Kickas.org Forums Treatments, Drugs and Alternatives NSD and diet-related; Ankle flare

Hi everyone,

I was diagnosed with AS in January 2014 and have been on the NSD/paleo diet now for 5 weeks. I have noticed a significant improvement in my pain and stiffness, especially in the first two weeks. I am really excited to continue this diet and see if it can put me in remission and get me off NSAID's.

The problem is that my ankle has been swollen now for about 6 days and I'm wondering if I accidentally ingested some hidden starch or possibly a "fringe" food. I have been very strict with the NSD and have even gone to more of a paleo route by cutting out milk, nuts and nightshades. The only paleo item I have not stopped eating is eggs which I think I will now stop.

I was wondering if anyone who has had success with the NSD/ Paleo diets have experienced a sudden ankle flaring? I don't read much about people referring to their ankles flaring on this site so that is why I am asking. I am wondering if this swelling will subside once the "flare" passes or will it stick around for awhile?

It seems strange to me how this happened because the main area that I usually flare at is my SI joints and they feel fine. I actually feel really good compared to before starting the diet so that is why I am confused about this sudden flare in a different area (my ankle). I have had a swollen "sausage" toe on the same foot since the diagnoses so maybe it's related.

I am going for a routine blood test today so my rheumy can see where the inflammation markers are compared to my last visit. Before the diet (about 8 weeks ago)my ESR was 30 and my CRP was 42. After about a week on the diet I had a blood test done and the ESR had fallen to 15 and the CRP was 13, quite a big improvement. I'm wondering if this ankle swelling will show up on these markers today.

Has anyone else noticed a sharp decrease in their ESR/CRP after starting the diet?

I have been following this forum for 6 weeks now and I have learned a great deal about AS and all things related. Many thanks to all the great people on this forum for sharing their ideas in order to help others.

Any responses are greatly appreciated.

Thanks!

I don't get the sausage digits, visibly swollen joints, but I do get enough fluid in the joints that my chiro, PTs, interventionalist / physiatrist can feel the swollen tissue, I can too for some joints, as they taught me how to tell.

But even the joints that aren't visibly swollen, still inflammation and fluid.

And yes to ankles. Heels and feet as well.

When a new rheumy asks me which joints are most affected, I half jokingly say "well, my elbows have always been pretty good." That's not far from the mark. It sure does move around….crazy isn't it!

If its just one joint, I find ice packs to be a good quick treatment. Or if its hands / wrists or feet / ankles, contrast baths are even better.

Ultrasound (used to do at PT, now I have a home unit) also help me.

If its all over, the ice, the ultrasound aren't as good a choice as an anti-inflammatory drug, but if its just one joint. Then local treatment can help.

I also like the blue icy gel and like my triple NSAID creme that the compounding pharmacist puts together for me, prescribed by my rheumatologist. Its KIP gel (ketoprofen, ibuprofen, piroxicam).

Hi Sue, thanks for the reply!

Before I was diagnosed and was still eating LOTS of starch, I had several different areas become inflamed, like my shoulder, knee, neck etc. I never knew what I was going to wake up to! The good part is they all seemed to disappear within a week or so. The constant one has always been my SI joints, until I went NSD/paleo. The ankle swelling is a first for me, and I guess because it is so pronounced (swollen), I was beginning to panic a little.

Thanks for some great suggestions. I like the sound of a contrast bath to help reduce the inflammation/swelling. I think I will try this over the next few days. I am still on an anti-inflammatory for now until I see my rheumy in a couple weeks, but my ultimate goal is to try and get off them.

Be well!

Hi Yrok
I've had a sore and swollen calcaneal cuboid joint (google it to get an image)in my foot, not really my ankle but the pain certainly extends to my ankle. It settled with my recent change to a NSD diet. Tested dairy recently and that seemed to make it worse so have omitted dairy as well. Also avocados unfortunately. So now with no dairy or avocados (and essentially a paleo diet) there is very little pain. Phew. If your pain is lower now perhaps you can start testing (omitting then adding again) foods that you eat regularly? Good luck!

Dear Yrok,
I have a very similar situation. I started NSD two weeks after my first symptoms. Since then, I have had very little problem with my back, but on the other hand one constantly swollen finger (middel on my left), and since August, one swollen toe (the second on my left). Reading up on symptoms, these things seem to correlate with psoriatic arthritis, which is also HLA-B27 connected, so it is interesting that you have been AS diagnozed.

Do you have any psoriasis in the family (I do)? Are you HLA-B27 + (I am)?

I recently did the ALCAT food sesitivitites test, and have since ventured to dare things I have not eaten for a year: milk product - goat milk kefir, avocado, a few walnuts, tahini. I have lately had less sweelling in my toa and finger, but on the other hand problem with my back again.

