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

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

Link to comment
Share on other sites

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

Link to comment
Share on other sites
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.

Link to comment
Share on other sites
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.

Link to comment
Share on other sites
  • 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

Link to comment
Share on other sites
  • 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

Link to comment
Share on other sites
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

Link to comment
Share on other sites

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

Link to comment
Share on other sites
  • 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.

Link to comment
Share on other sites
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.

Link to comment
Share on other sites

Archived

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



  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      125,075
    • Most Online (within 30 mins)
      7,748

    Connie Conner
    Newest Member
    Connie Conner
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.8k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)


  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      Hello, @glucel, Unintended weight loss is symptomatic of Thiamine deficiency.  Our bodies use more Thiamine when we are ill and stressed.  Switching to a gluten free diet can also result in a lower intake of Thiamine.   Interesting Reading: Coronary Artery Bypass Graft (CABG) surgery depletes plasma thiamine levels https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2874825/ Gluten-free diet intervention reduces thiamine intake in two weeks... https://pubmed.ncbi.nlm.nih.gov/34583628/ This study found normal people, without Celiac Disease and malabsorption concerns, had a drop in Thiamine after starting a gluten free diet.  They went back to eating a gluten containing diet.  We don't get that option.  Gluten free processed foods are not enriched with vitamins like gluten containing counterparts.  Supplementing helps boost your absorption of essential vitamins and minerals.
    • knitty kitty
      Hello, @Neat1, Yes, neck and shoulder pain can be symptoms of Gerd, which is fairly common in Celiac Disease. Ask for a DNA test, too.  Celiac Disease is genetic.  If you've got celiac disease genes, further testing is warranted.  Some people have Celiac genes, but don't have active Celiac Disease.  If you've got symptoms, your genes are probably activated.   Diabetes, anemia and Thiamine deficiency can cause false negatives on antibody tests.  Some people with Celiac Disease are seronegative.   Thiamine deficiency can cause constipation and gastrointestinal symptoms.  Magnesium supplementation can help with that, too.  Nutritional deficiencies like these are common in untreated Celiac Disease. Keep us posted on your progress!
    • knitty kitty
      Not really.  Blood tests for vitamin deficiencies are not accurate.  You can have "normal" blood levels and have vitamin deficiency symptoms before blood levels change.  The brain sends messages to the body to release into the bloodstream any extra vitamins stored within cells of tissues and organs so that important organs like the brain and heart can keep getting a supply.  Even what you've eaten in the previous twenty-four to forty-eight hours can affect blood tests.  Taking vitamin supplements eight to twelve weeks before testing, will give falsely elevated results.   Because tests for Thiamine can be so inaccurate, as well as time consuming and expensive, the World Health Organization recommends taking Thiamine and looking for health improvements.  Thiamine is nontoxic, even in high doses.  Thiamine is water soluble and any excess is easily excreted in urine.  WHO recommends giving 500 mg/day of Thiamine Hydrochloride for several days and looking for health improvements.  Some people with Thiamine deficiency need higher doses (1000 - 2000 mg/day).   Benfotiamine, a lipid soluble form of Thiamine, can get inside cells without using the thiamine transporters on the cell surface,  which shut down during thiamine deficiency.  Thiamine Hydrochloride has to get in by transporters, or by passive diffusion, which requires higher doses.  Benfotiamine has been shown to promote intestinal healing.  300 - 1200 mg/day of  Benfotiamine are required. Allithiamine (Tetrahydrofurfuryl Disulfide TTFD) can cross the blood brain barrier without a carrier cell, so Allithiamine is really helpful with neurological symptoms, brain fog, balance issues, problems swallowing, gastroparesis.  50 - 1000 mg/day of Allithiamine.  Find the best dose for you.   I understand the skepticism about Thiamine.  If I hadn't lived through it myself....read my blog...I was skeptical myself, but I could feel myself dying and was grasping at straws.  Within a few minutes of taking my first dose of Thiamine, I felt better and was astounded at how simple the solution was.   Is nutrition even taught in schools today?  I learned basic nutrition in Home Economics, but that's been cut.  Dieting programs distract from nutrition and mostly count calories.   P.S. Riboflavin Vitamin B2 deficiency has been linked to migraines.
    • trents
      As far as your neck and shoulder pain goes, yes, this could be a symptom of celiac disease as one of the more than 200 symptoms associated with celiac disease is joint pain.
    • trents
      10g of gluten or the amount in about 4-6 slices of bread daily for several weeks should be a sufficient "gluten challenge". Your primary care provider should be able to order those tests.
×
×
  • Create New...