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

Anyone W/ Canker Sores?


rez

Recommended Posts

rez Apprentice

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. :)


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Guest nini

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

Michi8 Contributor

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
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
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

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
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. :)


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



e&j0304 Enthusiast

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

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

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

rez Apprentice

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

Ursa Major Collaborator

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

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

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

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

Michi8 Contributor
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

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
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
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
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
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

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

Archived

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

  • 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 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,329
    • Most Online (within 30 mins)
      7,748

    klkarius
    Newest Member
    klkarius
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • 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.