Sore on my tongue and stomach issues

I have an extremely sensitive tongue these days but I don't get sores in my mouth. I don't know that this is done but maybe they need to do a culture of these sores to see what they are. I'm assuming you went to a regular dentist for this. There are dentist that specialize in diseases of the mouth and you might look into seeing that kind of a dentist. I know my dentist wanted me to see one but the closest one was 4 hours away and because I have lower back issues there's no way I could drive that far. And I really didn't think I needed to see one anyway. But if I had the sores like you do I would make the drive.

As for your stomach and diarrhea issues you are on the right track in seeing a gastro doctor. Your stomach/diarrhea problems could be IBS (irritable bowel syndrome). And your gastro doctor will diagnose that if that's what you have. My daughter-in-law has it and I guess there's not a lot that can be done for it. But I really don't know much about that disease. But good luck to you I hope you get some things resolved in the near future. I live in the Midwest and a decently large town and the soonest I could get into any gastro doctor is January. The one my GP called for me was not till April! I hope you can get in sooner than that where you live.

Hi Robin.

I've been having very similar issues. I'm only recently diagnosed, but since before Sjogrens came into my life, I would get a very painful tongue as well. I didn't get open sores, but i would get very tender spots on my tongue and I'd develop bald patches where the taste buds had fallen off. Years ago I googled this and came up with the term 'geographic tongue', but I've never been fully satisfied with that diagnosis especially since my tongue was so painful and geographic tongue is supposed to be painless.

I've also been diagnosed IBS, but this was years before I knew anything about Sjogrens. IBS is a catch-all term to describe gastrointestinal discomfort/issues when no specific cause can be found. I reckon the Sjogrens was reeking havoc all this time. Recently, however, I've developed nausea, weight loss, globus sensation (feeling that I have a lump in the throat) and difficulty swallowing. I had a good test for celiac, but it came back negative.

I've seen lots of specialists recently (though not a gastroenterologist yet because I'm still waiting for the appointment) and things are slowly being ruled out. This leaves me to believe that my tongue and gastro symptoms are simply caused by my lack of saliva. At least that's what I'm telling myself. I'm otherwise a very healthy, active 41 year old woman with no other health problems.

I'll be interested to hear what your gastroenterologist says about your symptoms. I'll report back once I have seen mine.

Please keep us posted!

I have all of these symptoms too and have done for many years and yet have tested negative for sjogrens.  I too was told I have geographic tongue but my tongue is so painful I sometimes do not know what to do with my self and stick it in warm water which actually does nothing but I keep hoping it will help.  Sometimes it bleeds as well.  I have told my rheumatologist about this along with every doctor I have seen in the past ten years but not one of them shows the slightest interest.  I have lost a great deal of weight, 2 stone in the past year, and have gastroparesis which means I have to blend all of my food into baby food consistensy and can only eat a cupful at any meal or I am extremely uncomfortable.  It is quite honestly a nightmare but because all the tests are negative for sjogrens, despite having all of the symptoms, including all of the CNS symptoms, I am left without a diagnosis.  I have found that blending my limited food has helped my tongue which is a relief because at least I don't hurt it by chewing.

Sorry if this depresses you further but at least you know you are not alone in your quest for answers.

Hi Robin l have a geographical tongue all the time dentist confirmed it said it autoimmune mine gets worse and hurts when I'm feeling poorly or eat certain foods. Salt vinegar ketchup and anything acidic burns my tongue. I see a gastrologist for stomach cramps and had a colonoscopy which showed diverticulitis. Lots of people with autoimmune diseases suffer with some sort of stomach problems ie IBS, chrons and similar.

Hello Robin.  Yes I have.  I've had sjogies for over 30 years now.  Two years ago started getting most awful diarrhea.  It seems that sjogies can cause the body to develop an intolerance towards fat.   I'm now on a fat-free vegan diet which consists largely of vegetables, oats, soya products, Ryvita and lots of ginger tea and the problem has cleared up thankfully as it was 'extremely' unpleasant and suspect if I had not found out myself how to cure it would have eventually killed me - started losing tons of weight and everything was just passing straight through my body in a horrible watery mess.  Would add went for all manner of tests - they couldn't find anything that would cause the problem.  

I had tongue blisters for 18 months; turned out I was unable to have tomatoes. Your stomack problems look like IBS. I get more IBS problems if I eat too much gluten. It’s just an intolerance in my case. Hope this helps.

