Burning Sensation In Mouth

[flowerqueen]

Has anyone ever had a burning sensation in their mouth (upper palate), tongue and inside of lips? I have noticed this getting worse over the last week or so. I have looked on line and there seems to be various causes. I just wondered if anyone with Celiacs had it, and what they thought might be the clause. Chewing gum seems to help, but I can't do that 24/7.

[IrishHeart]

My mouth burned for nearly 3 years. It was unrelenting and horrible. But it 's gone now.

 

My GI  doctor and I have read everything there is on it and some causes are:

 

B-12 deficiency, damage to nerves, hormonal changes, a very dry mouth, which can be caused by medicines and disorders such as Sjögren’s syndrome or diabetes, any number of nutritional deficiencies, oral fungus or some kind,

acid reflux.

If chewing gum helps, it seems as if your mouth may be dry.

 

Have you asked your doctor about Sjogren's? I know several celiacs who have this syndrome as well.

 

I just read your sig line and see you have diabetes. Maybe you can ask your endo about this?

Sorry, hon, I know it is not a pleasant sensation at all.

[flowerqueen]

My mouth burned for nearly 3 years. It was unrelenting and horrible. But it 's gone now.

 

My GI  doctor and I have read everything there is on it and some causes are:

 

B-12 deficiency, damage to nerves, hormonal changes, a very dry mouth, which can be caused by medicines and disorders such as Sjögren’s syndrome or diabetes, any number of nutritional deficiencies, oral fungus or some kind,

acid reflux.

If chewing gum helps, it seems as if your mouth may be dry.

 

Have you asked your doctor about Sjogren's? I know several celiacs who have this syndrome as well.

 

I just read your sig line and see you have diabetes. Maybe you can ask your endo about this?

Sorry, hon, I know it is not a pleasant sensation at all.

Thanks, I seem to have one set back after another, which is quite depressing. As you have suffered from it in the past, you will know how bad it gets. It gives me hope though, that you have managed to get rid of it - even though it took a long time. One doctor in the past mentioned Sjögren's syndrome to me, relating to another problem I was having, but my own doctor said she had never heard of a test for it

I used to take mega B vitamins as I don't absorb it very well, but recently (and interestingly) I have not taken it, so the vit B12 may also hold the key? I would be interested to know how many other sufferers are out there that also have Celiacs with BMS. Also, I have nerve damage in other parts of my body, so that too needs investigating. I have a couple of hospital appointments soon, (one tomorrow and one next week, seeing different specialists) so maybe they can throw some light on this.

I honestly don't know what I'd do without this board as we have nothing like it in UK, that I know of.

[IrishHeart]

Could be  a B vitamin def or maybe some diabetic neuropathy? I am not a doctor of course, I just know these things can cause this neuropathy and burning, While I am no fan of medications myself,  a low dose of something like neurontin (gabapentin )may help with that. Ask the endocrinologist maybe?! I hope you can get some relief soon. Let me know how you make out after your appts.

 

Actually, there are several tests for diagnosing Sjogrens.

 

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[flowerqueen]

Could be  a B vitamin def or maybe some diabetic neuropathy? I am not a doctor of course, I just know these things can cause this neuropathy and burning, While I am no fan of medications myself,  a low dose of something like neurontin (gabapentin )may help with that. Ask the endocrinologist maybe?! I hope you can get some relief soon. Let me know how you make out after your appts.

 

Actually, there are several tests for diagnosing Sjogrens.

 

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Thank you, your help is very much appreciated. I have a feeling they are going to suggest something like Gabapentin for one of my issues any way, but it may mean weaning me off something else I'm in first. I will definitely let you know how it goes. Thanks for the info on Sjögren's I'll have a look now.

[greenbeanie]

A sulfite allergy can also cause this. My tongue swelled up during my gluten challenge last year, and stayed swollen and burning for months afterward. It hurt to eat almost anything. I was tested for everything they could think of, including a CT scan of my neck and blood tests for Sjogren's and B12 deficiency, and but everything was normal. I finally figured out myself that it must be a sulfite allergy, and that diagnosis was just confirmed by my allergist this morning. My diagnosis was based on a thorough health history and a 2-month trial of a low-sulfite diet that made the swelling and burning sensation go away then return upon reintroduction. She said there is no reliable skin prick or blood test for it, and it's not fully understood how sulfite reactions are mediated. It is a tremendous pain to deal with, since so many gluten free flours contain potato starch and/or bleached tapioca flour, but I feel so much better now. I was reacting strongly to naturally-occurring sulfites in vinegar, cheese, and other fermented foods even when I wasn't eating anything at all with preservatives added. Sulfites used as part of the manufacturing process do not always have to be declared on labels in the U.S., so there's no obvious way to find out whether something contains sulfites unless you know where they're likely to be found. They're in some surprising places, like on some restaurant potato products to prevent browning and in bottled lemon juice (which is often sprinkled on fresh fruit at restaurants). 

