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

Sores In Mouth - Symptom Of Gluten-intolorance As Well As Celiac?

Lynayah

Recommended Posts

Lynayah Enthusiast
Lynayah
Posted

Hi, Everyone,

For those of you who have been following my threads (or for those I have yet to meet), I have been diagnosed highly gluten-sensitive, non-Celiac. Gene tests (DQ 2 and 8), and biopsy negative.

Something haunts me, though. For nearly 10 years, I had reoccuring sores in my mouth -- slits that would appear out of nowhere and hurt like heck. Thay are gone now, thanks to eating gluten-free.

My question: Are sores in the mouth a symptom of gluten-intolorance as well as Celiac . . . or Celiac only?

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

Celiac.com Sponsor (A8-M):


nasalady Contributor
nasalady
Posted
For those of you who have been following my threads (or for those I have yet to meet), I have been diagnosed highly gluten-sensitive, non-Celiac. Gene tests (DQ 2 and 8), and biopsy negative.

Something haunts me, though. For nearly 10 years, I had reoccuring sores in my mouth -- slits that would appear out of nowhere and hurt like heck. Thay are gone now, thanks to eating gluten-free.

My question: Are sores in the mouth a symptom of gluten-intolorance as well as Celiac . . . or Celiac only?

Hi Lynayah,

I asked the same question several months ago....were all of the same symptoms experienced by those with celiac disease and with non-celiac gluten intolerance? The answer I got was "yes". There is no way to differentiate the two disorders based on symptoms.

It sure would be nice though, wouldn't it?!? :)

BTW, I'm one of those radicals who think that NCGI and celiac disease are the same thing; that maybe NCGI is an earlier stage or something.

There are LOTS of people here who agree, and there are LOTS of people here who disagree. :)

Take care,

JoAnn

ravenwoodglass Mentor
ravenwoodglass
Posted
BTW, I'm one of those radicals who think that NCGI and celiac disease are the same thing; that maybe NCGI is an earlier stage or something.

There are LOTS of people here who agree, and there are LOTS of people here who disagree. :)

Take care,

JoAnn

I am one who agrees. With the high rate of false negatives in testing I really don't think even the doctors can say with certainty that they are not one and the same. There are also more than just DQ2 or DQ8 involved with celiac, in the US 7 more genes have been recently acknowledged and if you look into research in other countries some of them have been recognized for quite a while. My gene, DQ9 is an example. It is rarely found in the caucasian population and here is considered a gene for RA by most doctors but is considered a celiac related gene in other countries. IMHO to much emphasis is placed on trying to catagorize us as either NCGI or celiac. It is not like folks that are considered 'just' intolerant are not doing damage or have to be less strict.

Nancym Enthusiast
Nancym
Posted

I used to get canker sores a lot. Started as a kid, continued into adulthood but not as frequently. AFAIK I am gluten intolerant, none of my testing for celiac came back positive but I didn't test until after I went gluten-free.

Lynayah Enthusiast
Lynayah
Posted
  • Author

Interestsing! Thank you for the replies.

rueyn Apprentice
rueyn
Posted
Something haunts me, though. For nearly 10 years, I had reoccuring sores in my mouth -- slits that would appear out of nowhere and hurt like heck. Thay are gone now, thanks to eating gluten-free.

My question: Are sores in the mouth a symptom of gluten-intolorance as well as Celiac . . . or Celiac only?

Perfect timing on your question! I'm NCGI, and I used to get those sores a LOT throughout childhood and into adulthood. I hadn't had one in over a year, but despite being gluten-free since May I had one pop up a few days ago. Since I know I haven't been glutened I'm 99.9% sure that it's not related to gluten, but rather stress (thanks, holiday season!).

That's my 2c :)

Lisa Mentor
Lisa
Posted
https://www.celiac.com/articles/21858/1/Cou...ease/Page1.html
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


gf-soph Apprentice
gf-soph
Posted

Hi

I had recurring mouth ulcers all my life before I went gluten free, they came and went at different times seemingly without a pattern, but dissappeared completely within 2 weeks of going gluten free. I am NCGI as well.

Interestingly, they reappeared a couple of times after being glutened, with the gluten exposure being confirmed by raised blood tests. So not only are they a part of my gluten problems, but they are the first distinct indicator of gluten exposure for me. No idea why!

Sophie

  • 3 weeks later...
BigDogz Explorer
BigDogz
Posted

I really don't know if I'm NCGI or Celiac since I had already gone gluten-free on my own and was unable to complete the 6 week gluten challenge needed for a colonoscopy and/or bloodwork. I made it only 12 days back on gluten and had such horrible diarrhea and felt so wretched that I refused to continue and went back to being gluten-free. As far as I'm concerned the NCGI vs. Celiac is just semantics. IMHO, NCGI is just Celiac caught "early", i.e. before the villous damage can be done. I consider myself a Celiac and when I need to explain my dietary needs, I tell friends, family, servers, etc. that I'm a Celiac. Sure saves a lot of confusion.

