason to suspect there may be a connection? If so, it may be possible to talk to a GP about alternatives to try? Liothyronine, cytomel, triostat? I don't remember what my mom's taking, but she recently switched formulas (pill manufacturer) after arguing with her doctors for a long time about it, and she is happier with the new one. I think she may be paying extra for it though

may be related?

Burning mouth syndrome and burning mouth in hypothyroidism: proposal for a diagnostic and therapeutic protocol - PubMed

Burning mouth syndrome (BMS): evaluation of thyroid and taste - PubMed

Possibly the whole thyroid thing may be bigger than it first seemed? You have lots of company if so. My mom has told me more and more people are being diagnosed with thyroid problems, and at younger ages too.

 

[Sunny]

That is a good idea. The recommendation is to see a dentist first:

Burning Mouth Syndrome | National Institute of Dental and Craniofacial Research

Talk to your dentist first. About one-third of people with BMS have an oral habit such as tooth grinding or jaw clenching that can lead to BMS. Dentists are familiar with oral habits and can help you manage them.

Your dentist may refer you to a specialist in oral surgery, oral medicine, or oral pathology who can assist with diagnosing or treating BMS. Ear, nose, and throat specialists can also treat this condition.

Treatment​

Your dentist may help you manage oral habits that contribute to BMS, such as tooth grinding or jaw clenching.

Your dentist or doctor may prescribe medication that can help control pain and relieve dry mouth. Sometimes a small dose of topical or systemic clonazepam might help with BMS pain.

Because BMS is a complex pain disorder, the treatment that works for one person may not work for another.

Symptoms of secondary BMS may go away when the underlying medical condition, such as diabetes or yeast infection, is treated. If a drug is causing the problem, a doctor may switch you to a different medicine.

Thank you for your reply and advice. I have been to the dentist many times and they have referred me to our hospital to see the consultant. He biopsied the gum issue I was having and found it to be oral lichen planus (it is auto-immune) but the tongue problem was different and unrelated according to him. He checked my zinc and said it was ever so slightly low (on the cusp) and I have taken a supplement that has increased it. at a further appointment, he suggested trying Alpha Lipoic acid supplements as he had heard it helped some people. I have been taking it but no effect . They do not seem to want to delve any further into it but the problem has become so bad that it has affected my quality of life in a big way.

 

[Sunny]

Oh, hypothyroid is not fun. My mom had her thyroid completely removed, and she has never been happy with the synthetic replacements. It is very tricky to work with endocrine stuff like that; it seems like it is still kind of a mystery in some ways even for the experts. Did this start at the same time that you started that medication? Do you have any reason to suspect there may be a connection? If so, it may be possible to talk to a GP about alternatives to try?

As far as I know, the alternative would be "natural" desiccated thyroid hormone replacement which is made from pigs so is not an option. The tongue problem started quite a long time after hypothyroid diagnosis. I have no reason to believe they are connected but as you say, a lot of it is still a mystery for doctors I think. I have made an appt with the GP to ask for the MMA test and I am armed with the info about it being available on the NHS as I suspect they will try to avoid doing it.

 

[Sunny]

Of course you need to rule out B12 deficiency with a methylmalonic acid level test, as well as check for the MMFTH genetic trait which could cause you to need methylated versions of B12 and/or folate

The New Vitamin B12 Deficiency Test

How were your D levels?

Do you happen to know if I would have to stop taking my B supplement before having the MMA test? I was reading some things on the internet last night about it and saw someone suggest that not only do you have to stop taking it but actually for quite a long time, before having the test... ?