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Anyone W/ Canker Sores?

rez

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rez Apprentice
rez
Posted

I'm really struggling and doubting myself again. My 8 year old son had a terrible history of multiple, painful, recurrent canker sores. This along w/ acid reflux, stomach pain, and vomitting were his main symptoms. We started the diet Sept. 4 and he got his first canker on the 27th. Then, not another until Nov 3. Now, he's got another one!!! UGG!!! I'm going crazy trying to figure this out. I read somewhere that dairy and processed foods like hot dogs can also be a culprit. Anyone with any insight or experience? I asked him if we should try gluten again, because maybe that's not really the problem. He replied, NO WAY!!!! "I'm never going back to that stuff!" I just don't want to be missing something. We got frustrated ourselves after numerous doctors, wrong test, etc. He never did have an actual test run. They ran the wrong test, and by then it was too late since we had already started the diet. This is so hard, not knowing for sure. I would love any helpful advice on the canker sore topic. He seems to do the best when we're really strict with his diet, but unfortunately w/ all the holidays coming up that is going to get harder. Any help would be appreciated. thanks. :)

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Guest nini
Guest nini
Posted

the canker sores my daughter and I get seem to be related to viruses... not food...

Michi8 Contributor
Michi8
Posted

Recurrent canker sores can be caused by vitamin deficiencies (iron, folic acid, vitamin B12.) Has your son had his levels tested? Is he taking any supplements?

Michelle

rez Apprentice
rez
Posted
  • Author
Recurrent canker sores can be caused by vitamin deficiencies (iron, folic acid, vitamin B12.) Has your son had his levels tested? Is he taking any supplements?

Michelle

He has not taken any supplements and has not had his levels tested. My doctor's here are not very informed/knowledgeable about gluten intolerance. Could celiac cause the malabsorbtion of these levels or is it an entirely different problem. I'm so confused. What specific tests could I ask for and what type of doctor would do them? Thanks

Michi8 Contributor
Michi8
Posted
He has not taken any supplements and has not had his levels tested. My doctor's here are not very informed/knowledgeable about gluten intolerance. Could celiac cause the malabsorbtion of these levels or is it an entirely different problem. I'm so confused. What specific tests could I ask for and what type of doctor would do them? Thanks

Yes, celiac can cause malabsorption of vitamins and minerals, and recurring canker sores are one of the many symptoms associated with celiac (but can be associated with other health issues too.) Testing for iron and B12 should be pretty standard even for a regular yearly blood workup. Personally, I'd get blood testing done for the celiac panel, thyroid function, vitamin levels, CBC & differential, etc.

Michelle

zansu Rookie
zansu
Posted

I also get canker sores from acidic foods -- I LOVE fresh pineapple and strawberries, but if I eat them, I get canker sores. I gotten them less since going gluten-free, but I still sometimes get them.

rez Apprentice
rez
Posted
  • Author
I also get canker sores from acidic foods -- I LOVE fresh pineapple and strawberries, but if I eat them, I get canker sores. I gotten them less since going gluten-free, but I still sometimes get them.

Thanks. It's so easy to get down. Strawberries could definitely be a possibility. I just bought them this past week and now a new canker. :( Hot dogs may also be the culprit. Thanks for the replies. I just tried baking a gluten free chocolate cake for Thanksgiving and it totally flopped. Half of it was stuck in the pan when I tried to flip it. Trifle anyone????????

Thanks for the advice. I don't think the Celiac panel would show anything since he's been gluten free for three months. It's so hard. I hate the not knowing. Just the second I think I have it all figured out, another glitch happens. Thanks again. :)

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e&j0304 Enthusiast
e&j0304
Posted

Aren't mouth sores a symptom of celiac? I have read that numerous times. I am sorry you're stuggling so much. I wish there was a magic wand someone could wave to make you feel like you're doing the right thing 100% of the time. I know how you feel and it is hard and frustrating. If Thomas is feeling better off gluten I think you have your answer. If HE chooses to give gluten a try again someday, then it will be up to him and he can see how he feels.

Good luck. I know how hard this has been on you. You are a wonderful mother and I know you're only trying to do the best for him. I hope that you realize that you ARE doing what you know to be best for him.

Take care,

Shannon

rez Apprentice
rez
Posted
  • Author

Thanks Shannon. It's just all such a mystery as you know. Too bad it couldn't all be black and white. Haley's home sick w/ the stomach flu today. :( Calgon!!!!!!!!!!!!!!!! AND my poor cake, or crumbs, I should say. I must make lemonade out of lemons. I will not fail!!!!! I'm going to find a delicious chocolate trifle and layer away!!!!!!!!! Kandi

Carriefaith Enthusiast
Carriefaith
Posted

My allergist said that cancer sores can come from an allergy to molds.

rez Apprentice
rez
Posted
  • Author

Thanks for the reply. What would I do if they were being caused by mold? How would I treat it? Thanks! :)

Ursa Major Collaborator
Ursa Major
Posted

Kandi, you really, really need to get your son's levels of calcium, magnesium, vitamin D, ferretin, B12, vitamin K tested. As well as a bone density scan. Because, even though it's hard to believe, celiac disease can cause osteoporosis in children already, due to malabsorption of calcium.