Like the other posters, I'd had canker sores on a semi-frequent basis since I was a child but I noticed that it got REALLY bad for the year before I went gluten-free. Not only did I have ulcers that were huge and deep but they took forever to heal. In fact, I'd barely get one healed up before the next one broke out and it wasn't unusual for me to have more than one at a time. And talk about painful!!!

I've been gluten-free since May '09 and I've had just one very small ulcer since then...and it was after getting inadvertently glutened. Come to think of it, my gums used to bleed horribly after brushing my teeth but they haven't been doing that since going gluten-free!

Eric-C Enthusiast
Eric-C
Posted

As the years wore on I got canker sores twice a year, at the season changes, along with the flu or a cold.

Since going gluten-free, not a single one or a hint of one.

ktnhsv Newbie
ktnhsv
Posted

I was reading last night about too much Candida can cause mouth ulcers/sores. Read up on it if you haven't. Do you take a probiotic?

Lynayah Enthusiast
Lynayah
Posted
  • Author

I, too, have had great luck with the sores going away! The only time one will pop up is when I accidentally gluten myself.

Chell Newbie
Chell
Posted

This is something I need to share with my mother. Just today she was complaining about the sores in her mouth. I keep trying to get her to get tested because she has so many symptoms.

How long after going gluten-free did it take for your sores to start healing? I'd like to have something to tell her that she could look forward to as far as a time-frame. I keep telling her how important it is to find out for certain if she has this and how important it is for her to go gluten-free but she doesn't get it. I keep telling her how much better I'm feeling now. I don't know how to get through to her.

gf-soph Apprentice
gf-soph
Posted
This is something I need to share with my mother. Just today she was complaining about the sores in her mouth. I keep trying to get her to get tested because she has so many symptoms.

How long after going gluten-free did it take for your sores to start healing? I'd like to have something to tell her that she could look forward to as far as a time-frame. I keep telling her how important it is to find out for certain if she has this and how important it is for her to go gluten-free but she doesn't get it. I keep telling her how much better I'm feeling now. I don't know how to get through to her.

My mouth ulcers took 1-2 weeks maximum to heal after going gluten free. When I was accidentally glutened I had a flair-up of multiple ulcers coming up at once, but they healed pretty quickly (before going gluten-free they would take weeks to heal even with treatment).

It may take longer for others depending on their general health, but it was quick for me.

Good luck for your mum :)

Lynayah Enthusiast
Lynayah
Posted
  • Author
This is something I need to share with my mother. Just today she was complaining about the sores in her mouth. I keep trying to get her to get tested because she has so many symptoms.

How long after going gluten-free did it take for your sores to start healing? I'd like to have something to tell her that she could look forward to as far as a time-frame. I keep telling her how important it is to find out for certain if she has this and how important it is for her to go gluten-free but she doesn't get it. I keep telling her how much better I'm feeling now. I don't know how to get through to her.

For me, they went away the minute I went gluten free. Merry Christmas!

Hugs,

Lyn

Chell Newbie
Chell
Posted
My mouth ulcers took 1-2 weeks maximum to heal after going gluten free. When I was accidentally glutened I had a flair-up of multiple ulcers coming up at once, but they healed pretty quickly (before going gluten-free they would take weeks to heal even with treatment).

It may take longer for others depending on their general health, but it was quick for me.

Good luck for your mum :)

Thank you!

Chell Newbie
Chell
Posted
For me, they went away the minute I went gluten free. Merry Christmas!

Hugs,

Lyn

Thanks Lyn! Merry Christmas to you!!!

Archived

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

Go to topic listing

  • 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
      - Scott Adams replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      IBS-D vs Celiac

      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that y...
    2. Scott Adams
      - Scott Adams replied to Amy Barnett's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Question

      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid mul...
    3. Scott Adams
      - Scott Adams commented on Scott Adams's article in Multiple Sclerosis and Celiac Disease
      2

      Gluten-Free Diet Linked to Reduced Inflammation and Improved Outcomes in Multiple Sclerosis (+Video)

      Better to know late than never, and it is too bad they did not test you for it earlier!
    4. Scott Adams
      0

      Koikoi Trading Inc., Issues Allergy Alert on Undeclared Wheat and Sesame in FU ZHOU FISH BALL

    5. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

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

      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after eating them. If it happens a few times after eating the same foods- I cut back...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,321
    • Most Online (within 30 mins)
      7,748
    James Minton
    Newest Member
    James Minton
    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

    • Scott Adams
      IBS-D vs Celiac

      By Scott Adams · Posted

      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
    • Scott Adams
      Question

      By Scott Adams · Posted

      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      IBS-D vs Celiac

      By trents · Posted

      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in hospitals or institutional care and I'm guessing your physician would be willing to grant you a diagnosis of gluten sensitivity (NCGS) even if your celiac testing comes up negative. Also, you need to be aware that oats (even gluten free oats) is a common cross reactor in the celiac community. Oat protein (avenin) is similar to gluten. You might want to look at some other gluten free hot  breakfast cereal alternatives.
×
×
  • 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.