<<Disclaimer: Verify this information before applying it to your situation.>> Many, many thanks to everyone who responded to my question about whether there is a connection between gluten intolerance and canker sores. Several asked why I was subscribed to this listserver and am still eating grains that contain gluten. Well, I had no idea that I was sensitive to any grain at all until I finally began putting 2 and 2 together. Then, because I got canker sores after having a pint of stout, I thought that I was sensitive to barley. Only two weeks ago did it occurr to me that maybe I should avoid gluten, and so I searched the Internet for a place where I might ask whether gluten intolerance and canker sores might be related. It looks as though I came to the right crowd. Most of the respondents seem to agree that there is a connection, although some aren't sure about a connection. There are two Internet sites exclusively devoted to canker sores or recurrent aphthous stomatitis. The pioneering site is done by Dallas Eschenauer at: www.users.uswest.net/~dallas7/aphthous.html Then there is a canker sore bulletin board that is very large and takes quite a while to download. It is full of anecdotal information and cures for canker sores. My favorite cure is posted by a man who cures his canker sore by lighting a match, blowing it out, and stubbing the hot ember against the canker sore. Ouch! There are many more "cures" like this that are, in my opinion, cautery agents. They are treatments of the symptom, not cures, but when you have one canker sore or a mouthful, you don't feel like a discussion of causes, you want a quick cure! The board is at: www.saveyoursmile.com/wwwboard/wwwboard.shml Here are the relevant parts of the responses from the celiac list. Where I make a comment, I put it in square brackets and put my initials (T.J.F.) at the end. Tom Fitzsimmons *********** *********** "Canker sores are notorious for being a result of being sensitive to gluten." ********** "...we Irish have far more celiac than any other group" [Definitely not encouraging news, although it's nice to be first at something! T.J.F.] ********** "Canker sores are caused by an allergy to something. Sometimes acid food will cause them. Are you a celiac? If so, you are eating gluten in wheat, rye, oats and barley. If not a celiac, then you are allergic to something. Try to eliminate one food at a time from your diet for a week. If you still have canker sores, then try another food, and so forth. I have found that plain baking soda applied to the sore will help to heal them." ********** "There is a phenomenon of MASKED food allergy. You have eaten wheat all your life, just as I did. But you have also eaten hundreds of other types of food. The other foods are MASKING the symptoms of wheat intolerance. It is only when you go on an elimination diet, say for two weeks, eliminating all gluten grains, then for 2 or 3 days eat a LOT of wheat - at least something 3 times a day, e.g., wheat cereal for breakfast, sandwiches for lunch, pasta for dinner....then note what symptoms develop. The symptoms may only start on the third day after your "binge" of gluten. Note whether you have a drippy nose/sinusitis, headache, stomach ache, heartburn, joint pain etc. I can suggest an excellent book that describes "masking" - "The Complete Guide to Food Allergy and Intolerance" by Dr Jonathan Brostoff and Linda Gamlin, published by Bloomsbury, ISBN 0 7475 1260 4 [I suppose in my case, I would especially watch for canker sores developing after the binge. Then again, maybe I have other symptoms that I have lived-with that and ignored T.J.F.] ********** "I...suffered with cankers for many, many years before being diagnosed with celiac disease four years ago. I would have forty (no lie) at a time, down in my throat, on my lips, oh it was horrible. I use to think the tomato gave me the canker not the bread in a sandwich! I do not ever eat gluten to much knowledge, which includes wheat, barley, oats, or rye. I only have to have a drop of it and I end up with mouth sores. My doctor gave me a prescription that is called LYDEX. It is in a tube, is a steriod so the doctors were not happy to give it to me, but did under strict orders. A little tube lasts me for two or three years. If I get a canker, I put in on and the sore is gone the next day. Nothing that I ever tried helped, nothing." ********** "...I have suffered through Canker sores since being a child and I although I don't know what causes them, I have a fix. I'm not sure if you can get this in Ireland, but hopefully you can. It's a vitamin called L-Lysine. I take one per day and when a canker sore comes on, I take 2-3 per day. I have pretty much been canker sore free for some time. However, I should mention that when I was pregnant, they recommended that I not take this because they didn't know a lot about it. Also, you should know that I do not have Celiac, it is my 15 month old." "Adding l-lysine to the diet w/ help w/ canker sores. It's an essential amino acid. You might not be getting enough (or absorbing enough) from your diet." [I tried l-lysine over and over again through the years and never got any relief from canker sores. Canker sores are not the same as cold sores, and are not the result of a virus, and as I understand it, l-lysine is only useful for treating cold sores. However, I do not have access to case histories and statistics on