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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Canker Sores
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I have had canker sores ever since I was a little kid. Recently (past 6-9 wks) I have at least one if not several at a time. In doing some research on canker sores I have found that the is a connection with celiac disease. My other symptoms that could be related are abdominal pain and bloating, gas, fatigue, muscle aches, mental fog, depression, anxiety, sleep problems. I also have PCOS which can cause a lot of the same stomach and fatigue issues. I recently had my labs done and my CRP was 29! My Dr did not think much of it due to the fact that at that time I was eating way to many carbs for someone with PCOS. Long story short, has anyone else had issues with canker sores? I can not get back to the Dr until mid March and am trying to plan what I will address with him. Thanks for any input

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My daughter (who refuses to get tested for celiac) has been plagued with canker sores her entire life. They became especially troublesome in her teen years, and her dentist told me, "These aren't normal canker sores. Your daughter has some type of auto-immune disease." My mother, son, and I all have celiac....and my daughter has been diagnosed with IBS of the small intestine. I strongly suspect that the canker sores are the result of celiac.

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Yes, I have had cancker sores. When I asked doc if there was anything I could do for them he told me there was not. Online info said to avoid toothpaste with a certain ingredient which my toothpaste did not have so I figured it wasn't the toothpaste. I found another site that said to take 1000 mg of l-lysine daily, treid that and it worked in just a matter of days. As soon as they went away I stopped the lysine and so far (crossing my fingers) they ahve not come back!

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I have had canker sores ever since I was a little kid. Recently (past 6-9 wks) I have at least one if not several at a time. In doing some research on canker sores I have found that the is a connection with celiac disease. My other symptoms that could be related are abdominal pain and bloating, gas, fatigue, muscle aches, mental fog, depression, anxiety, sleep problems. I also have PCOS which can cause a lot of the same stomach and fatigue issues. I recently had my labs done and my CRP was 29! My Dr did not think much of it due to the fact that at that time I was eating way to many carbs for someone with PCOS. Long story short, has anyone else had issues with canker sores? I can not get back to the Dr until mid March and am trying to plan what I will address with him. Thanks for any input

Yes! I've had those little white canker sores since I was a kid too. I always thought it was from a herpes virus 'til just yesterday I read about them being tied to celiac. I would also get swollen lymph nodes just under my jaw on whatever side of my mouth had the sore. I always got them on my inner lip or gums. I thought I was just weird all these years with all the odd pains I sometimes get but now maybe I will have an answer. What other symptoms do you have, if any, that seemed weird to you until you linked them to celiac?

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Yes! I've had those little white canker sores since I was a kid too. I always thought it was from a herpes virus 'til just yesterday I read about them being tied to celiac. I would also get swollen lymph nodes just under my jaw on whatever side of my mouth had the sore. I always got them on my inner lip or gums. I thought I was just weird all these years with all the odd pains I sometimes get but now maybe I will have an answer. What other symptoms do you have, if any, that seemed weird to you until you linked them to celiac?

Yes. I got them a lot too. I've only been gluten free a short time but no canker sores since going Gluten-free. I did also switch to the a toothpaste without SLR because I was so fed up with the painful mouth sores and trying everything. I use Pronamel toothpaste.

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My son had frequent canker sores that started as a toddler -- until he went gluten free at 15. Three years later -- he now only has them on rare occasion -- just prior to a cold/flu bug.

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I usually take the L-lysine 500mg twice a day because your body can not digest 1000 mg at a time. This used to help me in high school, but not touching me now. As far as my other symptoms: tired ALL the time, insomnia, hungry all the time- even after eating a full meal, headaches, mind fog, adbominal pain, bloating, constipation. I also have PCOS and have 2 small children, work full time, and am in full time grad school. I have been blowing off the symptoms thinking they were all related to that. I have had many stressful events in my life, but have never had constant canker sores. Recently I was put on a low carb "lifestyle" change for my PCOS and that has made a difference with my abdominal pain and bloating. I am not really strict, I am just more mindful of not eating breads and pasta. I see my Dr this week and was going to talk to him about it. Last year when I had my labs checked my c-RP was 29!! that can happen with PCOS, but it is a little scary to me considering I am only 33. What other tests should I ask for?

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I usually take the L-lysine 500mg twice a day because your body can not digest 1000 mg at a time. This used to help me in high school, but not touching me now. As far as my other symptoms: tired ALL the time, insomnia, hungry all the time- even after eating a full meal, headaches, mind fog, adbominal pain, bloating, constipation. I also have PCOS and have 2 small children, work full time, and am in full time grad school. I have been blowing off the symptoms thinking they were all related to that. I have had many stressful events in my life, but have never had constant canker sores. Recently I was put on a low carb "lifestyle" change for my PCOS and that has made a difference with my abdominal pain and bloating. I am not really strict, I am just more mindful of not eating breads and pasta. I see my Dr this week and was going to talk to him about it. Last year when I had my labs checked my c-RP was 29!! that can happen with PCOS, but it is a little scary to me considering I am only 33. What other tests should I ask for?

