Sjogrens - Mouth Symptoms?
 

Hi!

Question for you all! My sister has been experiencing sore mouth and sore tongue since the beginning of September. She has been to her doctor and dentist, and they both came up with nothing.

She thought it might be thrush, because she thought it looked a little coated..but the doctor said no.

She did ask to be tested for B12 deficiency and Celiac Disease, and she does have autoimmune thyroid disease.

I did think of Sjogrens because she does have Hashimoto's thyroid disease... but what I don't know is if the dry mouth symptoms can be painful/hurt. Do you think she should be tested for Sjogrens, or look another direction?

Thanks for any input.

Cara

P.S. Check this out. I don't really want to join this forum just to ask a question for my sister, but someone forwarded this to me because of the discussion about gluten! I'm thinking that's our Billye??
http://sjogrensworld.org/forums/index.php?topic=628.0

It is very interesting to hear doctors are recommending this. Debinaz who has posted on the subject was able to reverse her anti-ANA antibodies to negative with dietary changes...as well as control her Sjogren's and seizures.. by removing gluten (any actually quite a number of other foods problematic for her).

Cara,

One thing you might look into is Sicca Syndrome. Essentially, Sicca syndrome is a version of sjogrens.

The difference between sicca and sjogrens is that people with sjogrens will have positive test results when they have autoimmune blood work done (ANA, sed rate) and people with sjogrens usually have internal involvement (organs).

Sicca syndrome does not cause positive blood results, and does not cause internal involvement... siccs is basically dryness of any/all of the external areas (mouth, eyes, nose, vaginal, sometimes skin).

I was diagnosed with sicca symdrome because my sjogrens tests were negative, and because I have external dryness and no internal involvement.

Some doctors use the terms sicca syndrome and sjogrens to mean the same thing, but technically they are slightly different...

Anyway, when there is dryness present with no apparent cause, sicca syndrome is something to look into.

One thing to remember with oral dryness is that saliva is a tooth protectant and helps to rid the mouth of bacteria - so when a person has a dry mouth they have to be more vigilant about oral hygeine and tooth/gum care.

I also use Oasis brand oral spray to combat the dryness - and it works great. Biotene also makes great products for oral dryness (toothpaste, mouthwash, oral gel, gum, etc...) but I personally prefer the Oasis brand stuff.

Hope that helps,
Liz

Yep, I'm guilty
 

Yes, Cara, I sent that link for you. I have Sjogrens and belong to that forum. What question do you want me to ask?

And to answer your question about the dry mouth. Yes dry mouth and tongue can be extremely painful. Mine hurts so badly that my diet is severely restricted because of it. If a mouth is very dry, it will look coated. Mine does and no amount of brushing the tongue does any good. Just makes the tongue hurt more. You can actually see cracks in my tongue and my mouth stays raw from where my teeth rub it.

And you are right autoimmune diseases usually come in two's. I have RA and Sjogrens. Some of the other members have autoimmune thyroid disease and Sjogrens. There are more combinations. It would be worth while to have her evaluated by a rheumatologist.

Billye

I had a problem with the inside of my check and on some of gums. I was basically told it was either loko plakia (sp?) or lichen planus. It was considered to be an auto-immune problem. Mine went away right after had a biospy done.

Loko plakia literally means white spots. Lichen planus looks like lichen growing on your skin (or inside your mouth). The lichen stuff can be white and have a lacey quality. Mine would change and would cause pain sometimes. It was like the skin was reproducing faster than normal. It was difinitely auto-immune. I would actually scrape out some of those tissue cells and that would make the area less painful. Some parts inside my mouth would feel like sandpaper, and sometimes my mouth would feel dry.

I don't know if this matches what your sister has. My limited understanding of Sjorgen's is that the mucous gets tight and sticky.

some detective work:
 

In my experience, the first things to look at are toothpaste, and
hard candies.

There are papers on SLS and triclosan causing mouth irritation. (SLS is sodium lauryl sulfate). Some of the fancy new toothpastes are very irritating to people.

Sucking on breath mints, hard candies is the next thing to watch for. Chewing gum, etc.

Next up are vitamin deficiencies:
Low niacin is called Pellegra ...and mouth burning/pain and swollen tongue are
signs of this.
And low zinc status, may be contributing.

Mouth pain can occur with some food allergies...esp shrimp and shellfish.

Low Biotin too. Poor Vit C intake? Low CoQ-10 (from taking a statin?).
So trying at B50 and Vit C might show improvement.

Next come drug side effects.... using asthma inhalers? Not rinsing the mouth after a steroid one.
Taking an ACE inhibitor?

Some viral illnesses cause mouth/throat/tongue pain... shingles, and Mono are examples.

I won't repeat the other posts here, on autoimmune causes, as that seems to have been well covered. ;)
Sometimes one has to be a detective of sorts, to ferret out puzzling symptoms.:p

Thank you everybody~ I checked back here the first couple of days, and then I almost forgot I had posted this. I appreciate your responses.

Billye, I think you answered my question already...which was whether dryness can be painful...and that it can look coated..and hurt more if you brush it.

Thanks Liz, orthomolecular and mrsd, too!

I am going to forward this thread on to my sister, and let her decide what she might want to follow up on.

Cara