Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

BadContrakt

Recommended Posts

BadContrakt Rookie

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

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

Pegleg84 Collaborator

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

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
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

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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to Travel Celiac's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Test says no, but body says Yes?

    2. - Scott Adams replied to DMCeliac's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Canned tomato sauce, ricotta?

    3. - PlanetJanet replied to Travel Celiac's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Test says no, but body says Yes?

    4. - PlanetJanet replied to PlanetJanet's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Modified Food Starch

    5. - PlanetJanet replied to PlanetJanet's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Modified Food Starch


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,715
    • Most Online (within 30 mins)
      7,748

    Delores M Harris
    Newest Member
    Delores M Harris
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.6k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      @PlanetJanet, Sorry to hear about your back pain.  I have three crushed vertebrae myself.  I found that a combination of Thiamine, Cobalamin and Pyridoxine (all water soluble B vitamins) work effectively for my back pain.  This combination really works without the side effects of prescription and over-the-counter pain meds.  I hope you will give them a try. Here are articles on these vitamins and pain relief... Mechanisms of action of vitamin B1 (thiamine), B6 (pyridoxine), and B12 (cobalamin) in pain: a narrative review https://pubmed.ncbi.nlm.nih.gov/35156556/ And... Role of B vitamins, thiamine, pyridoxine, and cyanocobalamin in back pain and other musculoskeletal conditions: a narrative review https://pubmed.ncbi.nlm.nih.gov/33865694/
    • Scott Adams
      Here is the info from their website. If you don't trust them, you may find products that are labelled "gluten-free," but I don't see any reason to believe there is any gluten in them. Hunt's Tomato Paste: https://www.hunts.com/tomato-sauce-paste/tomato-paste   Hunt's Tomato Sauce: https://www.hunts.com/tomato-sauce-and-paste/tomato-sauce  
    • PlanetJanet
      Hi, trents, Thanks for responding! One book I read is called, Doing Harm, by Maya Dusenbery.  She has wonderful perspective and insight, and it's all research-based.  It's about how women can't get treated.  Everyone should read this!  I wouldn't mind reading it again, even.  She believes that women are so busy taking care of families, working, etc., that we are more likely to ignore our pain and symptoms for longer.  Men have women bugging them to go to the doctor.  Women don't have anyone telling us that.  We don't have time to go.  Providers think we are over-emotional, histrionic, depressed, have low tolerance to pain...Men get prescribed opioids for the same symptoms women are prescribed anti-depressants.  My car crash in January 2020 made going to the doctor a full-time job.  I grew up with 2 rough and tumble brothers, played outside, climbed trees.  I was tough and strong, pain didn't bother me, I knew it would heal.  But do you think I could get treated for back pain--as a woman?  I am so familiar now with the brush-offs, the blank looks, the, "Take your Ibuprofen," the insinuation that I am just over-reacting, trying to get attention, or even, "Drug Seeking."  Took almost 2 years, but what was happening was Degenerative Sacroiliitis.  I couldn't walk right, my gait was off, effected my entire spine because gait was off.  I had braced myself with my legs in a front-impact, slightly head-on crash with someone who made a left turn in front of me from the opposite direction.  I finally had SI Joint Fusion surgery, both sides.  It's not a cure. I have given up on trying to get properly treated.  There is so much pain with these spine issues caused by bad gait:  scoliosis, lithesis, arthropathy, bulged disc, Tarlov cysts.  And I can't take anything because of my bad tummy. Not that I would ever hurt anyone, but I can relate to Luis Mangione who couldn't get treated for his back injury. I feel so alone.
    • PlanetJanet
      They say maltodextrin is gluten-free, even if it's made from wheat, because the gluten is processed away.  It makes no difference to my body.  I still get uncontrollable flatulence and leakage.  Happens every time, even if I refuse to believe it will happen.  Once I was taking Gas-X chewables to hang around with people I was visiting and staying with, to make sure I would feel safer and more comfortable.  WRONG.  I forgot to read the label. I didn't realize it till after I left and went home--MALTODEXTRIN.  I was miserable the whole time. The second gastroenterologist I saw made the tentative diagnosis of microscopic colitis.  Usually occurs in women over 60, I was 59, had been in a crash, (2020) was taking alot of NSAIDS, muscle relaxants.  Had constant diarrhea, gas, leaking.  Unbearable, and I didn't know it was NSAIDS.  I was scheduled for two-way endoscopy, mouth to butt, but they wanted $2,000 up front.  Finally, had a colonoscopy in 2022, 10 biopsies, didn't find a thing!  MC can go into remission, which I was, of course, desperate to do.  No more NSAIDS, tried to cut down on all the other pain killers, everything, chemicals that I knew triggered me.  So, no, they didn't find anything.  So sad that we have to make ourselves sicker and more injured to get a proper diagnosis! Microscopic colitis is being seen concurrently with gluten problems.  MC can be triggered by NSAIDS, SSRI's, all kinds of things. https://my.clevelandclinic.org/health/diseases/17227-microscopic-colitis Some links for maltodextrin health effects: https://pmc.ncbi.nlm.nih.gov/articles/PMC6409436/#:~:text=Altogether%2C these findings show that,the development of intestinal inflammation. https://www.mdedge.com/internalmedicine/article/193956/gastroenterology/maltodextrin-may-increase-colitis-risk  
    • PlanetJanet
      Titanium dioxide is that chemical in vitamins, toothpaste, and processed white foods that is the whitener for the pill coloring.  It is inflammatory for me.  I have an intestinal reaction to it, every time. https://www.webmd.com/diet/titanium-dioxide-in-food https://pmc.ncbi.nlm.nih.gov/articles/PMC11295244/#:~:text=EFSA concluded that titanium dioxide,uncertainties in recent toxicological studies.
×
×
  • Create New...