Relentless mouth ulcers with no known cause

Oral and dental care
1

I’ve been suffering miserably with mouth ulcers for months. On the inside of the cheeks, under the tongue, behind the bottom lip, on the gums, and even on the sides and tip of the tongue. Each wave is of at least 20 and at its height, I had around 50 at once. They tend to be in clusters, with most being behind my bottom lip. They start as little bumps and then break out a few days later.

Some facts:

  • It started about 2 weeks after I recovered from a cold, no more intense than any other I’ve had
  • I have no symptoms of illness apart from these ulcers
  • I don’t smoke
  • It’s not caused by trauma
  • I’m not particularly stressed
  • I’m male, so unlikely to be hormones
  • I have no family history of coeliac disease, Behçet’s disease, Crohn’s disease, ulcerative colitis or mouth ulcers in general
  • I’m not taking any medication
  • I don’t have a suppressed immune system
  • I had covid about a year ago, and it was very minor. I’ve had no lingering symptoms.
  • I’ve had the following vaccines: all of the routine ones as a kid, plus the 2 main covid shots, 3 doses of Hepatitis B and 1/3 of HPV - afraid to take the remaining two.

I’ve seen 4 different doctors and none of them have a clue. Here’s what I’ve tried:

  • Having a blood test. All clear. No infections, vitamins ok
  • Boosting my iron absorption by taking iron and vitamin C supplements, and majorly reducing caffeine consumption
  • Taking a multivitamin
  • Aciclovir tablets. I don’t have cold sores, and they did nothing.
  • Cutting out chocolate, coffee, fruit and alcohol
  • Ensuring my toothpaste doesn’t contain sodium lauryl sulphate
  • Not using mouthwash
  • Not chewing gum
  • Not eating spicy food
  • Not using filtered water, in case it’s being contaminated

Here’s what I haven’t tried:

  • Diagnostics for intestinal symptoms (colonoscopy, etc)
  • Avoiding gluten
  • Mouth swab for infection which isn’t in the blood
  • Avoiding my water supply
  • Starving myself

What it could be:

  • Coeliac disease, Crohn’s disease, Behçet’s disease or some other autoimmune condition, though I’d expect additional symptoms
  • Very selective and persistent reactive arthritis to that cold
  • Recently-contaminated water supply
  • Mouth infection causing no other symptoms and not being in the blood

Other than the ulcers, I feel perfectly fine in myself. I’m doing nothing different to what I’ve always done. Nothing has changed in my life recently. I refuse to accept that I’m the only person on the internet with this condition - any ideas?

2

Auto immune conditions or gastrointestinal conditions are definitely at the top of the list of causes even ones you don’t normally associate with the mouth such as Rheumatoid Arthritis.

Avoiding SLS in your toothpaste is a good first step.

Ask your doctor if you can safely take L-Lysine supplements as the daily dose seems to help keep them away in some people who suffer from chronic apthous ulcers like you describe.

I’ve had good results in healing them slightly more quickly from rinsing with 1.5% hydrogen peroxide such as Peroxyl mouthwash.

Have you seen your dentist and asked your hygienist for ideas?

3

Annoyingly, my dentist is 2 hours away and I haven’t been able to register with a new one since I moved to this area, because all of the nearby ones are saying they’re not taking on NHS patients, despite advertising the contrary on their signage. I was also not referred to a hospital dentist upon request but I’ll ask again when I visit my GP next.

Regarding L-Lysine, these ulcers only started a few months ago. I typically get an ulcer or two when I’ve been unwell, but this is lasting for months and I get 20-30 in each ‘wave’ so I’m not sure whether to categorise it as chronic or not as it hadn’t happened like this for over 24 years

4

I had relentless mouth pullers particularly on the tongue, I tried every treatment available to no avail. I started to change my diet as I discovered a few years ago that grapefruit juice was causing my ulcers in my throat. This time I discovered by accident while on holiday that the ulcers stopped when I didn’t use artificial sweeteners in hot drinks. After a little research I also found the same sweetener was in the flavoured water I drank and the low cal jelly. No ulcers for 5 months now.

5

Visit a dentist and get full workup by your PCP.