And even before you do the testing (or are waiting for results), you ought to put him on a good, gluten-free, multivitamin. Others here will know brands for kids that are gluten-free.

I am impressed by your son saying that, no way will he ever eat gluten again. For a kid to be so adamant shows how terrible he felt with gluten, and what an improvement the gluten-free diet must be.

rez Apprentice
rez
Posted
  • Author

Thanks so much for your wonderful replies and support. I am going to make an appointment w/ my doctor tomorrow. I had a great talk w/ my mom too. She's so supportive and reassuring. I'm so glad to have her support as well as all of yours. She also said that Thomas must have felt really, really awful. What 8 year old wouldn't want to dive into a pizza or donut. He refuses!!!!! He is a bright boy. I have him taking a multi-vitamin, but I feel I will never find out what is causing these sores. There are so many things it could be, but this tells me he is still having some sort of auto-immune reaction. The severity, number, and frequency have definitely decreased since going gluten free, but I wish they would ALL go away. I'm affraid my doctor will think I'm more crazy than he already does. He told me I should have been a doctor. He said we could have been partners. I think he's being sarcastic. :( How would they check all these levels and could it be done from one blood draw? Thanks again! Kandi

LoriBelle Newbie
LoriBelle
Posted

Hi Kandi,

I have suffered with canker sores my entire life - some lasting up to two weeks and me not able to talk, smile, eat or drink anything so I know the agony that your son must be feeling. I have learned a few things about canker sores and I'd love to share what I have found out from trial and error.

- make sure your son is not using a toothpaste that contains sodium laurel sulfate (I'll have to look that up to make sure I have the words and spelling correct) There are only a few toothpastes on the market that do not contain this ingredient. I have to use Biotene and I can find it at my regular grocery store - Publix - but I imagine most stores will carry it. There are a couple of other toothpastes available that are sodium laurel sulfate free. I would need to do a google search.

- as soon as your son starts to feel the very beginning of a canker sore, you can start giving him Lysine - which is a supplement. It should stop the canker sore from fully developing or, if it has already started, it will go away very quickly

- canker sores can be caused from mouth trauma as well as foods. Something as simple as accidentally poking the inside of his mouth with his toothbrush can get one started, especially if he is now prone to them. Also, biting the inside of his mouth while chewing. Strong acidic foods and/or too much Vitamin C are also culprits.

I hope this helps him out in some way. Oh - and once he has the beginning of a canker sore, no acidic foods at all until it is healed.

Lori

jerseyangel Proficient
jerseyangel
Posted

Regarding sodium laurel sulfate, I use Jason Supersmile Toothpaste. It's SLS free. I also never get canker sores anymore. :)

Michi8 Contributor
Michi8
Posted
How would they check all these levels and could it be done from one blood draw? Thanks again! Kandi

Yes, all the tests can be done with one blood draw (fills a few test tubes,) provided the doctor asks for them all on the requisition. If your son is concerned about pain, you can use an EMLA patch on the blood test site. You can get it from a pharmacy...you simply apply the patch 1 hour prior to testing...totally numbs the area.

Michelle

Nancym Enthusiast
Nancym
Posted

I always got canker sores in the winter, around holiday time. My Mom always blamed sugar. Now I'm thinking it was probably the wheat. I haven't had any since going gluten free.

Another thing to suspect... because of the timing (winter, shorter days, inside, etc) maybe a vitamin D deficiency?

LoriBelle Newbie
LoriBelle
Posted
Regarding sodium laurel sulfate, I use Jason Supersmile Toothpaste. It's SLS free. I also never get canker sores anymore. :)

Thanks Patti! :) Where do you buy Jason Supersmile Toothpaste? I've never heard of it.

Lori

jerseyangel Proficient
jerseyangel
Posted
Thanks Patti! :) Where do you buy Jason Supersmile Toothpaste? I've never heard of it.

Lori

I get mine at Wegman's--a large grocery store here. I've also seen it at my local health food store, and at Whole Foods. :) I really like it--it has a nice fresh, but not artifical, taste and I swear my teeth look brighter!

LoriBelle Newbie
LoriBelle
Posted
I get mine at Wegman's--a large grocery store here. I've also seen it at my local health food store, and at Whole Foods. :) I really like it--it has a nice fresh, but not artifical, taste and I swear my teeth look brighter!

I looked on drugstore.com and find a Jason Powersmile - looks like cinnamon flavor. Is that the correct one? It says it won the "flavor award" a few years in a row. If this is the one, I'm going to get some. I'm tired of Biotene's flavor and would love a change.

Kandi - this may be a great tasting toothpaste for your son too! :)

Lori

jerseyangel Proficient
jerseyangel
Posted
I looked on drugstore.com and find a Jason Powersmile - looks like cinnamon flavor. Is that the correct one? It says it won the "flavor award" a few years in a row. If this is the one, I'm going to get some. I'm tired of Biotene's flavor and would love a change.

Kandi - this may be a great tasting toothpaste for your son too! :)

Lori

Oh shoot! I said "Supersmile"--I meant "Powersmile" :ph34r: Mine is the peppermint flavor, but I know they have several varities. I think you'll like it--the cinnamon sounds good, too :)

rez Apprentice
rez
Posted
  • Author

Thanks again for all the great support and help!!! :):):)

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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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