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Gluten and it's connection to Geographical Tongue

I may have some interesting information for sufferers of Geographical Tongue. My son who is now 16 has had the condition almost on a daily basis since birth, like everyone else who suffers from it, we tried everything and every specialist to no avail.
Just over a year ago my son collapsed and was raced to hospital, he had no iron at all in his body and was on the verge of death, so much so he was given a full blood transfusion. After months of testing and a stomach/intestinal biopsy, he was finally diagnosed with Coeliac Disease - a severe allergy to gluten.
As a result, his diet changed and all gluten was removed. He is now a very healthy strong teenager.
The interesting fact though is that since the gluten was removed from his diet a year ago, he has had a completely clear tongue. Not once in the last 12 months has he had any flare ups. He has gone from almost daily to none at all. We noticed in the past that although acidic foods caused pain and discomfort on the affected area, it was never the cause of the geographic tongue. Now however, he can eat pineapple, eat salty foods and drink orange juice, for the first time in his life.
He has had a healthy clear tongue for a year and counting.
I would like to see the medical profession research further into the connections with gluten and geographic tongue, as it may well be an early indication of gluten intolerance, a disease that almost killed my son. I do not believe this is pure coincidence, as gluten intolerant people have the villi on the intestinal wall worned down by gluten, a similar thing to what occurs on the tongue - the protection is eroded away.
It is definitely worth a closer look instead of the shrug shoulders - no cure - live with it attitude of most medical practioners.
Is there a connection? Has it really been ruled out? Where is the evidence that they are not related?

9 Responses
568261 tn?1250270162
Thanks for the info.  I am glad your son is ok.    your definitely right on the shrugging of the shoulder, live with it attitude.  I have a daughter in law with Celiac.  Never heard of the geographic tongue disorder tho.  will look into it.
Avatar universal
Great information,,,I have had Geographic Tongue for years and have never believed it was something that you just had to live with (no cure).  It is uncomfortable and at time scary looking.  I have noticed if I don't eat wheat it gets considerably better.   I have always thought that the citrus was not the problem, it just happens to aggravate it when the patches are already there.  Good Luck with your son, it sounds like he is doing great!
Avatar universal
Hey Brandy, Im so glad your son is better, Mine hit me at age 22, and the thought of being a teenager with such an embarrassing condition makes me sad. I have always thought this is allergy related, even the vitamin deficiency that so many talk about, and lack of absorption that I hear of, are related to food allergy in my mind. If you have an allergy you constantly wear your intestine down, and therefore cannot absorb nutrients properly, and therefore have deficiency in certain vitamins. Thank you for the info, I'll try going gluten free again, and see what happens!
Avatar universal
Hi,

In my mid teens i started getting geographic tongue, and whenever i drank citrus/pineapple etc it would burn and huge lesions would appear/get worse. I got progressively sicker and sicker as the years went by and doctors kept telling me my tongue was nothing to do with it and that it was just geographic tongue. The conversations went along these lines:

Me: My tongue is extremely painful and affecting my life and i'm getting sicker and sicker - are you sure nothing is wrong with me and are you sure its not connected to my tongue.

Doctor: Geographic tongue does not cause pain
Me: So your still saying I have geographic tongue?
Doctor: Yes
Me: *hits head on wall*

After i got too sick to work they told me i had Sinusitis and gave me long drawn out treatments of antibiotics which got progressively more powerful until they gave me Ciprofloxacin (NEVER TAKE THIS EVER!) this made me incredibly sick and gave me a huge rash over my entire back which lasted over a year. The doctor denied that it was anything to do with the cipro (google cipro you'll find a rash that can be permanent can occur reasonably frequently - but don't trust me trust the doctor...)

To cut a long story short i finally figured out i could not eat gluten.
I have had 2 different blood tests but not the biopsy and both tests were negative for coeliacs. However after well controlled food testing by myself it was proven beyond all doubt that the gluten was the cause of my irritable bowel syndrome, and also it was making me have chronic hayfever like symptons. After a while of not eating gluten i suddenly realised my tongue was cured, i could drink juice eat pineapple etc and have no reaction. I also got my health back. I have been gluten free for over a year now. 3 days ago on my birthday i decided to treat myself and ate a bread bun. My bowels have been terrible, i've been tired and foggy - and to top it off i just drank a glass of orange juice and my tongue instantly flared up with lesions and burned.

Be very wary of doctors. Most are like a trained monkey - very useful at what you've trained them to do - absolutely useless if it falls outside the training.
Avatar universal
IMO Geographic tongue and Celiac are related.  Celiacs is actually an auto-immune disease.  When you have one auto-immune disease/condition you'll often find you have others.  You'll probably also find them in your family.  Anyone with Type 1 diabetes (not type 2) or Celiacs, or Geographic Tongue, get tested for other auto-immune disorders for which you have symptoms.  After 8 yrs of feeling miserable and being extremely anemic,and 8 different doctors, and being threatened with need for blood transfusions I got lucky.  A GI doctor after reading my symptoms said, "I'll bet you're a Celiac." After blood test/GI scope turns out I was as are my 2 kids, (1 with Geographic Tongue and 1 cousin with it), My dad, 2 cousins are Type 1 Diabetics. Me and 1 cousin DX with Juvinile Rheumatoid Arthritis as kids. These are all auto-immune diseases.  Bottom line, if you have a Geographic Tongue, it wont hurt to have a Celiac blood panel done and it could save your life.  It did mine!!!  BTW I'm Gluten Free for 1 yr and half  and feel fantastic....FINALLY!
Avatar universal
There is definately a link between gluten intolerance and Geographic Tongue in that many people with Geographic Tongue find that eliminating Gluten from their diet helps. But that is not the only cause of Geographic Tongue. I have eliminated my geographic tongue and helped many others eliminate theirs without eliminating Gluten. Although our doctor recommended vitamin regimen does include eliminating gluten. That being said if gluten is your problem doing the other things obviously won't help but if that isn't the cause there are still a lot of other options. I'm glad you found the cause of your son's problems. See my article Gluten Intolerance and Geographic Tongue http://healthytonguesecrets.com/2012/03/gluten-intolerance-and-geographic-tongue/ for more info.
Avatar universal
I have geographic tongue and I mostly avoid foods which I know will cause a flare. Every now and then I will eat something that causes an allergic-type reaction that affects the inside of my cheeks and the jaw joint at the back of my mouth. I get red, raised streaks that cause inflammation and numbness. Has anyone else experienced this, and what causes it ? I had pinto bean soup and cheese for dinner. Just beans, onions, garlic, cumin, sea salt, pepper and ham hocks. I had the soup tonight and two nights ago with the same result.
Avatar universal
How long did it take for your geographic tongue to clear up after going gluten free?  I am curious because I have had it all my life, but I use to have occasional flare-ups.  Now, it has been ongoing w discomfort and sometimes straight out painful for the last 2+ years.  I even have fissures now! :(

Many other health issues point to a gluten intolerance, but I am just wondering how long is took after going "gluten free" for all of you to have a clear and healthy tongue?
Avatar universal
I have had geographic tongue since my 30's. I am now 55. I too am tired of the no known cause/cure from the medical community. Recently due to other medical conditions (thyroid), I started paying attention to my tongue again. It is too big for my mouth, teeth marks, fissure, and then of course all of the geographic markings. It was the ugliest tongue ever. I showed it to my doctor and she just shrugged and said "mapping". NO I said, it does not fit in my mouth. Anyway... long story short. I gave up gluten to see if it would affect the tongue---- and chronic migraines. 5 weeks of being off of gluten and my tongue is completely clear. Perfect. This can't be unrelated.
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