Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Canker Sores

BadContrakt

By BadContrakt
in Related Issues & Disorders

Recommended Posts

BadContrakt Rookie
BadContrakt
Posted

I'm not around here much because I have my symptoms all under control and I live a normal (but gluten free) life. The only time I come around really is to check if certain foods are safe for me or not.

That being said, I felt I should make this post to help others with my findings. Hopefully someone else that's struggled like I have with canker sores can find some relief with this information.

Some backstory: I was abruptly graced with NCGI shortly after my 22nd birthday. I'm 24 now and with 2 some years of dealing with this diet I've gotten fairly good at it. No symptoms... Except one... Canker sores. My whole life, not just since I got NCGI, but my whole life I have gotten BAD outbreaks of canker cores. Sometimes up to 7-8 in my mouth at one time. I'd get lower lip cankers as big as a shirt button. Just smaller than a dime. I mean... Huge. My lip would swell to double it's size and going to work or seeing family would be so embarrassing. After getting NCGI I found out that it's fairly typical for celiacs to struggle with canker sores. So it seems I was always destined to get celiac of some sort at some point in my life. Thankfully it took until I was 22 and didn't ruin my fun teenage years.

The findings... Let me put it simple and straight forward. I have been doing this for 3 months now and have not had a single canker sore since... I will start to get one maybe after biting my cheek or drinking acidic alcohol or candy, but if I just keep up with my routine it won't develop into an actual ulcer. It will die away.

----------------------------------

SENSODYNE toothpaste. It has 2 qualities that make it a canker sore killer. It does not have Sodium Lauryl Sulphate in it. I won't explain what SLS is, you can look it up if you don't know. And the second quality is it balances residual acid in your mouth. The PH of your mouth, essentially. It's very important to brush thoroughly with Sensodyne after any acidic food or drink.

Lysine supplement. I take 500mg in pill form twice a day. Lysine from what I have read is an amino acid in many foods, especially in wheat based foods, and celiacs lack in lysine levels. What is Lysine? Again, you'll have to look it up lol.

By changing these two things in my life, I have gone 3 solid months without a canker. That is HUGE for me. I hope this information is useful for someone. Here's to 3 more months. Or longer!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted

Wow!  So happy for you.  I am going to pass this on to my SIL who suffers from canker sores.  Thanks!  

Pegleg84 Collaborator
Pegleg84
Posted

I used to get pretty bad ones before going gluten-free as well. Now if I get one it's either cause I bit my lip or because I'm coming down with a cold.

I've been considering switching toothpastes. I didn't know that Sensodyne doesn't have SLS. Nice. I'll look into that (I want a more natural toothpaste but still with flouride)

Glad the diet is working! The fact that you had such an improvement is probably that your body is absorbing more nutrients than before. Maybe you do have Celiac rather than just NCGS? Not sure how much NCSG affects absorption if no villi damage. Just a thought.

 

Posterboy Mentor
Posterboy
Posted

Badcontrakt,

This topic comes up often on this board.

I had to search for it on another thread but  I pointed this out to another poster.

Lysine will help canker sores.  I used it very successfully even before I was gluten free and it still worked.

Now like others mentioned I rarely get them (sores) today but if I do Lysine is at the ready should I need it.

Thanks for sharing.  It is amazing the way something as simple as just one amino acid can help with something so painful.

Swilling with salt water if you can stand it will also help eliminate/heal them in a pinch if Lysine is not easily accessible or don't have Lysine stocked on hand in your home.

It should be noted you need to let your doctor know if you are taking Lysine and he prescribes an antibiotic.  Certain types of  antibotics taken with Lysine could lead to kidney issues especially he doesn't know if you are taking Lysine at the time.

Here is a link that discusses this precaution.

Open Original Shared Link

** this is not medical advice but I hope it is helpful.

posterboy,

BadContrakt Rookie
BadContrakt
Posted
  • Author
11 hours ago, Pegleg84 said:

I used to get pretty bad ones before going gluten-free as well. Now if I get one it's either cause I bit my lip or because I'm coming down with a cold.

I've been considering switching toothpastes. I didn't know that Sensodyne doesn't have SLS. Nice. I'll look into that (I want a more natural toothpaste but still with flouride)

Glad the diet is working! The fact that you had such an improvement is probably that your body is absorbing more nutrients than before. Maybe you do have Celiac rather than just NCGS? Not sure how much NCSG affects absorption if no villi damage. Just a thought.

 

I'm not exactly sure what I have. I don't exactly have strong symptoms of celiac but I do have them. The primary symptoms I get when ingesting gluten is numbness, tingling, insomnia, clouded head, and lack of focus in my vision. It all seems very neurological to me.

Not to say that I don't have celiac though, because I will get a minor stomach ache and fat in stool. I grew up always having heartburn and was always underweight. Still am.

So I really don't know what to tell people I have. I guess I do have celiac. So I have CWOTNSD

(Celiac With Other Terrible Neurological Symptoms Disease)

Thanks for the support guys. Definitely spread the knowledge if you know others that struggle with canker sores!