Thank you all for your responses.  They have given me things to discuss with my doctor.  Now I don’t feel like I am alone in this fight!!!!!

hi  i have had diagnosied with SS now for 23 years the first two years were dreadful for me i actually had alcers in my mouth and down my windpipe for two years, hundreds of them in fact that was my very first syptoms was a red gums and then all these alcers  appeared and then  i could hard eat anything as everything tasted like vinegar. Now my tongue bleeds and it bleeds quite a lot when it gets dry,,, I get severe  cramps everywhere now, in my stomach  in behind my knees in my shoulders, in legs in my fingers , in my back, I think basically every where, i don"t know if you can do that much,,, or is just the progression of the illness.

 

Hello Robin,

?I am so sorry you have to go through this, but as you can see you are not alone, there are many of us!  I do get the sores on my tongue on and off, but my poor mother has this all the time, and hers bleeds often.  I have SS, and now Lupus, she has Lupus, and now SS.  Very often, if we have one, we have the other, or at least another auto immune issue, or issues. Mine started as most others, dry eyes, and mouth and such, but over the years has taken on a life of it's own and gone inside to my organs.  My adrenals, kidneys, liver and intestines.  I have had horrid problems with my intestines, and have a great gastro doctor that has me pretty well straightened out now, and on meds that work THANKFULLY!!!  I can't take the one med, plaquenil (sp) that most can take, as it caused damage to my eyes, which is rare, but it happened within the first 3 months, and had to be taken off of it.  I also can not take methotrexate, as it made me very sick.  I also don't take any pain meds, as they all make me sick.  My body does not like many meds and pain meds, all they do is make me sick, and still leave me in pain, so I just deal with it.  The only things I do take is prednisone and Imuran for the SS.  I am however on a lot of meds for the illnesses.  My gastro doc has me on protonix and the lowest dose of amitriptyline, as I was always bloated and feeling sick to my stomach. This came after many, many awful tests.  I could not eat, I was so bloated I just could not put anything in my mouth.  After getting doses right, I no longer have a big issue with these problems.  Every now and then I can feel a bit bloated, but nothing like before!!!  And it now only lasts for a day, but I am also on another med to help the bowls, which I can't remember off hand.  I can get that for you later if you like.  But it regulates, rather than anything else.  It has taken years, and 4 specialist, and my regular doctor all working together to keep me going.  I also have peripheral neuropathy in both of my lower legs and feet.  My rheumy says it is all related directly to my SS.  I also have RA and a couple of other auto immune related issues, they just seem to keep adding up.  All we can do is make sure we and our doctors stay on top of things, and hang in there!!  It is one wild ride!!  I know it sounds scary, but not everyone gets this bad, and I pray you will never get to this level!!!  I am very lucky to have wonderful doctors, and they all work together!!!  I now this is not always so.  I am lucky to live where I do!  I live in Idaho, and we have wonderful care here.  It takes no time to get into see our doctors.  I will be 63 in a couple of weeks, so I still have to rely on regular insurance, and I am retired/disabled, and my docs even work with me to be careful on charges and such.  

?My advice to you is find the best doctors/specialists, and make sure you are comfortable with them!!!  Make sure you are satisfied with them, don't be afraid to ask questions.  Get 2nd, 3rd opinions if needed!!  You know your body better than anyone!!  I completely trust my doctors, as I have been going to mine now for 13 years.  I wish you all the best, and if you have more questions, or need to talk, we are all here for you!!!  There are some nurses, and others with a lot of knowledge here!!

?Hugs to you!!  Deidra

I have suffered from a tongue that felt like somebody took sandpaper to it. It's painful to eat and I can't use toothpaste with a strong mint flavor because that burns too, everything makes it hurt. Every dentist I ever saw about this problem diagnosed me with burning tongue syndrome. And I told them all I do not have that because I don't have the same symptoms. then on accident I found out I had a fungal infection. I went to an oral surgeon to have him biopsy a sore on my tongue that had not healed. When he submitted the tissue is a lab he asked the lab to test the sample for a fungal infection and it came back positive. I took the medicine he prescribed to me to treat the thrush. But interestingly enough I had absolutely no white splotches that is typical of thrush. So I started doing some Googling and I discovered that people with dry mouth such as we have will not show the white spots when they have thrush. And if you're on prednisone or use a steroid inhaler you're much more prone to thrush than the average person.

So I realized after I completed the treatment, that my tongue was no longer as sensitive and sore as it had been. And that's when I realized that I had probably had a fungal infection in my mouth for maybe a couple of years but because there were no white splotches I had no idea nor did my dentist know that I had thrush.

Knowing this help me to know when I did have thrush so that I could call the dentist and ask him to prescribe me medication to treat it. My one frustration is that I would like a preventative because I've had thrush three times in the past 6 months.