 

Anyhow, maybe that's not what's going on for you, but it's worth looking into if other possible causes are ruled out. The link below is a brochure from Health Canada that lists common sources of sulfites. (Gluten-free flour mixes are likely to be a very common source of sulfites for celiacs.)

 

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[HavaneseMom]

I have had burning tongue too for many years.

I read that iron deficiency anemia (which I have) can cause it, so I am hoping that it will go away as my iron levels increase.

I see that you have reflux like me too. The other thing I have noticed is that my tongue burns more when my reflux/gerd is flaring up. I'm not sure, but have wondered if maybe the acid is coming up when I sleep and then is burning my tongue. Might just be a coincidence. 

I am going to read up on the sulfite allergy, like greenbeanie suggested too.

[sweetsailing]

I have burning mouth syndrome, however for me it's directly related to a mustard allergy that was discovered about the same time as celiac disease.  Knowing that it's common for celiac's to have other food intolerances, my guess is that it's something food related.  If I eat anything with mustard, the symptoms will start within minutes and can last 1 - 2 weeks.  

[flowerqueen]

A sulfite allergy can also cause this. My tongue swelled up during my gluten challenge last year, and stayed swollen and burning for months afterward. It hurt to eat almost anything. I was tested for everything they could think of, including a CT scan of my neck and blood tests for Sjogren's and B12 deficiency, and but everything was normal. I finally figured out myself that it must be a sulfite allergy, and that diagnosis was just confirmed by my allergist this morning. My diagnosis was based on a thorough health history and a 2-month trial of a low-sulfite diet that made the swelling and burning sensation go away then return upon reintroduction. She said there is no reliable skin prick or blood test for it, and it's not fully understood how sulfite reactions are mediated. It is a tremendous pain to deal with, since so many gluten free flours contain potato starch and/or bleached tapioca flour, but I feel so much better now. I was reacting strongly to naturally-occurring sulfites in vinegar, cheese, and other fermented foods even when I wasn't eating anything at all with preservatives added. Sulfites used as part of the manufacturing process do not always have to be declared on labels in the U.S., so there's no obvious way to find out whether something contains sulfites unless you know where they're likely to be found. They're in some surprising places, like on some restaurant potato products to prevent browning and in bottled lemon juice (which is often sprinkled on fresh fruit at restaurants). 

 

Anyhow, maybe that's not what's going on for you, but it's worth looking into if other possible causes are ruled out. The link below is a brochure from Health Canada that lists common sources of sulfites. (Gluten-free flour mixes are likely to be a very common source of sulfites for celiacs.)

 

Open Original Shared Link

This is very interesting, and I thank you for taking the trouble to go into such detail. I will certainly investigate this. In the UK foods which contain sulfites has to be declared on the packaging. It's such a shame that other countries have not all done the same.

[flowerqueen]

I have had burning tongue too for many years.

I read that iron deficiency anemia (which I have) can cause it, so I am hoping that it will go away as my iron levels increase.

I see that you have reflux like me too. The other thing I have noticed is that my tongue burns more when my reflux/gerd is flaring up. I'm not sure, but have wondered if maybe the acid is coming up when I sleep and then is burning my tongue. Might just be a coincidence.

I am going to read up on the sulfite allergy, like greenbeanie suggested too.

I have taken medication for reflux (PPI) for many years, but recently changed to a different brand and the doctor also increased the dosage to 40mg, and by day 3 I couldn't tolerate it any more and stopped taking it. (Later finding out you need to come off it slowly, which was too late for me). After going through a rough patch and following other advice to prevent reflux, I have not had any acid come up into my mouth while I'm sleeping for the last 2 weeks, - as believe me, when it does, I immediately jump up out of bed, it is so bad, it always wakes me). So I don't think it is reflux which has caused my burnt tongue.(which is also in the roof if my mouth. Of course, I can't be 100% and it may not be the case for others on the forum.

I had suspected a food allergy as I already have certain allergies to begin with. I'm remaining open minded about all suggestions, as it would be a mistake to rule out anything without investigating fully. Thank you. The sulphite allergy definitely sounds more than a possibility.

[flowerqueen]

I have burning mouth syndrome, however for me it's directly related to a mustard allergy that was discovered about the same time as celiac disease.  Knowing that it's common for celiac's to have other food intolerances, my guess is that it's something food related.  If I eat anything with mustard, the symptoms will start within minutes and can last 1 - 2 weeks.

Mustard sounds like another possibility I will need to look into. I don't put mustard on my food these days, but I notice it is in a lot of ready made foods as flavouring. I think I need to restart by food diary, as there's been so many suggestions been put forward relating to food. Thanks.