Ariel90 Rookie
Ariel90
Posted

Yup I've got them for as long as I can remember I don't know if it's celiac or what. I don't know if your male or feamale but I notice during my period I get them more.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,398
    • Most Online (within 30 mins)
      7,748
    Megannnnn
    Newest Member
    Megannnnn
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Coeliac UK Research Conference 2025

      By Scott Adams · Posted

      Thanks for sharing this!
    • Scott Adams
      Shingles - Could It Be Related to Gluten/ Celiac

      By Scott Adams · Posted

      I had the same thing happen to me at around your age, and to this day it's the most painful experience I've ever had. For me it was the right side of my head, above my ear, running from my nerves in my neck. For years before my outbreak I felt a tingling sensation shooting along the exact nerves that ended up exactly where the shingles blisters appeared. I highly recommend the two shot shingles vaccine as soon as your turn 50--I did this because I started to get the same tingling sensations in the same area, and after the vaccines I've never felt that again.  As you likely know, shingles is caused by chicken pox, which was once though of as one of those harmless childhood viruses that everyone should catch in the wild--little did they know that it can stay in your nervous system for your entire life, and cause major issues as you age.
    • trents
      Blood tests low iGA 4 years later digestive issues

      By trents · Posted

      Keep us posted.
    • Clear2me
      Gluten free nuts

      By Clear2me · Posted

      Thanks for the info. I recently moved to CA from Wyoming and in that western region the Costco and Sam's /Walmart Brands have many nuts and more products that are labeled gluten free. I was told it's because those products are packaged and processed  in different  plants. Some plants can be labeled  gluten free because the plant does not also package gluten products and they know that for example the trucks, containers equipment are not used to handle wheat, barely or Rye. The Walmart butter in the western region says gluten free but not here. Most of The Kirkland and Members Mark brands in CA say they are from Vietnam. That's not the case in Wyoming and Colorado. I've spoken to customer service at the stores here in California. They were not helpful. I check labels every time I go to the store. The stores where I am are a Sh*tshow. The Magalopoly grocery chain Vons/Safeway/Albertsons, etc. are the same. Fishers and Planters brands no longer say gluten free. It could be regional. There are nuts with sugar coatings and fruit and nut mixes at the big chains that are labeled gluten free but I don't want the fruit or sugar.  It's so difficult I am considering moving again. I thought it would be easier to find safe food in a more populated area. It's actually worse.  I was undiagnosed for most of my life but not because I didn't try to figure it out. So I have had all the complications possible. I don't have any spare organs left.  No a little gluten will hurt you. The autoimmune process continues to destroy your organs though you may not feel it. If you are getting a little all the time and as much as we try we probably all are and so the damage is happening. Now the FDA has pretty much abandoned celiacs. There are no requirements for labeling for common allergens on medications. All the generic drugs made outside the US are not regulated for common allergens and the FDA is taking the last gluten free porcine Thyroid med, NP Thyroid, off the market in 2026. I was being glutened by a generic levothyroxin. The insurance wouldn't pay for the gluten free brand any longer because the FDA took them all off their approved formulary. So now I am paying $147 out of pocket for NP Thyroid but shortly I will have no safe choice. Other people with allergies should be aware that these foreign generic pharmaceutical producers are using ground shellfish shell as pill coatings and anti-desicants. The FDA knows this but  now just waits for consumers to complain or die. The take over of Wholefoods by Amazon destroyed a very reliable source of good high quality food for people with allergies and for people who wanted good reliably organic food. Bezos thought  he could make a fortune off people who were paying alot for organic and allergen free food by substituting cheap brands from Thailand. He didn't understand who the customers were who were willing to pay more for that food and why. I went from spending hundreds to nothing because Bezo removed every single trusted brand that I was buying. Now they are closing Whole foods stores across the country. In CA, Mill Valley store (closed July 2025) and the National Blvd. store in West Los Angeles (closed October 2025). The Cupertino store will close.  In recent years I have learned to be careful and trust no one. I have been deleberately glutened in a restaurant that was my favorite (a new employee). The Chef owner was not in the kitchen that night. I've had  a metal scouring pad cut up over my food.The chain offered gluten free dishes but it only takes one crazy who thinks you're a problem as a food fadist. Good thing I always look. Good thing they didn't do that to food going to a child with a busy mom.  I give big tips and apologize for having to ask in restaurants but mental illness seem to be rampant. I've learn the hard way.          I don't buy any processed food that doesn't say gluten free.  I am a life long Catholic. I worked for the Church while at college. I don't go to Church anymore because the men at the top decided Jesus is gluten. The special hosts are gluten less not gluten free. No I can't drink wine after people with gluten in their mouth and a variety of deadly germs. I have been abandoned and excluded by my Church/Family.  Having nearly died several times, safe food is paramount. If your immune system collapses as mine did, you get sepsis. It can kill you very quickly. I spent 5 days unconscious and had to have my appendix and gall bladder removed because they were necrotic. I was 25. They didn't figure out I had celiac till I was 53. No one will take the time to tell you what can happen when your immune system gets overwhelmed from its constant fighting the gluten and just stops. It is miserable that our food is processed so carelessly. Our food in many aspects is not safe. And the merging of all the grocery chains has made it far worse. Its a disaster. Krogers also recently purchased Vitacost where I was getting the products I could no longer get at Whole Foods. Kroger is eliminating those products from Vitacost just a Bezos did from WF. I am looking for reliable and certified sources for nuts. I have lived the worst consequences of the disease and being exposed unknowingly and maliciously. Once I was diagnosed I learned way more than anyone should have to about the food industry.  I don't do gray areas. And now I dont eat out except very rarely.  I have not eaten fast food for 30 years before the celiac diagnosis. Gluten aside..... It's not food and it's not safe.  No one has got our backs. Sharing safe food sources is one thing we can do to try to be safe.        
    • Mmoc
      Blood tests low iGA 4 years later digestive issues

      By Mmoc · Posted

      Thank you kindly for your response. I have since gotten the other type of bloods done and am awaiting results. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.