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

By Guest jhmom
in Related Issues & Disorders

Recommended Posts

lovegrov Collaborator
lovegrov
Posted

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
kabowman
Posted

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
red345
Posted

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
brehm48
Posted

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
Arti360
Posted

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
paulasimone
Posted

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
Cape
Posted

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
covsooze
Posted
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
Guest jhmom
Posted
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
nederlandse
Posted

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.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Blood tests for thiamine are unreliable. The nutrients from your food get absorbed into the bloodstream and travel around the body. So, a steak dinner can falsely raise thiamine blood levels in the following days. Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte...
    2. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine?
    3. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine. Legumes (beans) do contain thiamine. Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and Cobalamine B12 are mostly found in meats. Meat, especially organ...
    4. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc. Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food....
    5. Scott Adams
      - Scott Adams replied to Russ H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Anti-endomysial Antibody (EMA) Testing

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,870
    • Most Online (within 30 mins)
      7,748
    KABoston
    Newest Member
    KABoston
    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

    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
    • Scott Adams
      Anti-endomysial Antibody (EMA) Testing

      By Scott Adams · Posted

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
×
×
  • 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.