MCAS and Dentistry. 13?…make that 15… cavities

And that’s in addition to the six I had fixed this time last year. Today I’m going to get the first half done, I’ve got another appointment next week for the others. Getting my cleaning a couple of weeks ago turned up the pain in them, to the point where it was constant hum. I know that getting them done will reduce my pain in the long term, but I am NOT looking forward to it.

Admittedly, the cavities are mostly very tiny, but several of them hurt, and I have a crown replacement that could be rough. The cavities are on an unusual part of my teeth. They’re right along the gumline, on the outside of the teeth. This is the largest, and most obvious one. A chunk of tooth that was hiding it chipped off a few weeks ago, which made it much more sensitive and obvious.

My odd little cavities. Dry mouth appears to be the culprit.

Any patient with chronic health issues and malnutrition is vulnerable to increased tooth decay. Masties seem to be particularly prone to dental issues. (If you want cited scientific information, Lisa at Mast Attack has been doing a great job answering questions based on published scientific papers; here’s her post on mast cell diseases and dentistry.) 

Here’s a quick summary of the ‘general’ consensus, based on the literature, other patients and my own experiences:

  • we tend to have fragile, weak teeth. (I broke a molar driving on a gravel road… I mean seriously, who does that!?).
  • Frequent vomiting makes it even worse (fortunately, not an issue for me)
  • we have teeth that are too big for our jaws (again, that is common, but those with EDS take it to the next level)
  • our teeth move easily. It makes orthodontics much quicker (yeah!), but not last as long (boooo…).
  • we tend to be overly tolerant of local anesthetics/freezing such as lidocaine. 
  • High doses and long term use of antihistamines dries out the mucous membranes. A dry mouth is VERY vulnerable to tooth decay.

My dental experiences

Going to the dentist used to be TORTURE. I would get horrible sores everywhere in my mouth, my gums would bleed, and fluoride took every ounce of my willpower to not throw up and throw those awful trays across the room. I loved the feeling of clean teeth, but i loathed going. One day (oh– when they were repairing the fractured tooth, I just remembered!) they used a dental dam. The next morning I woke up with a square rash on my face. We all had theories about why my mouth was so bad after seeing the dentist (dryness, low vitamin C, etc etc.), but we couldn’t figure out exactly why. The square rash left no question- I was allergic to latex. My mouth has been a LOT happier since I figured that out.

The next step in a happier mouth was when I stopped using commercial toothpaste. I don’t think I will ever go back. I prefer my homemade stuff to foaming bubbles…  (And yes, I’ll write up the recipe… soon. Watch for the Lotions and Potions posts…). I asked the dentist if the cavities were due to my homemade tooth powder, and he was very clear that my hygiene is excellent. (Enough that he wanted to know where I got my xylitol.). It’s definitely the dry mouth. He suggested I add coconut oil to my powder to make a paste- the oil can help moisturize, and it changes the acidity level. It has antifungal and bacterial properties as well. I guess I’ll just have to make more concoctions (so fun!!)

It’s clear that MCAS and EDS, as well as the medications to treat them, can cause a variety of dental issues. I think there’s more; I think that dental issues are a leading cause of an MCAS flare step up in severity. The literature is clear that a major physical or emotional trauma (car accident, an assault, an infection) can set off inflammatory and/or autoimmune disorders such IBS fibromyalgia, chronic fatigue syndrome, etc. The same is apparently true for MCAS. (unsurprisingly, because i think they are all strongly connected to  MCAS). In addition, I’ve heard many stories of those whose MCAS was escalated by dental work. Too many to discount.

The Benefit of Hindsight

One of my most severe increases in mast cell activation occurred in my first year of University. I’d been working all summer at an Easter Seal’s summer Camp. (Sleep? What’s that?) I was run down, and I had bronchitis. I had a week between camp and frosh week. Perfect time to have my wisdom teeth out. (Aye ya, If only I’d known). I ended up with an infection that went back and forth from my lungs to my tooth sockets. I was basically on antibiotics for five months… I was living away from home, and eating differently, and I lived in the most revolting residence. Being dumb and 18, I didn’t take great care of myself.

It went on and on. At the time I was actually diagnosed-(ish) with chronic fatigue syndrome. It was certainly nowhere near as devastating as can be for others, and fatigue was in no way a central characteristic for me at the time. This was 25 years ago, the doctor made it pretty clear that people with CFS are just lazy, so I wasn’t too inclined to add that label.

That year I developed dermatographia (literally ‘skin writing’), and my asthma vision got significantly worse. I took my first course of prednisone (steroids and I do NOT get along). I gained 30 lbs, and started to struggle with cold temperatures. Hindsight makes it very clear that that was one of my first MCAS escalations.

What works for me? 

  • Pretest as many things as you can. At my hygiene appointment, while they were working out what they were going to do, the assistant mixed up teeny bits of each of the three filling options he wanted to use. I put them on my tongue for a moment, and it was immediately obvious that there were two that were fine, one that wasn’t. Check the gloves, any packing material, etc.
  • no latex, no synthetic rubber. Watch for cords on drills, etc., and elastic bands around the tools for added grip
  • Pumice for polishing (it’s so much better than the strong artificial flavours of the others, I don’t know why it isn’t used all the time! )
  • laser gum sculpting (rather than a scalpel)
  • an emery board. The smallest sharp edge drives me to distraction. I didn’t tell u this, but if you have a little annoying burr from a little chip or something, a fine nail file works beautifully to smoothe it. I only do the teeny ones myself. I hate any rough surfaces in my mouth. (Your teeth and nails are made of the same material, so it makes sense).
  • a sonicare toothbrush. (My dentist suggested adding a water pic as well, so I’ll try that)
  • Premedicate as you normally would for a taxing experience.
  • Don’t be a ‘good’ patient. If u need a break, then take it. If you need more freezing, ask before you need it.
  • rinse your mouth with sodium chromoglycate (nalcrom/gastrocom). Hold it in your mouth, swish it around for a minute, then swallow (if you want). It works REALLY well to keep the tissues calmed.
  • ultrasonic scaling. Instead of scraping tartar off with a metal pick, they use an ultrasonic descaler. The sound is a bit rough, but it doesn’t actually touch the teeth or gums. And it takes half the time. That means a lot less dermatographia/pressure urticaria and bleeding, and a lot more comfort. I can’t imagine going to someone who only did old style scaling.
  • Watch your neck and jaw positions. It’s all well and good to give the dentist more room, but not to the point of dislocating the darn thing.
  • Meditation skills. NO, I can’t meditate when there is a drill in my tooth but i can keep listening to my body, facilitate pain flowing out, monitoring if im clenching or twisting something, etc. And that can help aboid too many things out of place.
  • A fragrance free office. One of the employees my dentist’s office is sensitive to scent, and my dentist has an anaphylactic allergy (shellfish I think?) They actually ‘get’ it.
  • Plan for ‘agressive rest’ afterwards. Preventing a flare is a lot easier that calming one.


Didn’t get this posted before I left this am. The appointment went very well. Preparation helped! They’re so careful, and the cavities are small, it was pretty tolerable. Back in two weeks for the next round, that might be harder- that previously broken tooth is going to need a crown, and the tooth may not be strong enough to make it work. For now, agressive rest awaits!

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