June 28, 2013 at 5:26 pm #474
I have a Geographic tongue that has come and gone all my life. Sometimes I get sores along with it. I am curious if this is part of EDS or a coincidence? Anyone else?June 29, 2013 at 3:57 pm #3847
Very common with us! My daughter just showed me her tongue last night — she was just starting to develop it, too. Is your histamine under control? Candida? Usually hitting both of these will eliminate it. Candida is TOUGH, because it tends to come back so easily, and your diet needs to be soooo strict. I’m working on a medication to make it easier for us to rise above this! I’m fiddling with the dosage right now. My daughter isn’t on it yet, and she said, “That is just not fair! Your tongue looks great!” Teen-agers! 😉July 5, 2013 at 6:52 pm #3866
That is funny. How old is your daughter? When I was a teen every imperfection was the worst thing ever. I was very self conscious. Now I could care less.July 5, 2013 at 9:06 pm #3878
My daughter just turned 17 this week! She is more aware of her body than most teens because she has EDS/POTS and I try to teach her about what is happening, a bit about genetics, why she takes certain meds, etc. Funny story — she can get the “medical school syndrome” – where students in medical school think they are developing most everything they read about! Ha. I showed her what to look for for basal cell carcinoma, showed her pics, etc and I got a text from her the next day: “Mom, can you get basal cell in your nose?!” 😉 She swears she doesn’t want to be a doctor. But interestingly, she is at a medical convention for kids for 2 weeks. We’ll see! She recognizes hypermobility, flushing, psoriasis, blah, blah, blah in friends and teachers, likely before their doctors do! I guess some may say we’re “hypervigilant”. *eyeroll* 😉July 8, 2013 at 3:51 pm #3882
Hi my son is 11yrs old and has had a geographical tongue since he was a toddler. He never had any problems with it until about 6-8wks ago he had differentshape sores all over his tongue that he said were painful I took a pic of it so I cocould show his Dr. bc I didn’t know how long they would be there andof course they came and went away a few ddifferent times. Also around the same time he had woke up wi th his one eye puffy and swollen it looked as if he had been hit in the eye. Also he woke up a few times with swollen lips and a few days ago out of know where his 1 hand got puffy and he said it was itchy and felt weird. I don’t know if any or all of these are any connection with each other or not. They all come and go and just started all around the same time. I showed his Dr the pic of his tongue and he said he had never seen anything like it and has referred us to a ENT. Also I asked his Dr to start him on zyrtec instead of the claritin he was on in the past and all of his symptoms have improved. But I will say there has been 4 different days that he missed his zyrtec and every time one of thoes symptoms has returned. I myself take zyrtec and if I miss my does I notice notice it before the afternoon. I know it sounds weird but it seems to me that zyrtec helps maybe bc we have too much histamine but I could be wrong. How do you know if you have too much histamine’s? Is it a ENT who can help with this?July 8, 2013 at 4:30 pm #3883
But I will say there has been 4 different days that he missed his zyrtec and every time one of thoes symptoms has returned. I myself take zyrtec and if I miss my does I notice notice it before the afternoon. I know it sounds weird but it seems to me that zyrtec helps maybe bc we have too much histamine but I could be wrong. How do you know if you have too much histamine’s? Is it a ENT who can help with this?
