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

Mouth Sores


Guest jhmom

Recommended Posts

lovegrov Collaborator

Matt,

The Irish have either the highest or one of the highest rates of celiac in the world.

Celiac blood tests and biopsy are not infallible. I've read posts from any number of people with all the symptoms who had negative tests but got much better after going gluten-free. Has your wife had the blood tests? If not she should do that. She needs the Iga, total Iga, Igg and ttg. When she has the biopsy they need to take at least 10 samples from different areas. Damage can be patchy so if they take just a copule of samples they can miss it. In addition, some people won't diagnose celiac unless the villi are completely flat. Some experts now believe you should diagnose if the villi are just blunted.

richard


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



Celiac.com Sponsor (A8-M):



  • Replies 59
  • Created
  • Last Reply
kabowman Explorer

I went gluten-free 8-12 weeks before being tested, my GI doc only took 3 samples and he just said no to celiac disease. I do however, have ALL the symptoms. My oldest son was given the blood test (due to stomach problems and his doc automaticlly ran the test when I told him my problems) which came back negative.

I live gluten, corn, soy bean, peanut, lactose/casien, MSG, and vinegar free. I still have something else bothering me and I think it is in my meds...

Good luck...

-Kate

red345 Apprentice

A study of 330 patients with recurrent canker sores revealed 15-20% were deficient in iron, folate, vitamin B12, or a combination. When the patients' deficiencies were corrected, the majority had complete remission.

Watch out with the serum B12 test. Two years ago I had a serum reading of over 1900 on the B12(275-1000 normal reference range), but a specialized test I ordered revealed an actual deficiency (-.2%). You can pack your system with vitamin supplements all you want, but that does not always guarentee your system has that much. The WBC's don't always except everything they're given.

In my case, I took b12 sublinguals, which increased my serum count to over 2500, but my specialized WBC test than revealed I was just right. I have never had a mouth sore since that time.

brehm48 Newbie

I get canker sores when I drink to much coffee or eat to much sugar. Or if I'm really stressed out which makes me drink more coffee, cause I'm ussually tired.

  • 6 months later...
Arti360 Newbie

Hope you all feel better!

What works wonders for me is ORA5

You can order it at ORA5.com

Heres to good health.

Miki

  • 8 months later...
paulasimone Rookie

re: canker sores - it's your toothpaste!!!!

I was able to stop most of my canker sore outbreaks even *before* I got diagnosed and went gluten-free, because I read about a medical study saying some 80% (?) of canker sore sufferers got better when they used toothpaste *without* sodium lauryl sulfate (or sodium laureth sulfate).

I been plagued with them since I was a child - got them all down my throat in college, which was a nightmare. But the toothpaste thing is for real - I was so relieved when it worked but so mad to have spent 20 years suffering (but we're all used to that by now I guess.) ;)

here's the difficult thing: ALMOST ALL of the major brands INCLUDING TOM'S!!! have this harsh detergent ingredient (sodium lauryl or laureth sulfate). Here's some I found that didn't. You can get them at Whole Foods or whatever your pricy natural food store is, or your co-op:

J/A/S/O/N brand

*my favorite* - I get "Powersmile" - it's mint-flavored and whitening. they also have an orange flavored one that's yummy and kids would probably like. they also have gels.

Weleda (Swiss brand)

this comes in some weird flavors like licorice or salt.

some Ayurvedic toothpastes

again, these have weird flavors usually. spices or licorice and stuff. too weird for me.

at one point Rembrandt was making one that even said "for canker sore sufferers" on it. maybe it was "rembrandt natural"? i haven't seen it lately, though, and you would need to check the rest of their products to see if they have sodium lauryl (or laureth) sulfate. Again, sadly, Tom's of Maine toothpaste, just like Crest and everyone else, is not good for canker sore sufferers. Sadly. I like their soap.

:)

paula

Cape Newbie

Hi, all you mouth sore suffers. I am one too. These are just theories, but they might help some. Coke has carmel in it which might have gluten. Not sure, but I haven't had a Coke since I found out I was pregnant with my daughter. I noticed a big difference in the reduction of my canker sores, 10 years even before I knew I was a Celiac. I was totally adicted to Cokes. If I can give it up, anyone can, but I was nursing my baby; more incentive, I suppose.

