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

Do You Get Canker Sores Or Chapped Lips?


PeachBlossoms

Recommended Posts

whiterabbit Newbie

Hi everyone :-)

I'm a newbie and it's so wonderful to have stumbled across such a great website with a whole wealth of information and people whom share at least some of your mixed bag of emotions we all have from this roller coaster that life throws our way at times. I hope to make some great friendships along the way. :-)

I'm really interested to hear about people with celiac disease who also suffer from chronic canker sores. Back in 2006 I was referred by my dentist to visit a Peridontist because my gums were always red and I suffered from mouth ulcers numerous times and the dentist just wanted to be safe than sorry. The Peridontist put me on a strong dose of antibiotics for 10 days hoping that the infection I had would clear up but no, my gums were still a red colour. I then had a biopsy done and it was discovered that I had oral lichen planus. Now this isn't a common disease and there is also a lichen planus which comes out on your skin like your arms or legs etc.

I was referred to a specialist in Melbourne - btw, I'm a kiwi, whom I see - he comes out for a couple of days every month to ChCh and I see him depending on our my condition is doing between once a month or every six months. I just thought, gee, what rotten luck! As we all do. :-)

Then late 2007 I had a positive blood test for celiac disease and what I am wondering is, whether anyone else out there might have oral lichen planus but it simply isn't being picked up. I'm wondering too whether the onset of mouth ulcers was perhaps the first sign of celiac except I had no way of knowing, I didn't even know about the condition until quite recent. I have asked my specialist if there is a correlation between celiacs and oral lichen planus but he simply says, the old standard answer 'there is no medical evidence to suggest that there is' but it just seems funny that hey, I've been suffering from mouth ulcers for years and then later on down the track, discover they are in fact oral lichen planus and on top, I get celiac disease as well.

By the way, I have also been referred to a rheumatologist twice because I have such high inflammation in my blood suspecting lupus but that so far has been ruled out. I know with lupus you also get lots of canker sores. It would seem that many of these types of illnesses you get many of the same symptons but it just depends on which way the wind is going to blow for you.

I just wanted to share this information with people because like me, I had never heard of it until I was diagnosed with it and maybe there is someone out there two whom might benefit by knowing about such a condition exists.

Cheers,

Whiterabbit :-)


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



Celiac.com Sponsor (A8-M):



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. - trents replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      GI DX celiac despite neg serology and no biopsy

    2. - Roses8721 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      gluten-free Oatmeal

    3. - Roses8721 replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      GI DX celiac despite neg serology and no biopsy

    4. - Scott Adams replied to Ginger38's topic in Related Issues & Disorders
      5

      Shingles - Could It Be Related to Gluten/ Celiac

    5. - Scott Adams replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Challenges eating gluten before biopsy


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,474
    • Most Online (within 30 mins)
      7,748

    Silk tha Shocker
    Newest Member
    Silk tha Shocker
    Joined

  • Celiac.com Sponsor (A20):



  • Celiac.com Sponsor (A22):




  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Certainly, it would b wise to have a gene test done if your physician is open to it as it would provide some more data to understand what's going on. But keep in mind that the genetic test for celiac disease cannot be used as to diagnose celiac disease, only to establish the potential to develop active celiac disease. About 40% of the general population possess one or both of the primary genes known to be associated with the development of active celiac disease but only about 1% of the population actually develop active celiac disease. So, the gene test is an effective "rule out" tool but not an effective diagnostic tool.
    • Roses8721
      Had Quaker gluten-free oatmeal last night and my stomach is a mess today. NO flu but def stomach stuff. Anyone else?
    • Roses8721
      So you would be good with the diagnosis and not worry to check genetics etc etc? Appreciate your words!
    • Scott Adams
      As recommended by @Flash1970, you may want to get this: https://www.amazon.com/Curist-Lidocaine-Maximum-Strength-Topical/dp/B09DN7GR14/
    • Scott Adams
      For those who will likely remain gluten-free for life anyway due to well-known symptoms they have when eating gluten, my general advice is to ignore any doctors who push to go through a gluten challenge to get a formal diagnosis--and this is especially true for those who have severe symptoms when they eat gluten. It can take months, or even years to recover from such a challenge, so why do this if you already know that gluten is the culprit and you won't be eating it anyway?  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS--but those in this group will usually have negative tests, or at best, elevated antibodies that don't reach the level of official positive. Unfortunately test results for celiac disease are not always definitive, and many errors can be made when doing an endoscopy for celiac disease, and they can happen in many ways, for example not collecting the samples in the right areas, not collecting enough samples, or not interpreting the results properly and giving a Marsh score.  Many biopsy results can also be borderline, where there may be certain damage that could be associated with celiac disease, but it just doesn't quite reach the level necessary to make a formal diagnosis. The same is true for blood test results. Over the last 10 years or so a new "Weak Positive" range has been created by many labs for antibody results, which can simply lead to confusion (some doctors apparently believe that this means the patient can decide if they want more testing or to go gluten-free). There is no "Weak Negative" category, for example. Many patients are not told to eat gluten daily, lots of it, for the 6-8 week period leading up to their blood test, nor asked whether or not they've been eating gluten. Some patients even report to their doctors that they've been gluten-free for weeks or months before their blood tests, yet their doctors incorrectly say nothing to them about how this can affect their test, and create false negative results. Many people are not routinely given a total IGA blood test when doing a blood screening, which can lead to false negative interpretations if the patient has low IGA. We've seen on this forum many times that some doctors who are not fully up on how interpret the blood test results can tell patients that the don't need to follow a gluten-free diet or get more testing because only 1 of the 2 or 3 tests done in their panel is positive (wrong!), and the other 1 or 2 tests are negative.  Dermatologists often don't know how to do a proper skin biopsy for dermatitis herpetiformis, and when they do it wrongly their patient will continue to suffer with terrible DH itching, and all the risks associated with celiac disease. For many, the DH rash is the only presentation of celiac disease. These patients may end up on strong prescriptions for life to control their itching which also may have many negative side effects, for example Dapsone. Unfortunately many people will continue to suffer needlessly and eat gluten due to these errors in performing or interpreting celiac disease tests, but luckily some will find out about non-celiac gluten sensitivity on their own and go gluten-free and recover from their symptoms. Consider yourself lucky if you've figured out that gluten is the source of your health issues, and you've gone gluten-free, because many people will never figure this out.    
×
×
  • 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.