the effect of l-lysine on either cold sores or canker sores, so I could be dead wrong! Maybe it hasn't worked for me because I can't absorb it. T.J.F.] ********** "The first year I was diagnosed with CD & DH, I attended a conference in Seattle, Washington. I was amazed to learn that the canker sores I had dealt with for most of my life were in any way related to gluten intolerance. The doctor stated that salt with iodine and kelp should be eliminated from the diet. He made a believer out of me! Since eliminating them, I have had only an occasional canker sore." [This is interesting, because the only thing I have found that has helped me clear-up a canker sore which is in the threatening or the very early stages is an iodine compound chemically termed povidone-iodine, and sold in Ireland as Betadine Antiseptic Paint. Its packaging is like that for fingernail polish: a small bottle with a big cap and connected to the cap is a brush which dips into the liquid. It was not me who discovered povidone-iodine for canker sores: I have to credit Dr. Merrill Chernov, whose very expensive version of Betadine can be found described at: www.uspronet.com/joshua/index.html A bottle of Betadine, on the other hand, costs about $3 US. T.J.F.] ********** "I've had a problem with canker sores on my tongue since I was little. I discovered just last year (I'm 43) that nuts and oranges bring them on for me, often within a couple of hours. Small amounts aren't a problem, just when I overdo it. It may be an individual sensitivity just for me....?" [One of my sisters used to have a problem with oranges and orange juice giving her canker sores. So she decided to overwhelm whatever it was that was causing the sores, and she went on an orange juice binge, drinking gallons of it over a couple of weeks. She said that cured the problem. She is also very allergic to fresh-water fish. Salt-water fish are OK. Another of my sisters says that she always gets canker sores after eating walnuts. T.J.F.] ********** "These usually go away after 2 or 3 days of Vitamin B complex and Vitamin C. They are a result of a virus in your body and flare up when sugar is ingested. Most commercial cereals are high in sugar." [As I said above, the general opinion is that canker sores are absolutely not caused by a virus. I've also heard of Vitamin B complex helping with canker sores. But, thanks to this wonderful list, I've learned that celiac disease can cause malabsorption of nutrients. Perhaps intestinal problems can cause malabsorption of some of the Vitamin B family. I've also read that canker sores can be hurried to a cure by taking iron. Isn't malabsorption of iron also an effect of celiac disease? When I was a young adolescent I became very anemic and the doctors who treated me were at a loss for a reason. They ended-up giving me shots of Vitamin B-something and I pulled out of it. Perhaps what I was going through was a symptom of intestinal malabsorption. T.J.F.] **********" "All I can say is that I suffered from canker sores all my life, 5 years ago when I was diagnosed with celiac disease and went Gluten free, and my iron and folic acids levels became normal, I rarely have had any more! (Acutally I only have had 2 canker sores in 5 years, but that was due to when I accidently bit the inside of my mouth and kept biting on it). Now I don't know if the fact that low iron (anemia) was a factor or going gluten free was, or a combination of going gluten free and getting my iron levels back to normal helped or both??" [This comment came in after I had written the earlier comment wondering about malabsorption of iron. Honest. T.J.F.] ********** "The connection has been well described by a group from Trinity about 13 years ago. It is a recognised presentation of celiac disease." [Trinity is Trinity College, Dublin. I'll have to look for the 13 year-old research. T.J.F.] ********** "I don't know right off hand where to find a good reference, but a presenter (a dentist if I remember right) at a celiac conference I attended several years ago discussed a relationship between celiac disease and canker sores. The canker sores were not her primary topic; she was primarily talking about esophegeal cancer. You might want to do some research on this. If true, your canker sores might be as a result of gluten ingestion (I take it you are eating wheat) and might be an indication of celiac disease. ********** "I am also getting mouth ulcers / tender gums and had found that they are assocciated with eating wheat / gluten. Perhaps you should be tested of allergies to find out what is going on with your system." [It seems that there are allergy testing machines in many of the pharmacies in Cork City. They look a little like "weird science" to me, so if I get a test, I'll probably have to go to a medical doctor. T.J.F.] ********** "Are you a diagnosed Coeliac? If so, imbibing ANY gluten will cause mouth ulcers. Beer, lager etc is particularly bad. Also don't eat oats! Or rye! If you are diagnosed, you should be able to get gluten free foods on prescription from your GP." [I'm not a diagnosed Coeliac. I can certainly second the observation that beer and lager is particularly bad. However, I find that some beers don't seem to cause canker sores for me while others are pure poison. I like the thought that I can get gluten-free foods on prescription. Now I will have to see what my insurance company says! T.J.F.]