Hello everyone !!
I fancied posting a little update on my NSD journey but don't want to post it under the success story thread as I haven't reached my goal yet and wouldn't want to jinx it...
My goal is : to be pain-free and drug-free. Pain-free : check ! Drug-free : half a check.
Basically, just to sum up, I'm 28, female, first symptoms of AS 11 years ago, properly diagnosed 8 years ago, been on and off NSAIDS ever since, tried Sulfasalazine, didn't work, have been on Methotrexate for 6 years (the liver killer yey !!) and on Enbrel for 3 and a half years (worked wonders).
However, I'm sick of being on drugs, being scared of the side effects, I know I can't get pregnant which might be a problem in the next few years, can't get vaccinated hence can't go to certain countries... So with my rheumy we decided to try and wean me off drugs which started fine, but symptoms started coming back after a few weeks.
That's when I came back to this forum and stumbled upon info about the NSD and was desperate enough to think "I haven't got anything to lose". (If I say desperate it's only coz I'm French and we are not very open about "alternative diets". To a lot of my countrymen, vegetarianism probably should be classed as a "mental illness"
So I started the NSD mid-march and within days I had noticed changes in my pain (not how much pain but just the nature of pain) so I knew straight away it was linked to what I ate.
After 4 months on the NSD here's what's changed :
- I stopped NSAIDS alltogether (from 7.5mg Meloxicam most days)
- I cut my Methotrexate by half (from 15mg once a week to 7.5)
- I cut my Enbrel by half (from 50 mg once a week to 50 mg once a fortnight)
- I had had tendinitis in my right wrist for the past 2 to 3 years that even NSAIDS did nothing for : that's gone completely (confirmed by rheumy and imagery)
- I am pain-free 98% of the time
- My sedimentation rate has gone from 18 before NSD to 8. (Below 10 is "normal value").
I saw my rheumy in June and he was pleasantly surprised by it, he had never heard of it but said AS is very linked to food and as long as I'm feeling better and not developping any deficencies I've got the green light from him. Wouldn't be surprised if he mentions it to some patients...
We have agreed together to keep weaning myself off drugs, so if everything goes well I should be off the Enbrel by the end of the year and then off the methotrexate in the following months (fingers crossed !!).
At first I eliminated all dairies and tested absolutely everything, but I grew tired of it, especially as I was on holidays and eating out nearly every meal so I decided to relax the diet a bit. I haven't tested anything since but here's what I eat and haven't reacted to any of it so far :
- all fruit except bananas (unless the skin is completely black) and red grapes
- lettuce, rocket, kale, cabbage, broccoli, spinach, asparagus, artichoke, cucumber, fennel
- tomatoes, peppers (not the green ones), chilli peppers
- avocados (very ripe)
- all meat and fish and eggs(good quality, not processed, buy at butcher"s and fishmonger"s, organic or farmed or wild when possible)
- dairies : cheese and yogurt but try and have regularly sheep's and goat"s cheese and yogurt, so it's not always cow's milk, coconut milk, bit of creme fraiche and butter in cooking
- almonds, baked goods with almonds, dates, figues, raisins, prunes, sesame seeds...
- honey (sometimes some sugar when I'm baking but avoid it the rest of the time)
- a bit of chocolate every now and then
- alcohol : beer, wine or rum that i mix with fresh fruit juices yum...
- virgin good quality olive oil
- no processed food or ready made sauces apart from mustard, which is good quality and starch free here.
Even though I've never suffered from digestive issues, I don't feel bloated like i used to, and lethargic after a meal.
I am now on day 13 of a 14 day JuiceFast ("Fat, Sick and nearly dead" stylee) and this has reinforced me in my desire to eat a diet mostly plant based, with small portions of good quality meat and fish, small portions of dairies and occasional baked goods as treats (baked by MOI)... Next step is to buy a yogurt machine and make my own 24h fermented yogurts with lots of differents milks (cow, goat, sheep, coconut...) to bring good bacteria to my gut...
I feel brilliant on this diet, and even though it can be a Massive Pain, especially when socializing, the benefits far outweigh the "annoyance" for me.
Once I'm off the meds, I'll see if I can have some not too starchy foods every now and then maybe like courgettes, butternut squash, carrots, aubergines, sweet potato. I think I'll try sushi as well as a) I love it (probably the only food i truly miss) and b)a lot of the starch is meant to have been rinsed off.
If i find i can tolerate an occasional small amount of starch I think it would make my life easier, especially when eating out or at other people's house. However if I can't, oh well, I'll just continue to be considered by family, friends and waiters like a "weirdo"... (Only joking for the family they have been very supportive, and the BF has been amazing)...
Hope I haven't bored everyone to death but I'd like to thank everyone that ever answered any of my questions on this forum, thanks for your support, I wish all the best to everyone !!