Hi just been diagnosed with geographical/fissure tongue - does anyone with APS have this?
Yes. I’ve had it off and on for years. The literature states it is not painful but it is for me. I’ve also had episodes of burning tongue.
Nancy in West Virginia
Yes it is - just got to try and work out my triggers - I know oranges is one but clementines and satsumas seem ok
I don't, but my sister does.
Does your sister have APS
no, but I do.
Have you had your B12 tested of late? ncbi.nlm.nih.gov/pmc/articl... MaryF
No but plan to get bloods done. Specialist said can be due to B12, Iron and Folic acid deficiencies. Was B12 many years ago
It is very common this deficiency as we age, and also through autoimmune disease, please don't supplement before testing. MaryF
I have it too. Painful.
Indeed - wondered if there was an link to APS or just another weird and wonderful symptom to add to the list
Pernicious Anaemia, another autoimmune disease, they come along like buses.... etc. MaryF
Yes I have it too. Doesn’t hurt though but it sure is unsightly at times!
I just looked up info on this and the lights in my head went 💡Back in my constantly ill college days ( positive LA, all the symptoms but no lupus diagnosis) I had this. Very painful and meant I ate more pasta and potatoes. Since I now know I have Celiac, in hind sight this modified diet just made things worse.
The specialist said hot/cold, spicy and cheese can also be triggers - can modify the first 3 but I am a cheese fiend so pray that's not one of my triggers
My older sister, who also attended Vanderbilt, introduced me to this wondeful health food store in The Village where they sold healthy sprouts. (Recall in the 70s health food store were just starting.) She and I both had lupus like symptoms, including that tongue thing, which partly resolved when we graduated. Decades later I learned that alfalfa sprouts are linked to lupus flairs. I think that was my trigger. I phoned my sister and just said, " I just heard on NPR that alfalfa sprouts can trigger lupus." Her response "OMG! That explains everything!"
Yes a known trigger for flares, as are other things.. for me Echinacea and also Elderberry herbal medications. MaryF
Yes I have APS and with that Geographical tongue. To know about my diagnosis and background for me please see my post a few days ago entitled at wits end diet advice. I have had Geographical tongue all along for years since suffering with this. I find it is inflammation and it can get quite sore but nothing to worry about. A good mouthwash helps as do salt water rinses but since I have been Gluten Free it is much improved. It always worsens after stress and when I am a little run down. Eat well, de stress and eat foods that keep your inflammation at bay and it should improve but will probably always come and go just like everyone else says. Do whatever you can to keep your body well and soul well. It looks awful and is sore at times but more annoying than worrying.
Very connected to B12 deficiency. However if somebody is supplementing it can obscure the true result of the test for up to four months. MaryF
Yes I agree since being diagnosed with APS 3.5 years ago I have come to realise that I have no choice to listen to my body to control symptom flare-ups.
Huh, I never would have thought to connect my geographic tongue to APS. Adding it to the list....
I don’t know that there is a connection (although there may well be), but was interested to find out if others have both.
Hi I don't but my son who has Crohn's disease (also autoimmune) had it very frequently as a child
Update- at a visit to the dentist a few days ago (1st time for a few years) - she asked if I ever have a saw mouth - I told her about geographical tongue diagnosis. Apparently I also have mild lichen planus, another autoimmune disease. Two new ones in as many days - I seem to be collecting them!
Yes I have both, fissured tongue and geographic tongue. The first time I had an episode, a really bad episode of geographic tongue was after dental work. Painful burning the papillae disappearing back and forth coming and going. The dentist did not know what it was and sent me to an oral pathologist in NYU Hospital in New York City. She immediately diagnosed it as geographic tongue. My mother also had both. And it's interesting besides having APS, I also have Factor V Leiden thrombophilia, which is another blood clotting disease inherited from either my mother or my father. Another interesting fact, my mother had a tongue tie, so did I as a child but it was surgically corrected, both of my sons were born with tongue tie and had them surgically corrected, and my son's daughter, my granddaughter was also born with a tongue tie which was corrected by laser when she was 6 years old. It seems strange that all these things related to the tongue are inherited so I think geographic tongue maybe also. Especially since my mother had it although it was never diagnosed as geographic tongue but her fissure tongue was very obvious
Even the mildest spicy food bothers me even when I'm not having episodes and flare ups so I just make sure that I don't eat spicy food. Pineapple also cuts my tongue up just from one bite and I believe it's all related. They are both benign conditions, nothing to worry about, just annoying.
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