Hi Jrl_3327! Did you see my video about candida and looking at our spit? It’s here: http://prettyill.com/videos/watch/are_you_immune_system_challenged_how_to_tell As you’ll hear, I went to FOUR different ENT’s — all of them were perplexed. I found that amazing, as this is not rocket science! Finally, it was seen in my throat via an endoscopy. Jeez Louise! Mine is basically under control with antihistamines (funny that you, too, found Zyrtec so helpful), and a decent diet. I’ve always eaten fairly well (lots of veggies!), but I am not a huge fan of controlling every source of histamine or simple carb that enters my body. I know we NEED some histamine, and I believe our funky immune system is one reason we fight this chronic candida. I’m working on that now, because as most of you know, I seem to have a theory about everything! Ha. One of my doctor friends became PARALYZED, developed geographic tongue, and no one was able to help him! He had to figure out on his own that his system just couldn’t tolerate histamine. Perhaps he and I are now ‘jaded’ and there are doctors out there who can help you. Unfortunately, I ended up going ‘solo’, much like my friend did. If you find a good doctor, please add her or him to our good doctors thread and please keep us posted! A good dentist can give you some mouthwashes to help minimize the pain, meanwhile. 😉July 8, 2013 at 5:09 pm #3884
Thank you for the info. I will check out that video now. And any new info or Doctors that may possibly help me I will for sure keep you posted. Thanks for all your hard work and effort it’s greatly appreciated!:)July 8, 2013 at 5:47 pm #3885
Hi Dr.Diana, I just watched your video on immune system challenged and I just did the spit in the glass of water and then I had my son do it. Mine looks a little worse than the photos you showed in the video very ummm.. like webbed from the top down to the bottom of the glass very very weird ha! then my son did it and his did absolutely nothing the water is clear. I also have a white coat on my tongue and have for awhile now no DR has ever said anything about it. Ha I wish I could have sent you a photo of mine its not as bad as you described your families. but it is way worse than the 2 photos on the video.July 22, 2013 at 8:09 pm #3933
Hi Dr.Diana, I just watched your video on immune system challenged and I just did the spit in the glass of water and then I had my son do it. Mine looks a little worse than the photos you showed in the video very ummm.. like webbed from the top down to the bottom of the glass very very weird ha! then my son did it and his did absolutely nothing the water is clear. I also have a white coat on my tongue and have for awhile now no DR has ever said anything about it. Ha I wish I could have sent you a photo of mine its not as bad as you described your families. but it is way worse than the 2 photos on the video.
Jrl_3327 — Yours looked WORSE than the worst one in the video (which was from a patient not in my family BTW). Well, Eww. ha. Your son’s was normal? Interesting! I’d keep checking (of course ask your docs), and now that you’ve mentioned that Zyrtec helped him, I can’t help but wonder if it is a histamine reaction… Interesting… 😉July 22, 2013 at 8:48 pm #3935
Hi Dr. Diana I checked mine that very next morning and I’m not sure if it makes a difference on what time of day you do it bc my morning one was sooo gross and thick way worse than the day before which I had done it around 5pm the 1st time and 9am the 2nd one. DRAMATICALLY different. 2nd one looked like thick snot. Ik gross right! I also checked both my daughters there’s looked similar to the photo’s in the video. I haven’t rechecked my son but I definitely will do so.. when the spit does do the nasty thing in your opinion what does that mean like what should I have my Dr check for?July 22, 2013 at 9:02 pm #3936
Sorry one more thing Dr.Diana my son went to the ENT and was really no help at all for my son’s geographical tongue. He refered us to an allergist. Do u know which kind of Dr would be the one to figure out if it is a histamine issue? Or is this just another one I have to fig out on my own… Do you know besides the zyrtec is there more to treating a histamine problem or is it as simple as the zyrtec?
JamieJuly 23, 2013 at 2:24 pm #3938
Hi Jrl, Yes, the spit changes throughout the day. If the tongue looks white, or with geographic tongue, it’s good to rule out histamine problems and/or candida. As far as anti-histamines, I used to think that a mast-cell specialist would be a good one to see, but honestly, “true” mastocytosis is very rare. H1 and H2 antagonists (and maybe Quercetin and/or Ketotifen) will likely keep it under control. Cool? I went to so many ENT’s, it was crazy! Maybe yours are smarter than mine, but if an ENT or allergist can help you, please share them in our “good doctors” thread! 😉August 19, 2013 at 3:06 pm #4137
Sorry guys I never was notified of any responses. Anyways, it was a dentist years ago that mentioned my geographic tongue. I was told it was no big deal, so like all my other weird symptoms, I ignored it. I have yet to notice it in my kids. I think mine showed up post-pubescent . I have suffered lifelong with allergies, and so do my kids. I have gotten to the point where I don’t take anything but eye drops. Nothing seems to help.
ShondaAugust 19, 2013 at 4:14 pm #4139
Hi I have had life long symptoms that were all over looked until 2011. I myself don’t have a geographical tongue but my 11&1/2yr old son has it and I noticed it before age 2. Well my sister whose a dental hygentist told me what it was when I showed her the weird design on his tongue. All 3 of my children have really bad allergy problems. I have some but not as bad as my kids. My oldest daughter now 17 says nothing helps her all she uses is eye drops also Me and my other 2 take zyrtec which seems to help well for me more so. My son’s tongue now gets sores that are painful we have fig out surgar is one thing that triggers the sores. Does your tongue hurt by chance bc my son’s just started in the last 3 months or so?August 19, 2013 at 4:15 pm #4140
Sorry I see that u said you do get the sores that come and go..:)
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