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Guest jhmom

Mouth Sores

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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

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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


-Kate

gluten-free since July 2004

Other Intolerances:

Strawberries and Banannas (2007)

Nitrates (April 2006)

Yeast (which includes all vinegar so no condiments) (Oct. 2004)

Peanuts (Nov. 2004)

Soy (Oct. 2004)

Almonds (Sept. 2004)

Corn (Sept. 2004)

Lactose/Casein (1999)

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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.

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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.


Rebecca

Sometimes I feel like conquering the world

Other times I want to stay in bed.

gluten-free Since Dec 2002

positive dietary challenge

still testing

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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

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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

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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:

http://www.mouthulcers.org/

Susie


Susie from Coventry, UK

IBS & GERD 2000

Screened for coeliac disease as sister has it - negative blood test

Nov 2005 positive blood tests

January 2006 dx by biopsy

gluten-free and dairy lite since then

I am also neutropenic, anaemic and have hypothyroidism

Feb 08: free protein S deficiency; candida overgrowth; adrenal exhaustion

'My grace is enough; it's all you need. My strength comes into its own in your weakness.' 2 Corinthians 12

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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.

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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.

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