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Do You Get Canker Sores Or Chapped Lips?


PeachBlossoms

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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 :-)


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    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
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      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  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.
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