I stopped gluten and so many of my "issues" have gotten better, but I figured out that I have other food issues too. I have stopped eating all foods in the Night Shade family - tomatoes, potatoes, eggplant, peppers and some others I can't remember now. I have stopped all dairy, soy, and beans too. They cause me to have referred pain in my shoulders, hips and knees, my bursa(s). I will indeed get a canker sore if I inadvertantly eat any of these foods. (Good thing I have a sense of humor. Between my friends and wait persons at restaurants I get some fun poked at me about what can I eat.)

Bye, Cape


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



Celiac.com Sponsor (A8-M):



covsooze Enthusiast
re: canker sores - it's your toothpaste!!!!

I was able to stop most of my canker sore outbreaks even *before* I got diagnosed and went gluten-free, because I read about a medical study saying some 80% (?) of canker sore sufferers got better when they used toothpaste *without* sodium lauryl sulfate (or sodium laureth sulfate).

For those of you in the UK with this problem, I've just bought Holland & Barret's own make Aloe Vera toothpaste which is SLS free and made of all natural ingredients. it's obviously too early to know whether it'll work, but it feels so much better to use - I can definitely say that it feels gentler :)

Here's an interesting link about this issue:

Open Original Shared Link

Susie

  • 3 weeks later...
Guest jhmom
re: canker sores - it's your toothpaste!!!!
I have to disagree with this statement.

I have Lupus and that happens to be a symptom of it (yay for me, lol). My sores last up to 2 weeks and usually happen when I am in a flare. People may get sores from gluten, sugar, toothpaste, coke, etc but I KNOW I have been 100% gluten free since Sept 03 and never had sores like I have for the past couple of years. Now I take 4-5mg of Folic Acid everyday and that seems to help more than anything. So some of you may need the extra Folic Acid, talk to your doctor or dentist about it.

nederlandse Newbie

I've been gluten-free for a good 7 months now and have only recently been experiencing mouth sores. The weird part is that they aren't like the regular sores I recall getting on occasion throughout my life. These are only on the roof of my mouth and they seem to swell and shrink over the course of days. This has been going on for about a month now. I've never seen or heard of anything like it before. Anyone else experience anything like this? I'm at a loss... so is my dentist.

Archived

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

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,828
    • Most Online (within 30 mins)
      7,748

    ABC reno
    Newest Member
    ABC reno
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Scott Adams
      If your tTg-IgA was 28 and positive is at 3, you are nearly 10x over the positive marker, so the most likely explanation by far would be celiac disease. I also do not understand why your doctor would not want to run the blood test, which is the normal first step in the diagnosis process.
    • xxnonamexx
      Is there a digestive enzyme that helps build a healthier gut? I see people taking them but not sure what really works
    • trents
      So the tTG-IGA at 28 is positive for celiac disease. There are some other medical conditions that can cause elevated tTG-IGA but this is unlikely. There are some people for whom the dairy protein casein can cause this but by far the most likely cause is celiac disease. Especially when your small bowel lining is "scalloped". Your Serum IGA 01 (aka, "total IGA") at 245 mg/dl is within normal range, indicating you are not IGA deficient. But I also think it would be wise to take your doctor's advice about the sucraid diet and avoiding dairy . . . at least until you experience healing and your gut has had a chance to heal, which can take around two years. After that, you can experiment with adding dairy back in and monitor symptoms. By the way, if you want the protein afforded by dairy but need to avoid casein, you can do so with whey protein powder. Whey is the other major protein in dairy.
    • jenniber
      hi, i want to say thank you to you and @trents   . after 2 phone calls to my GI, her office called me back to tell me that a blood test was “unnecessary” and that we should “follow the gold standard” and since my biopsy did not indicate celiac, to follow the no dairy and sucraid diet. i luckily have expendable income and made an appt for the labcorp blood test that day. i just got my results back and it indicates celiac disease i think 😭   im honestly happy bc now i KNOW and i can go gluten free. and i am SO MAD at this doctor for dismissing me for a simple blood test that wouldn’t have cost her anything !!!!!!!!!!! im sorry, im so emotional right now, i have been sick my whole life and never knew why, i feel so much better already   my results from labcorp:   Celiac Ab tTG TIgA w/Rflx Test Current Result and Flag Previous Result and Date Units Reference Interval t-Transglutaminase (tTG) IgA 01 28 High U/mL 0-3 Negative 0 - 3 Weak Positive 4 - 10 Positive >10 Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy. Immunoglobulin A, Qn, Serum 01 245 mg/dL 87-352
    • JoJo0611
      Thank you this really helped. 
×
×
  • 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.