Mouth Sores

[Guest jhmom]

Hi to all, I have a question for you: I have been gluten-free for over 3 months (with only a few mistakes here and there). I know that mouth sores are a symptom of celiac disease and happen often before we go gluten-free, but are we still going to have them even after we are gluten-free? I have a huge one, it is swollen and hurts worse than any other one has ever hurt before . I have used warm salt water and my husband bought me some Orabase at the drug store on Friday and I have seen NO improvements.

Has anyone else experienced this and if so what medicine did you use to get rid of it and help with the pain?

[midnightjewel40]

you poor thing maybe you need to go to the docs and get something stronger stay off any aciddy stuff and if your anything like me i tend to bite mine not thinking then its worse

you should get some relief soon i hope hang in there

jacque

[gf4life]

Hi Stacie,

First, it has only been three months, and the healing process takes time, so expect some symptoms to occasionally show their ugly heads! Second, is it possible that you may have gotten some hidden gluten? It hides in the strangest places. Third, other foods can cause reactions like that as well, so you may want to see if there is something else your body reacts badly to if you keep getting these mouth sores. I have gottent hem off and on all my life, and strangely enough I have not had any during this gluten challenge that I have been on, but I also have not eaten any acidic fruits, and have only had a little bit of tomato sauce on pizza. I was contemplating whether or not any of those things were causing some of my symptoms. I'll have to check again after I'm totally gluten-free for good at the end of this month. Good luck, and sorry I can't help you with any medications, since I never used anything stronger than the over the counter stuff you are using.

God bless.

Mariann

(p.s. How did you get your signature to come out the way it does? I keep trying, but it never comes out the way I want. Too small even though I've tried to change the font size...)

[Guest jhmom]

jacque: Thank you, I think I will go to the doc tomorrow or at least call them or my dentist. I think I may need something stronger than warm salt water or over the counter stuff.

Mariann: Yeah I thought about the amount of time being gluten-free and I know I have had a few slip ups here and there, none I can think of that may have brought on the mouth sore though. I don't eat much fruit and I do eat spag sauce on a weekly basis and I don't think it has caused me a problem in the past. Guess I should keep up with another food diary huh? I have also been having some serious miagraine headaches too so I will be keeping up with those too. On another note, I designed my signature then highlighted the section where I wanted to change the font size and then highlighted the entire signature for the color. Hope you can get it to work!

Thanks to you both for your reply and suggestions!

[tonileet]

Hi Stacie,

Ouch! I know exactly what you're going through and I've been wondering the same thing. How long do we have to be gluten free before we'll have NO more mouth sores? I'm still getting them after almost 6 months of being gluten free. The worst outbreak in the past 6 months was due to accidental ingestion, but most of them just seem to happen no matter what. I chock it up to a lengthy detoxification process. At least, I hope that's what it is and that it will eventually stop happening.

But for now...let's see if I can help you deal with your monster mouth sore. Here are some things that have helped me. First of all, as Jacque says, stay away from acidic foods. And don't eat any avocado! I once ate an avocado thinking that it would be soft and soothing and it burned like heck! But do stick to soft foods. And cool or cold foods rather than hot ones. A smoothie with gluten-free rice or soy milk and non-acidic fruit might feel good. An ice cube placed directly on the sore will give some relief, too. I remember doing that during my very worst outbreak, when even my tongue was covered with sores.

As for medications.......during my very first outbreak, my physician at the time suggested that I rinse my mouth with arnica tincture mixed in a little water (I could hardly believe that my allopathic doctor was suggesting an herbal treatment!) I bought the tincture at my local health food store, mixed a teaspoon of it in a small amount of water, rinsed for a minute or two and then spit it out several times a day. I think it actually did give me some relief but it wasn't enough to handle the severity and extent of the outbreaks that followed.

I eventually ended up seeing an oral pathologist who prescribed an ointment that works quite well. The up side is that it keeps me from having to take prednisone, which I took more times than I care to remember. The down side is that it is a steroid medication, but at least it's topical not systemic. It's a "compounded" prescription, which means that it is mixed by the pharmacist, and my oral pathologist warned me that some pharmacists don't like doing it, but I didn't have any trouble. It's a mixture of the steroid clobetasol and the over-the-counter medication Orabase B. You just spread a little bit of it on the mouth sores (with one of those long Q-tips) and don't eat or drink anything for an hour. The clobetasol decreases the severity and duration of the mouth sores and the Orabase B numbs them. You can use the ointment 3 or 4 times a day. The oral pathologist told me not to wait until the sores become unbearable. He said to use it as soon as I felt a sore coming on. I still keep some on hand and use as little as possible. If you decide to see a doctor or dentist, you might want to mention this to her/him.

