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Joined: Jan 2010
Posts: 225
M
Second_Degree_AS_Kicker
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Second_Degree_AS_Kicker
M
Joined: Jan 2010
Posts: 225
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" grin ).
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 !!
Xxx hugss
Marion

Joined: Mar 2013
Posts: 135
J
Journeyman_AS_Kicker
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Journeyman_AS_Kicker
J
Joined: Mar 2013
Posts: 135
Great story! Thanks for posting, it is inspiring.
/Loha


AS since February 2013
NSD - as of yet no medication.
Joined: Mar 2002
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Quote:
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.


I concur... but after a year on the diet, I no longer found it an annoyance.

As you are still on medications, that may still help mask some of the minor pain. If you go medication free may want to revisit the following foods as I call them fringe foods... some can eat them without issues, others cannot>

- Avocado - I always have issues
- Asparagus - I have no issues
- Almonds - I can eat in moderation
- Dairy - I can eat organic yogurt and some cheeses

Best to you on continued path to healing.

Tim


AS may win some battles, but I will win the war.

KONK - Keep ON Kicking
Joined: Apr 2009
Posts: 1,595
Gold_AS_Kicker
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Gold_AS_Kicker
Joined: Apr 2009
Posts: 1,595
Great news Marion! cheerleader

I have been NSD for 4+ years now and I will never be painfree (30 years of damage before I discovered this great place...) but what I have now is mostly mechanical pain from degeneration secondary to the ravages of AS.

The awful gnawing constant ache and that dreadful stiffness is mostly under control. I rarely get those sudden killer muscle spasm episodes, either. shocked

These days I ease up a bit on the diet sometimes, which makes socialising with friends much easier. I still have to be careful not to overdo it on the fringe foods, but it's brought a livability that I had lost before due to the amount of pain and stiffness I had on a daily basis.

I basically stay NSD day-to-day, but every now and again, I have a small (2-3 tablespoons) of well washed rice or some sushi, which I love heart too! (I used to live in Japan... smile )I will have one bite of a cake just to taste and that's enough for me. I find that I'm best if I keep my diet as clean as possible and that's what allows me to have occasional transgressions.

If I get a bit sore from over-indulging, it goes away after a day or so. blush

I am no longer on any opiate medication, am exercising more and coping with the demands of a physical job much better! My core strength is fantastic, too. smirk

The diet has helped many and although it has not been a Miracle Cure for me, I no longer worry each day how I am possibly going to get to my "use by" date! laugh


Louise

Happy to be a physio by day, not happy to be a Spondy 24/7! wink3
Joined: Mar 2012
Posts: 751
Magical_AS_Kicker
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Magical_AS_Kicker
Joined: Mar 2012
Posts: 751
Yay for your progress and congrats on your juice fast! I did a 14 day juice fast last year and it changed my life!!

I am so happy to hear of your progress.

I eat a very similar diet, the only starchy things I allow from time to time are zucchini & carrots. Otherwise, grain free, dairy free, refined sugar free (yet still lots of honey, dates & maple syrup), very low starch.

I do find when I over do it and work very hard, catering, events, classes, and then stress adds up my pain and fatigue is always there waiting in line! But I just took it easy for a couple days, and am feeling better again. Though I have a big dinner I am catering this weekend. I have to say, I think I am going to start juicing through the big catering and work events - it just gives me SO MUCH MORE ENGERGY!!

xoxoxo


I'm now a KICK AS (and Kick IBD) success story!! After going low starch Paleo to heal my gut, I can now eat nearly all starches, grains & foods without inflammation, flare-ups, or pain. I used a modified SCD diet approach (minus dairy! plus cacao ♥). Cheers to healing & thriving again! I blog at http://www.forestandfauna.com/about/
Joined: Feb 2013
Posts: 16
A
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Joined: Feb 2013
Posts: 16
congratulations Marion! That's so inspiring. Thanks for sharing your story with everyone. Hope you will continue to have succes.
All the best to you!

Almond


Diagnosed with Spondyloartritis in 2011. HLA B-27 positive. Started no starch diet in the end of 2011. Been (almost) without medication since that moment. I was a sceptic. I'm a believer now: 'let food be thy medicine'. For Dutch readers: read my story on: http://almondfigtree.wordpress.com/

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