Hi all. I feel I must share my success with diet.
PPMS dx 20 years ago, but only 2 years ago decided that there must be something still triggering inflammation in me, and endeavoured to find out what is was. To my nutritionist, gluten was the most obvious one to try first. She told me that gluten is very difficult for the body to break down, and since it can stay in the system for up to 6 weeks, any trial must be at least this long.
Following this, I tried laying off my anti-inflammatory drug to see what would happen. The last time I tried this I had my first experience of trigeminal neuralgia - short, stabbing electric shocks in the teeth - and this went away again when I took the drug. TGN in MS is caused when sensory nerves to the face have become demyelinated and short circuit, so sensations such as touch or heat are received on the pain pathway. It is variously termed the suicide condition, and the worst pain known to medicine. I can vouch for it being very painful.
Anyway, there was no reaction to coming off the drug, so I stayed off it. I occasionally tested a little gluten, sometimes by accident,sometimes on purpose, and sure enough the TGN returned each time exactly 2 days after ingesting the gluten and faded over the course of 1 to 2 weeks. In this way, each time I became further convinced of the link between gluten and this inflammatory response. In the last test that I did, I ate a burger bun (hey, I was at a festival and everyone was doing it!). The attack lasted for 2 months and instead of short electric shocks, this time the feeling of 20,000 volts through one side of my face lasted 1/2 hour each time. Painkillers don’t work for TGN, and my GP prescribed an anti-epileptic drug, which at the lowest dose made me incredibly weak, so I endeavoured to ride it out without the drug. Thinking about what my nutritionist had told me, I was prepared for it taking many weeks for my body to rid itself of the gluten and for the inflammation to die down.
Aside from short-lived but painful discoveries that rice wine and soy sauce have gluten in them, I am TGN free. My neuro-consultant agrees that diet has ‘cured me’ of TGN (his words), and my last MRI scan since giving up gluten shows that my MS is not active. I’m not sure what that means, but it is surely better than MS being active. Pain free, inactive MS and saving myself a lot of money by no longer buying an anti-inflammatory drug, I call that a success!
What I’ve tried to describe here is irrefutably down to gluten for me. Different MS’ers may have different triggers, but gluten intolerance is terribly common and I don’t think there’s many nutritionists with a good word to say about it.
It is exciting to think that I may have found my trigger for MS inflammation. I continue to work with my nutritionist, who I think is very skilled and I thank every day.for the progress I have made. Based on the Banting diet, which is related to the paleo diet, today I feel I have better energy than I can remember, without the rollercoaster of bad days and good days. I no longer feel the need for a nap during the day and my psoriasis has vanished (not MS, I know, but another autoimmune condition nonetheless). Who knows what more I can achieve.