My mouth sores tend to last about a week, but it can feel like SO much longer! I know that gluten causes them but I've also been wondering lately if there are other foods that trigger them as well. Just the thought of citrus makes me cringe so I don't eat it. I used to think that tomatoes were a problem but now I don't think so. It's the pasta not the sauce! I'm very good about keeping a food diary and sometimes I just sit staring at it wishing that the culprit will magically highlight itself!

I'm so sorry that you're in pain and I hope that you find some relief soon. Please let us know how it all turns out. Sincerely, Toni

[seeking-wholeness]

Hi, Stacie!

It's funny, I'm sitting here with the first canker sore I've had in several weeks, and I'm not sure exactly what caused it. I know I have gotten quite a bit of gluten contamination in the past week (visiting the family, who believe in a "non-disclosure" policy regarding bread and cookie crumbs, and eating out four times while traveling), so that's probably it, but I can't help wondering if nightshade vegetables might be responsible. I'll have to keep track of that possibility. I haven't used anything on this sore, since it's not driving me crazy, but I think I remember that holding a wet teabag against a sore can help (although I'm sure it would taste awful!). My sores tend to last seven to ten days, so I'm over the worst of this one, but I can't wait until it's gone!

I hope you feel better soon!

--Sarah

[Guest jhmom]

Toni: Thanks for the great suggestions. I called my dentist today and they could not do anything for me, they suggested I keep doing what I have been doing (warm salt water and Orabase) and said there is another medication out there called Abreva, if I wanted to try it.

I too try to stay away from citrus fruit too but I do drink a lot of Cola's (i.e. Coke and Mt Dew). Do you think that could be the culprit? I sure hope not!

Sarah: Most of my sores are a pain to have, but NOTHING like this one. THe pain and swelling really had me worried but when I called the dentist they said it was normal and that it could last up to 14 days. I told her I didn;t think I could handle this pain for another 7 days! I may try the tea bag thing if I can stand the taste

Thanks to everyone for your suggestions! I am so happy I found this board and your support!

[tonileet]

Hi Stacie,

I quit drinking soda more than 20 years ago, but when I did, Coke was my favorite. I don't know the ingredients in Coke or Mountain Dew but I do remember hearing when I was a kid that "coke will take the rust off your car". Now I don't know if there's any truth to that, but it if does, I don't even want to think about what it might do to the tissue inside one's mouth! Since you drink a lot of colas, are gluten-free, and are still getting mouth sores, you could eliminate the colas for a while and see if it makes any difference. If it does, drink some colas again to test it out.

Hopefully your mouth sore has peaked out and the pain is diminishing. I'm always so relieved when I reach that point.

I, too, am delighted to have found this message board. The support feels SO good!

Take care - Toni

[Guest jhmom]

Toni:

Yeah I have heard that same thing about coke, don't know if it's true or not. I am totally addicted to coke and Mt Dew, since all these GI problems started that has been the only thing that settles my stomach.

I read the ingredients in Mt Dew, there is citric acid, concentrated orange juice, erythorbic acid, along with other ingredients, I think one of these could be the culprit, ya think?

[bigapplekathleen]

Hi everyone -

It's interesting to read this new discussion! I have been gluten-free since Sept 1. I used to get HORRIBLE mouth sores. Once, after a bad bout with an antibiotic, I had over ONE HUNDRED SORES in my mouth. I couldn't eat, and frankly, could barely swallow water. The more typical case was 5-10 sores at a time on the inside of my mouth and usually a couple on my tongue. The doctors have given me a couple of solutions over the years. One was a swish and spit formula prescibed by my hematologist; he usually gives it to his chemo patients when they get sores. It contained so many different things. another one was a numbing gel - like lidocaine - that I swished and spit. However, it numbed my mouth so much that I felt like I couldn't breathe or swallow correctly. It was scary.

however, since being gluten-free, I have only had sores on two occasions. Once was when I accidentally got gluten after eating in a restaurant (and boy, was I sick!). And the other time is NOW. UGH ! I have had a few in my mouth for the past couple weeks - small ones, albeit, aggravating and a bit of a discomfort. I have also had horrible headaches lately. The one I have now started nearly a week ago and hasn't let up, though it is very mild. All I can think of are two things: I just had in-laws here and the possibility of cross-contamination from their food was very high and ther other possiblity: I have been drinking a lot of coke again. (I quit drinking it completely in August until mid-November, during which time I had NO mouth sores.)

