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Canker Sores & Gluten


anonymousplease

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anonymousplease Apprentice

Hi All,

Here's a question for you:

If celiac disease causes a reaction in the small intestine, why does my tongue break out in canker sores immediately after gluten touches it? 

Maybe this is silly and I'm missing an obvious reason but hear me out.

I kind of understand why I get canker sores (the bigger ones that last for weeks) a day or two after eating gluten. At that point, the gluten has made it down to my gut, a reaction / rejection has occurred, the damage is done and my system is in it's recovery mode - doing whatever it does, pulling water into my gut to flush it out, producing extra acid in my stomach (not sure why it does that but it does), etc. I always assumed the really bad canker sores had something to do with stomach acid, but not sure. 

I can't understand why canker sores, the smaller ones on the tongue that go away in a day or two, happen almost immediately if the main reactor to gluten is the small intestine. The food doesn't make it down there for hours (I have quite a slow digestive tract). Could there be a reaction to gluten that actually starts as soon as it's inside my mouth? We know a lot about celiac disease and gluten intolerances but we don't know everything. (Another example: we don't know why certified gluten free oats still make some people sick...they're certified! There is no gluten in them. They're similar, is the only answer. Hmm.). We also don't know much about canker sores and why some people get them and others don't or what actually causes them.

I think there is a lot of research still needed and a lot more to figure out. I hate to even say it but could it be something other than the gluten protein? Did we jump the gun on that explanation? Could the gluten reaction start earlier in the digestive process, like during step one - chewing. Could our saliva contain useful information in explaining a cause for gluten intolerance? 

Just some things I think about all day every day.


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cyclinglady Grand Master
(edited)

Celiac disease, as you know is autoimmune that mainly causes damage to the small intestine, but is also systemic.  It can affect any organ in the body. 

Celiac disease is also under the umbrella of hypersensitivity (immune system).  It is one of four types and you can have more than one type.  This Wiki explanation is simple and to the point.  You can research the topic more from university and medical sites.  

https://en.m.wikipedia.org/wiki/Hypersensitivity

Why the fast reaction in regards to canker sores?  Researchers have linked cytokines (part of the immune system) as a culprit (some people vomit, etc.) 

https://advances.sciencemag.org/content/5/8/eaaw7756

Remember that autoimmune diseases (over 80 identified and named) are linked.  I think medical should just say, “You have autoimmune disease.  It is currently attacking your small intestine.  We used to call it celiac disease.  The current treatment is a gluten free diet.    We will keep an eye out for other organs that could be attacked (like Crohn’s, lupus, MS, etc.) and we might need to treat those with medication.”

 

Edited by cyclinglady
Awol cast iron stomach Experienced

As cycling lady says those cytokines gear up pretty quickly for some of us. My cytokines flood more than my intestines. My mouth, esophagus, stomach, and muscles to start.

kanucme2019 Apprentice
On 4/9/2020 at 1:09 PM, Ali Rae said:

Hi All,

Here's a question for you:

If celiac disease causes a reaction in the small intestine, why does my tongue break out in canker sores immediately after gluten touches it? 

Maybe this is silly and I'm missing an obvious reason but hear me out.

I kind of understand why I get canker sores (the bigger ones that last for weeks) a day or two after eating gluten. At that point, the gluten has made it down to my gut, a reaction / rejection has occurred, the damage is done and my system is in it's recovery mode - doing whatever it does, pulling water into my gut to flush it out, producing extra acid in my stomach (not sure why it does that but it does), etc. I always assumed the really bad canker sores had something to do with stomach acid, but not sure. 

I can't understand why canker sores, the smaller ones on the tongue that go away in a day or two, happen almost immediately if the main reactor to gluten is the small intestine. The food doesn't make it down there for hours (I have quite a slow digestive tract). Could there be a reaction to gluten that actually starts as soon as it's inside my mouth? We know a lot about celiac disease and gluten intolerances but we don't know everything. (Another example: we don't know why certified gluten free oats still make some people sick...they're certified! There is no gluten in them. They're similar, is the only answer. Hmm.). We also don't know much about canker sores and why some people get them and others don't or what actually causes them.

I think there is a lot of research still needed and a lot more to figure out. I hate to even say it but could it be something other than the gluten protein? Did we jump the gun on that explanation? Could the gluten reaction start earlier in the digestive process, like during step one - chewing. Could our saliva contain useful information in explaining a cause for gluten intolerance? 

Just some things I think about all day every day.

It may not be gluten. It may be food allergy.  Have you tried eliminating other foods from your diet?  I have suffered from canker sores in my mouth for years.  I would get 5 or 6 of them at one time and they were very painful.  The dentist thought it might be the toothpaste or the mouthwash I was using.  The doctor thought it was either acid reflex, acidity food or the beer that I drank. Last year I finally figured out what it was and it was chocolate.  I did a lot of research on what causes canker sores, starting eliminating certain foods from my diet and it was definitely chocolate.  I gave up eating chocolate for a year and I have not had any problems with canker sores.  Recently I tried eating a very small piece of chocolate and the next day the sores were back.  I really miss chocolate but it wasn't worth a week of pain in my mouth with all those sores.  

anonymousplease Apprentice
7 hours ago, kanucme2019 said:

It may not be gluten. It may be food allergy.  Have you tried eliminating other foods from your diet?  I have suffered from canker sores in my mouth for years.  I would get 5 or 6 of them at one time and they were very painful.  The dentist thought it might be the toothpaste or the mouthwash I was using.  The doctor thought it was either acid reflex, acidity food or the beer that I drank. Last year I finally figured out what it was and it was chocolate.  I did a lot of research on what causes canker sores, starting eliminating certain foods from my diet and it was definitely chocolate.  I gave up eating chocolate for a year and I have not had any problems with canker sores.  Recently I tried eating a very small piece of chocolate and the next day the sores were back.  I really miss chocolate but it wasn't worth a week of pain in my mouth with all those sores.  

