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I have 2 questions about tongue sores. When I am glutenized, I get 1 to 4 spots on my tongue, under the front tip or along the sides. They start red with a white border, then the white border spreads out leaving the red smoothness behind. They usually appear in 3 to 4 hours or if they are delayed by 2 or 3 days. I have been very careful for 2 weeks and have had no known exposure. Then I went to a restaurant that dedicates a space to gluten-free cooking and I've never had an issue there before and had no reaction till 3 days later. I am wondering whether delayed tongue spots is a possibility> 2. question...if this is happening to my tongue, what is happening to my insides? I generally don't get many other symptoms any more that I am so careful. Sometimes after the tongue sores start I am foggy brained or anxious for a day or two, but little digestive symptoms. I am paranoid about lymphoma now that I saw some statistic about celiacs being prone to it.
Celiac.com 01/27/2011 - In response to a post on the celiac listserv stating that both a pediatrician and a dermatologist dismissed the possibility of a connection between previously diagnosed celiac disease and geographic tongue, I wrote the following: One of several early mentions of geographic tongue (glossitis) in association with celiac disease may be found in the medical textbook "Coeliac Disease" by Cooke and Holmes, Churchill Livingstone, 1984, on pages 84 and 85 under the heading "glossitis". They say that it occurs, to a greater or lesser extent, "in a majority of celiac patients" (1). Another very informative article on glossitis can be found at: http://www.nejm.org/doi/full/10.1056/NEJMc070200 In this recent article from the New England Journal of Medicine (2007) the authors also state that the connection between celiac disease and glossitis is very common. They go on to say: "Our report should alert physicians and dental practitioners to consider celiac disease in managing cases of idiopathic atrophic glossitis." In other words, they want physicians and dentists to be aware that there may be underlying celiac disease when they encounter glossitis. This information is neither controversial nor difficult to locate. Celiac disease is not the only cause of glossitis, or geographic tongue, but it is a common and long acknowledged symptom of celiac disease, with mention of this connection in the medical literature at least as early as 1974. My own experience with glossitis is that most of my problems went away when I began a gluten-free diet. The remainder of my glossitis resolved after getting IgG food allergy testing from Immuno Labs in Ft. Lauderdale, and removing all identified allergenic foods from my diet. (I have since re-introduced some of these foods but I avoided them for about 5 years. ( 12 years later, I still have to avoid some of the foods identified by that testing.) My questions/concerns are: Is your daughter eating gluten? Is it possible that there is gluten contamination in her diet? Is she eating oats? A significant portion of celiac patients do react to oats, yet oat consumption is now widely advocated. Has she had testing for common food allergies? If she is strictly gluten-free and avoiding oats, then food allergy testing may provide her with the the information she needs to eliminate this source of her discomfort. I am distressed that neither the pediatrician nor the dermatologist took just a few minutes to run a Medline search that would have informed them about the connection between celiac disease and glossitis and some possible treatments for her problem. Accidental or intentional gluten consumption, oats consumption, and food allergy testing are all relatively easy for either of these physicians to address. There may, of course, be some other explanation for your daughter's affliction, but these physicians' ignorance of the connection with celiac disease and their failure to run a quick Medline search does not inspire confidence in their opinions. You might want to pursue a third opinion on this issue, especially since the topical drug she was prescribed falls well short of solving such autoimmune/allergic problems, which almost assuredly is the underlying cause of your daughter's difficulties with her tongue. Sources: Cooke WT, Holmes GKT. Coeliac Disease. Churchill Livingstone, NY, 1984 Pastore L & Lo Muzio L. Atrophic Glossitis Leading to the Diagnosis of Celiac DiseaseN Engl J Med 2007; 356:2547June 14, 2007 Lampert F, Harms K, Bidlingmaier F, Kiefhaber P, Meister P.Pernicious anemia with dermatologic and neurologic involvement in a 10-year-old boy. Monatsschr Kinderheilkd. 1974 May;122(5):217-20. Barry RE, Baker P, Read AE.Coeliac disease. The clinical presentation. Clin Gastroenterol. 1974 Jan;3(1):55-69 I hope this helps. Best Wishes, Ron Ron Hoggan, Ed. D. Royal Roads University, Continuing Studies
Hi all. Glad to be here and to have this forum. Thanks in advance for all replies. June 2013: Sudden fever, swollen glands, white spots on tonsils, fatigue --went to doctor to test negative for strep, given antibiotics anyway. Two weeks goes by and throat is less sore but still covered with white spots. Extremely tired. Back to doctor, given stronger antibiotic. Weeks go by. No improvement. July 2013: --Second doctor. Tested positive for Mononucleosis. Given an oral steroid to help tonsils (prednisone). The curious thing about this visit is that my blood pressure is, for the first time in my life, high. 155/95. August 2013: Still very fatigued but other symptoms gone. Mouth ulcers begin to appear constantly. 3-5 at a time and constantly my companion. Blood pressure remains high. October 2013: Mouth ulcers constantly, and a new symptom appears. I have almost constant muscle twitches. All over my body and random. These will twitch a few times then move to a new spot. No weakness or anythingelse. Blood pressure still high. December 2013: Fatigue is gone for several months now. Have seen the doctor 5-7 times with no explanation for my constant mouth ulcers that still persist. Kidney panels and blood tests all normal. My blood pressure remains high and I am now on 5mg lisinopril to control it. At this point I developed a new symptom, Geographic tongue. Bald spots on my tongue will appear randomly and migrate. I went gluten free and the spots were gone in 8 days. Over Christmas I ate "normally" and the spots returned in about a week. I have tested negative on the blood panel for celiac disease and all of my nutrient tests were normal. The two constants right now are the mouth ulcers and the muscle twitches, as well as my high blood pressure. Could these symptoms, as well as the geographic tongue, be caused by nutritional deficiencies due to celiac? The gluten free diet seemed to help the mouth ulcers and the geographic tongue, but these could have just been a mere coincidence in timing. Has anyone experienced anything similar and could my symptoms be a sign of celiac, or do I need to continue my quest for an alternate diagnosis? Thank you so much for the replies!