It's interesting to think of a link between those things. My guess is that it's more likely the coke than the gluten. I am back off the coke now for good, but that's a tough call to make in the middle of a headache like this one! The one thing I do realize though is that there is absolutely no value to coca-cola; it's just expensive sugar water. (Very addictive, though.)

kathleen

[tonileet]

Hello,

Very interesting discussion, indeed. Kathleen, I'm so happy to hear that you've had so few mouth ulcers since going gluten-free. The first couple of years that I had them, my doctor said that he'd never seen a case as severe as mine in anyone that wasn't receiving chemotherapy. Unfortunately, I have experienced the "100 sore outbreak". I also could barely drink water and it was VERY scary. And I swished with lidocaine. That stuff is gross and doesn't even last very long! I consulted with several health care providers and NOT ONE advised me to stop eating gluten. Thanks for sharing your story. I sure wish that this wasn't happening to any of us, but in a very twisted way, it's comforting to know that this actually happens to other people. And how wonderful it is that we're here trying to help each other.

It certainly sounds like cross-contamination could be the trigger of your current mouth sores, but now I'm also wondering about soda. You're right about it having no nutritive value and being addictive. I drank Coke for years, until I just couldn't handle the caffeine anymore. But that was years before any celiac disease symptoms surfaced. Now I'm curious about the ingredients in Coke. I'll have to check out the label at a store.

Stacie - as for the Mountain Dew.....citric acid? concentrated orange juice? erythorbic acid - what the heck is that? All of them sound suspicious to me. I do think it would be worth it to not drink any soda for a while and see what happens. Do you like tea? Maybe peppermint or ginger tea (make sure it's gluten-free!) would settle your stomach. Let us know if you learn anything new.

Take care - Toni

[Guest jhmom]

Kathleen & Toni: 100 SORES?? WOW!!! That is terrible, you poor thing! I can understand the worry you both had over that, I would be scared too. I usually get 1 or 2 at a time but none as bad as this one (pain and swelling).

I think the Coke and Mt Dew are the culprits because when I drink it now it tends to burn a little. So, when I have a few days with nothing to do I will have to come off the caffenie. Kathleen, like you I have been suffering with some terrible headaches almost on a daily basis and coming off caffenine I know I will have one for a couple of days.

[gf4life]

Wow, this whole topic got me started thinking about this old boyfriend I had in college. He had an outbreak of like "100 sores" in his mouth and they gave him lidocaine to swish with, it barely took the edge off long enough for him to eat! He was irish and I now wonder if he may have had celiac disease. He certainly had many other symptoms as well...

Mariann

[kejohe]

Okay guys, here is my miracle cure... actually two miracle cures depending on where the sore is.

If you have a sore on the inside of your mouth, the best thing I have found to cure it in a day or less is "Alum", it's a spice that is white and powdery, like baking soda. I will warn you though, it makes all the infection seep out so it gets a little nasty for a little while. When you first put it on, let it sit for about 1 minute, then rinse it off, your skin will get puckery like you have sucked on a lemon wedge. repeat every hour 3 or 4 times and the next day you'll be much better.

If you have a sore on the Outside of your mouth, like around the lip area, use chickweed. Yes, I mean the weed everyone tries to pull out of their gardens with a vengance. I know it sounds really crazy, but I used to teach wilderness medicine to kids and this was one of the best things I found. Mash a few leaves into a paste and glue it to the sore. (you'll need to call in sick for work to take care of this, or you can do it overnight) Leave it on for a while, you can tape a bandaid over it to keep it in place, it will allow all the infection to seep out. Repeat for several hours, leaving the paste on and the next day, you'll be on the road to recovery. A lot of my friends have used this to get rid of acne as well.

Good Luck to all of you and I hope that you are all looking like this in no time.

[svalexis]

One of the best treatments for mouth sores is taking the amino acid L-lysine 500 mg. 3x a day.

Mariann, go to My Controls and you can change your signature, and whatever, there.

[Susan123]

Here is a thought. Do you use Tartar Control Toothpaste? Tartar Control toothpaste is FAMOUS for causing mouth sores. I used to get them all the time and then someone told me about it and I stopped. No mouth sores for 2 years!!.

[Guest jhmom]

Susan:

Yes, as a matter of a fact I do! That is very interesting, I wonder what is it that causes them??

Thank for the great info!

[Susan123]

I am not sure of the exact reason but I found this excerpt from a medical forum. (see below paragraph) It can't hurt to try it. Also, look at your toothpaste that you are using. This website says that they believe all are gluten free and I have found that not to be true. I recently had teeth whitening done and I had to use a toothpaste that decreased sensitivity. I know that Sensodyne is not gluten free but Aquafresh sensitivity made by the same people is gluten free. I use Crest regular paste and it is suppose to be gluten free with no irritants.

Perhaps up to 80% of canker sores may be prevented by using an irritant-free toothpaste. Detergents (sodium lauryl sulfate and cocamidopropyl betaine), tartar control agents (pyrophosphate), bleach (calcium peroxide and hydrogen peroxide) and flavor (cinnamon and spearmint) may be to blame.