Hey kanucme2019,

Thank you for commenting, I appreciate your input. For me, I'm not searching for the food or ingredient cause, I know my canker sores are directly related to gluten. I'm not currently having an issue with outbreaks or anything like that, just pondering how the gluten can take effect so quickly. I just feel like there is still so much we don't know and explain away based on what we do know, which leads to conclusions that might not be true. I just want the research to continue and go down new avenues. 

  • 2 weeks later...
knitty kitty Grand Master

Ali Rae,

Celiac Disease causes malabsorption which results in malnutrition (aka vitamin deficiencies).

Recurrent Aphthous Ulceration: Vitamin B1, B2 and B6 Status and Response to Replacement Therapy

https://pubmed.ncbi.nlm.nih.gov/1941656/

 

Thiamine helps reduce cytokines.  

Long-Term Treatment by Vitamin B1 and Reduction of Serum Proinflammatory Cytokines, Hyperalgesia, and Paw Edema in Adjuvant-Induced Arthritis

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5102562/

 

Thiamine Deficiency Promotes T Cell Infiltration in Experimental Autoimmune Encephalomyelitis: the Involvement of CCL2

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4135011/

Hope this helps!

Posterboy Mentor

Ali Rae,

I don't have time to explain it in more detail today but here is a couple links that will help you....take some Lysine...

https://www.researchgate.net/publication/267202860_Clinical_success_of_lysine_in_association_with_serumal_and_salivary_presence_of_HSV-1_in_patients_with_recurrent_aphthous_ulceration

https://www.ncbi.nlm.nih.gov/pubmed/6438572

I used to have your problems....If I ever get mouth sores today (rarely now)....but when it was a reoccurring thing taking the Amino Acid Lysine always got rid of them...

When our stomach acid get's low we can't digestion proteins down into the component amino acids and we have a problem absorbing all the amino acids we need to function properly...

I hope this is helpful but it is not medical advise.

Posterboy,


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    • trents
      So, you had both and endoscopy with biopsy and a colonoscopy. That helps me understand what you were trying to communicate. No, no! It never occurred to me that you were trying to mislead me. It's just that we get a lot of posters on the forum who are misinformed about what celiac disease is and how it is diagnosed so I need some clarification from you which you were so gracious to give.
    • barb simkin
      I had both the genetic genes for celiac.  My gastroenologist advised he also took a biopsy during one of my colonoscopies and endoscopy and advised I had celiac disease, along with stomach ulcers from my esophagus stomach down to my small bowel. I was shown the ulcers on the catscan and endoscopy report.  I also had polyps in 3 places throughout my large bowel. I was on a strict diet for months following.  I am sorry if I didnt define how I was diagnosed with celiac disease.  I am sorry if you think I was misleading you. I also had to pay $150.00 for the genetic testing.
    • trents
      So, I'm a little confused here. I understand you to say that you have not been officially diagnosed with celiac disease. Is this correct?  You have had genetic testing done to check for the potential for developing celiac disease and that was positive. Is this correct? I think you meant to type "gluten sensitivity" but you typed "gluten insensitivity". Just so we are clear about the terminology, there is celiac disease and there is NCGS (Non Celiac Gluten Sensitivity). They are not the same but they have overlapping symptoms. Celiac disease causes damage to the small bowel lining but NCGS does not. NCGS is often referred to in short form as gluten sensitivity. However, people often use the terms celiac disease and gluten sensitivity interchangeably so it can be unclear which disease they are referring to. Genetic testing cannot be used to diagnose celiac disease but it can be used to establish the potential to develop active celiac disease. About 40% of the general population has one or both of  the genes that have been most strongly connected with the potential to develop active celiac disease but only about 1% of the population actually develops active celiac disease. This makes the genetic test useful for ruling out celiac disease but not for diagnosing it. A colonoscopy cannot be used to diagnose celiac disease because it doesn't permit the scope to go up into the small bowel where celiac disease does the damage. They use an endoscopy ("upper GI) for checking the small bowel lining for celiac damage.
    • barb simkin
      I did nor read the chocolate pkg as it was of fered to me and I ate 2 pcs. I do know that only very dark chocolate and and a very few others are gluten free. Most alcohols contain gluten. I have several yrs of not knowing my celiac condition as docs would not do the test. After looking on the internet about my sufferings I insisted on the gene trsting which showed positive for gluten insensitivity and a biopsy on my next colonoscopy that also showed positive which could not help the damage done to my small bowel. So I very rarely have a glass of wine
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