Can it be that different foods just move the inflammation around in your body?

Any thoughts on the above welcome.
Best,
Loha

Thanks for the thoughts copen.

I don't know why it took me so long but I looked up the side effects of NSAID's, particularly the one I am on (diclofenac) and sure enough...swelling of feet/ankles is a common side effect. I just got back from my GP and he basically confirmed it. I did do a blood test to rule out gout but he is pretty confident that it is the NSAID. I had planned on trying to get off them soon anyway if positive progress with the NSD/Paleo diet continued so now I may just have to step it up a couple of weeks.

I know what you are saying about avocados. I ate one a couple of weeks ago along with a zucchini and I had a 3 day flare. I'm not sure which one did it but I'm staying away from both for now...milk too.

I'm excited now to see how things go without being on NSAID's. Hopefully it's not too soon to come off them.

Nice to hear you are having success with the diet as well. Keep it up!

Hi Loha,

I do not have any psoriasis in the family but it was a good connection you made and could still be plausible. From the reading I have done on AS, apparently "sausage" toes are fairly common in AS. My rheumy used that as one clue as well as my HLA-B27+ status and an MRI showing sacroiliitis to diagnose me. I was having a difficult time with the pain in my SI joints while I waited for a diagnoses and never thought to investigate AS because I was being told it was probably Reiter's syndrome (reactive arthritis).

That is interesting how your back pain came back when you started to introduce different foods back in even as your finger/toe went down. Was your finger/toe swollen right from the beginning? My toe has been swollen since day one.

I know from reading other people's post here that the diet seems to be highly specific to one's own body setup. What works for one person doesn't necessarily work for another. I think the common ground is the obvious starches like potatoes, bread, cereals, pasta, and rice but then the rest has to be tailored.

I have only been doing this for about 5 weeks so I am still at the beginning of this journey but I decided to just go all out and do NSD and Paleo to try and rid myself of the NSAID's as quickly as possible.

Do you take any medication?

How long did it take for you to stop taking the medication once you started the NSD?

It sounds like you have done well to rid yourself of the back pain but maybe there is something that you are still missing that will take care of the finger/toe swelling. I read another post on here mention that too much "sea" fish was the problem due to contaminants. I think the important thing is to keep the inflammation in the body as low as possible so that further damage is avoided. I hope to get my ESR and CRP back into normal levels very soon.

I have thought about doing the food sensitivities test myself but I have read many people say it did not help them very much so I have resisted.


All the best...keep your success going with the NSD. Let me know if you solve the puzzle for your finger/toe swelling.

A lot of the NSAIDs cause non-pitting edema in me. No visible swelling, unless I take a lot, but edema none-the-less, which makes the inflammation a lot worse. Yes, edema a very common side effect for the NSAIDs.

For me, either they work but I get edema and gastritis (Aleve, Ibuprofen, Vioxx) or they don't do very much at all (a bunch more of them, can't remember them all).

For me, the only things that truly work are prednisone (but not a long term solution due to its long term side effects) and Humira.

Good luck with everything!

Hi Sue22,

Turns out my ankle swelling is probably a flare from AS as my latest blood tests showed a pretty significant spike in ESR/CRP numbers. It is frustrating because I know I have been very strict with diet, and I have looked over my journal many times to try and find the culprit.

It may be that my initial rapid success with NSD just happened at a time that I was not flaring so I felt much better during that time. I don't really know what else to think other than that. I have been in a bad ankle flare now for over two weeks and diet does not seem to be helping it (or NSAID's!).

Maybe my gut needs a lot of work and it will take some time. The problem is I am fearful of joint destruction due to swelling. The longer the flares sit in the joint, the more damage it's doing to them.

I see my rheumy next week so I will ask him what he thinks about the ankle. I know the last time I saw him he suggested I start thinking about Humira. Maybe I need it to get my body back to a reasonably healthy state while I work on repairing my gut with NSD.

Anyone have a similar problem while doing NSD at the beginning?

Any thoughts on the Humira/NSD combo approach?

Thanks!

Hi Yrok
Along with my sore foot (cuboid joint, plantar fasciitis) I had swollen toes (initially) and more recently, a couple of fat fingers. They seemed to go down when I eliminated all sugars (sugar, honey, dried fruit especially dates). And the pain in different areas does seem to be somewhat related to different foods (dairy = sore feet, avocado= sore knee, alcohol = sore hands). So all I can suggest is; keeping looking for other, specific food intolerances. I took my diet back to beef and spinach only for a few days then when the pain was low added back one food at a time. My version of an elimination diet. Helped me figure out the avocado, dairy, dried fruit and honey. Good luck and keep going!