[bigapplekathleen]

Just a warning - if you use the ALUM that KEJOE recommended - it will make you feel really dry and gross - like all the juice is being sucked out of you! I used to use that stuff all the time when I was in college (because I had so many sores back then). However, it really works to dry up a canker sore quicker than the normal 10 days they take to fade away.

It's interesting to know that others have experienced sores like I had - a hundred at a time. the pain was intense. I certainly couldn't sing (i am a pro singer) and had great difficulty speaking. eating was out of the question.

Now, those huge bouts with sores simply don't happen. However, my itching is driving me crazy! i am supsecting DH at this point. Had a bone scan today, since I have shrunk 2 inches in the past couple years...

[Guest jhmom]

Finally after about 10 days this sore is finally fading! I was finally able to eat and talk tonight without pain!

I sure hope I don't get another one like that! I think I will try to elminate the Coke's and Mt. Dew's. It's going to be hard but I think it will be worth it in the end. I'm not much of a water or tea drinker so I will have to find something or learn to like water.

I normally use Crest tarter control and thinking about it I recently switched to tarter control with baking soda and peroxide. Unfortunately I do not have the box it came in and for some reason it does not list the ingredients on the actual tube, so I will be at the store tomorrow looking for new toothpaste!

Thanks to all for the GREAT suggestions I am very happy to have found this site.

[mamaria]

I have been a celiac for about 4 years now and I was the queen of mouth sores before my diagnosis! I am a dentist and believe me I have tried every Rx and OTC product out there-nothing helped except stuff that temporily numbed the lesions. Since going on a gluten free diet I have not had one ulcer in my mouth!!! Kenalog with Orabase a prescription product containing steroids(topical only) is probably the best for the intraoral sores. I have gained thirty pounds since changing my diet which is the only bad part of this whole thing-I never had intestinal problems, weight loss or skin problems before the diagnosis so it took 4 years to figure out what was wrong. My major symptom was a very mild stroke (TIA) due to an undiagnosed clotting disorder which only is a problem if you become B deficient. My vit B and iron were so low they first thought I had cancer! I now have a tentative diagnosis of rheumatiod arthritis as well as celiac disease. I felt 20 years younger as soon as I changed my diet but within a year I developed severe joint pain. My doctor told me just recently that because I have one autoimmmune disease I am at higher risk for another so I guess the fun never ends. If you still feel bad and are following your diet be sure to get checked for other AI diseases- could be something else besides the celiac disease that is causing the symptoms! --- Ibuprofen to bring the tissue swelling down , Kenalog with Orabase on the lesion and a Rx for something callled "Magic swizzle" (LIDOCAINE< BENADYRL>MALOX) to rinse with, will numb and coat the lesions so you can eat- is my recommendation Sorry for the bad typing I stink at this computer stuff. PS-DON'T USE TARTAR CONTROL TOOTHPASTE! CAN CAUSE PROBLEMS IN NORMAL PEOPLE!

[ronrama]

Hi This is my first time on this site. I was diaganosed with celiacs 10 months ago and have been following a gluten-free diet since. my health is so much better that it has made this difficult diet bearable. One of the problems I just relized I havent had since I have been gluten-free is what I always called a "sore Tongue" I tried explaining it to doctors and dentists for years but no one ever knew what I was talking about. It would feel like my tongue was ripped or torn and it would hurt to talk, swallow and eat. It usually lasted a week but there were no visible signs of anything on my tongue. Has any one else ever had any thing like this?

Ronni

[seeking-wholeness]

Ronni, I've never had that symptom, but I am almost positive that it is caused by a vitamin deficiency--probably one of the B vitamins. Now that you have been gluten-free for a while, you must be absorbing more nutrients from your food. Good for you!

[ronrama]

Sarah, Thanks for replying to my Sore Tongue mystery. Before I knew about celiac disease I always thought it could have been caused by a vitamin deficiency so I used to load up on all types of vitamins and minerals. Isn't it ironic that I probably wasn't absorbing most of them. Now that I know I"m GI all I take is Calcium with D since I also found out I have osteopenia. Hopefully it won't progress into full-blown osteoporosis. Ronni

[DMCrawford]

Hi, Right now I'm having an awful outbreak of canker sores, probably 20 -30 under my tongue My husband is a dentist and he wrote me a prescription for Lidex/orabase cream 0.5. It works wonders. First it numbs the area and makes the outbreaks bearable and it helps to heal them a little faster. Talk to your dentist or doctor and have them write you a prescription to keep on hand for those miserable outbreaks.

PS I think my outbreak started because I was using Advil?! GOOD LUCK!