Jump to content
  • 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):

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. - Scott Adams replied to Jmartes71's topic in Dermatitis Herpetiformis
      6

      Skin issues

    2. - Scott Adams replied to N Young's topic in Doctors
      1

      Frustrated with Providers

    3. - Jmartes71 replied to Jmartes71's topic in Dermatitis Herpetiformis
      6

      Skin issues

    4. - N Young posted a topic in Doctors
      1

      Frustrated with Providers

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

    • Total Members
      134,116
    • Most Online (within 30 mins)
      10,442

    DiDi53
    Newest Member
    DiDi53
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Scott Adams
      I’m sorry you’re going through all of this. It sounds very stressful, especially when you feel that your symptoms are not being taken seriously. Until you are seen next week, it may help to keep the focus very practical: take clear photos of the skin sores, write down a timeline of symptoms, list all medicines, eye drops, supplements, implants/leak history, and any test results, and bring that to the dermatologist. If there is drainage, spreading redness, fever, worsening pain, eye involvement, or signs of infection, that needs prompt medical care. I would be cautious about assuming parasites or staph without testing, and also cautious with new supplements or putting vitamin C directly on sores, since irritated skin can get worse. A dermatologist can culture lesions, biopsy if needed, and refer to infectious disease if the findings point that way. On the celiac side, I understand your concern for your son, but being HLA-DQ2 positive does not by itself mean he has celiac disease; it means he has a genetic risk. If he is eating gluten now, this is actually the best time for proper celiac blood testing before he tries a gluten-free diet. His symptoms, weight, congestion, and family history are worth discussing with a gastroenterologist, but he should not be told he has celiac based only on HLA status. For your own care, try to keep pushing for objective testing and clear documentation in your records, because that is often what gets doctors to take the next step.
    • Scott Adams
      You are not being unreasonable. A negative celiac blood test after 25 years gluten-free does not rule out celiac disease, because the antibodies usually fall once gluten is removed. It may simply show that your gluten-free diet is working. I would ask the doctor to add a clear note to your chart stating that the test was done while you were strictly gluten-free, that you have a long history of dermatitis herpetiformis and strong clinical response to the gluten-free diet, and that celiac disease remains your working diagnosis unless properly reassessed with a supervised gluten challenge, which you may not want or need at this stage. This should help prevent future confusion. It is understandable to feel frustrated, especially after decades of being dismissed, but this may be fixable with a calm conversation and a chart correction rather than changing doctors.
    • Scott Adams
      These articles may be helpful:    
    • Jmartes71
      I went to ER on the 30th because I didn't want to wait and saw dr at desk for intake. I went for NOTHING!. ER Dr was very nice but made it seem as if I was a nut case rater than coming in for real issues calmly explaining its staph! Staph,  by look no blood test, no skin test. No looking in my nose and throat was given a prescription for jock cream and some pills ! I made the mistake of saying Im waiting on Infectious disease. She asked how did I get referral and I said I did it online.The next day I checked the status and it was denied! I did get  a referral to the dermatology office i went to last year that over charged me and did a biopsy on me stating inconclusive! I went to another dermatologist and he stated I should see Infectious disease at place i put in referral. With that I contacted that dermatologist and waiting to see if he thinks dermatology or Infectious disease is the route.I do have appointment for dermatology next week.Until then i did purchase Zahler paraGuard advance intestinal  flora support  from Sprouts. Im also very alarmed that the fact celiac isn't addressed properly infact its downplayed. When I had my son tested for HLA-DQ2 and it came out positive because he is eating everything and he is extremely skinny but he isn't dealing with severe diagestive issues because thats all he knows NOW or yet because he is still young 21.I too didn't know any difference when i was that age because thats all we know.Life changes will get him in latter years im afraid because what im dealing with.That scares me.The specialist we went to was only about congestion he is getting.He is getting congestion because he is eating what he isn't supposed too! Zero talk about celiac and HLA-DQ2 positive. Only talk was he is congested because we live in the Valley! They wanted to do surgery! I did write again to our district leader considering when I did call, the guy stated he knew all about celiac. I really wanted to tell him NO YOU DON'T but held my tongue. For my skin sores the cream given didn't do anything because ive also had in past.Ive been putting liquid vitamin c on it and taking vitamins which is making a little difference just with the last few days of doing.
    • N Young
      I have been Gluten Free for 25 years and havent eaten gluten knowingly during that time.   Such a rocky life, I have had issues since I was 16 when physicians stated I needed to see a psychiatrist. I am now 70 years old. I also had Dermatitis herpetiformis. I had negative tests on biopsy, blood test etc but no doctor mentioned that I needed to do a gluten challenge. I went on an elimination diet and found relief on the Dermatitis within a month. I have no doubt that I am celiac and very sensitive now. Now my issue is that I changed physicians due to retirement and he performed a blood test and included a celiac test. I was very upset because I did not request the test and had not been eating gluten for 25 years. Of course the test was negative.  My question - Will this cause me any issues with health treatment if my records now have that I dont have celiac? I like this physician and I am appalled that he performed the test. (he told me his brother is also celiac).  I feel that we are still living in the dark ages. I dont want to cause problems because I rarely need health treatment since I live a fairly healthy lifestyle.  Since I am at this age and been through so much getting to this point am I being unreasonable for being upset? I am not expecting to see this physician for another 2 months.  Need to know if I can expect issues with future treatments. How can a physician not know about the gluten challenge this day and age?   
×
×
  • Create New...