Sorry to have to ask, but what is CRP? Regarding the PCOS, you might want to research iodine deficiency. Some doctors claim that's what causes PCOS as well as fibrocystic breasts and thyroid issues. Celiac may have something to do with those things as well, so the iodine is kind of a whole other topic but these doctors say thay have cured these things with iodine supplementation.

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Canker sores ? Is that the same as mouth ulcers? I had no idea it could be related to Celiac....I've never had them before, this past week I've been struggling with them inside my cheeks, tongue and palate.....Very hard to eat with this.....The pharmacist told me to use Peroxyl mouthwash.

Besides all the other symptoms like diarrhea, abdominal pain, muscle cramping and weight loss; how miserable does one have to get to start feeling better? I think depression is setting in because of lack of sleep. Guys, this is miserable.

Sorry to be such a crybaby.

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Sorry to have to ask, but what is CRP? Regarding the PCOS, you might want to research iodine deficiency. Some doctors claim that's what causes PCOS as well as fibrocystic breasts and thyroid issues. Celiac may have something to do with those things as well, so the iodine is kind of a whole other topic but these doctors say thay have cured these things with iodine supplementation.

C-RP is c- reactive protein. Normal is 0, 3-5 is a mod risk for heart disease and >5 is a high risk for heart disease. It signifies inflammation and atherosclerosis. My thyroid has always been in the normal range. I have never heard of iodine def causing PCOS. It is caused by insulin resistance and endocrine problems. I will check into the iodine deficiency theory.

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I had canker sores my entire life. I'm kind of a research nerd, so I've spent a lot of time looking into it. Prior to my own diagnosis, I came across research indicating a zinc and B vitamin deficiency as a possible culprit, along with sodium lauryl sulfate in toothpaste. I did take supplements for a time, but once I eliminated gluten, I had no more canker sores at all. I continue to use sls-free toothpaste (Xyliwhite by NOW) because sls isn't something we should be putting in or systems anyway. I can see the vitamin deficiency being a possible secondary cause, since there is a related absorption issue. But to further back this up, I just recovered from slowly glutening myself over the course of months. Once it reached critical mass, my face, head and shoulders erupted in painful blemishes, which I'd been prone to my whole life, but never bothered to look up until this time I also broke out in the tell-tale stomach rash. Most relevant to your post though, I got a couple of canker sores too. They began healing immediately and went away once I identified the hidden offender (wish I could say the same for the dh around my hairline!) I hope this helps.

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I usually take the L-lysine 500mg twice a day because your body can not digest 1000 mg at a time. This used to help me in high school, but not touching me now. As far as my other symptoms: tired ALL the time, insomnia, hungry all the time- even after eating a full meal, headaches, mind fog, adbominal pain, bloating, constipation. I also have PCOS and have 2 small children, work full time, and am in full time grad school. I have been blowing off the symptoms thinking they were all related to that. I have had many stressful events in my life, but have never had constant canker sores. Recently I was put on a low carb "lifestyle" change for my PCOS and that has made a difference with my abdominal pain and bloating. I am not really strict, I am just more mindful of not eating breads and pasta. I see my Dr this week and was going to talk to him about it. Last year when I had my labs checked my c-RP was 29!! that can happen with PCOS, but it is a little scary to me considering I am only 33. What other tests should I ask for?

My daughter's canker sores were debilitating enough that her physician eventually sent her to Mayo Clinic for a diagnosis--iron malabsorption. Her ferritin, % of saturation and iron levels were way out of the normal range. When she gets a supplement that she can absorb, her canker sores are gone. Yes, I know, it screams to me of a gluten problem, but her celiac panel was negative. You don't argue with Mayo.

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    • Weird Reaction
      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
    • Weird Reaction
      Hi Richie,  I've not heard of this drink before, as I live in the UK, but any drink made from barley is something you should avoid.  There's a brand in the UK that makes lemon and barley water and orange and barley water and Coeliac UK say it is not safe for people with Coeliac disease.  (Our labelling laws in the UK changed a couple of years ago).  You say the drink you had was under 20 ppm, which is acceptable (usually) for coeliacs, but a lot of people are super-sensitive to gluten even in very small amounts.  I recently had a similar problem with something which was supposed to be okay for coeliacs, but when I checked the website of the product, for all it said there were no gluten containing ingredients, it was produced in an area where gluten was present, which was enough to put me off and must admit, the symptoms you describe sound very much like I experienced at the time.  (Personally I'd be avoiding that particular drink like the plague from now on). One other thing though,  have you checked the ingredients to see if there could be anything else in it which you may be intolerant to? 
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      I have not. I'll talk to my doctor about it
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