Spondylitis Association of America Forums General Discussion General Message Board for Ankylosing Spondylitis and Related Diseases Occipital-atlas-axis joints fused or not

Hi PsSpa

I never in my life had concerns about my nutrition I used to eat anything without reading the labels and only trying to keep a healthy weight but now this disease is making me read and understand a lot of about what we eat.
I started the strict AIP, I started with 36 hours fast and in only 3 days I am feeling and improvement on my left wrist and hand, knee a little improvement and neck still stiff, don’t know if it is a placebo or because of the diet but I don’t care
I am going to keep the same routine for about a week and in the meantime I am going to look how to add healthy extra calories because I am also loosing weight, I was reading about the coconut milk and would like to know your opinion about it, back in time I was taking almond milk but it does not have the calories I need.

Happy to found something is starting to work because so far the medicines did not much, anyway still waiting the biologics approval.

Thanks Alex

Hi Alex

Same here, I used to eat tons of stuff on the S.A.D. (standard american diet): coke, pizza, hamburgers, chips, etc. Now I don't miss any of that.
Getting diagnosed with spondylitis changed my diet forever and not only that, my lifestyle as a whole.
I would never want to go back eating "normal" foods regularly, whoever decided that eating artificial ingredients and ultrarefined products with all fiber and micronutrients stripped away, is supposed to be normal.

Actually 3 days is about the turnaround of the microbiome, so it is a good sign if you already noticed a few differences.
Good question about calories. I lost about 25 lbs myself from 150 lbs to 120-125 lbs on the AIP diet. My mom and my nurses/nutritionists were in panic about it but I personally never felt better! And I lost a bunch of visceral fat that is supposed to be unhealthy anyway.
I think the obesity in our society shifts the perception of a normal weight too much. Just my 2 cents.

During my first year on the AIP I consumed about a can of coconut milk a week. It turned out to elevate my cholesterol quite a bit, especially LDL, although not past the recommended threshold. There is also a lot of debate about whether high LDL cholesterol is actually that bad, apparently there are subcomponents LDL-a and LDL-b where only one is bad for us but the clinical tests don't measure LDL subcomponents. My peak HDL cholesterol (the good cholesterol) occurred during the first year of AIP.
The reason I bring up LDL-a/LDL-b is that there are some population studies on indigenous populations eating high saturated fat diet (largely from coconut) who has less prevalence of heart disease as compared to the western world, where we eat more carbs.

Personally I cut back on the coconut milk consumption to maybe a can a month or so? And it has stabilized my cholesterol on a pretty low level again which I am happy with. Also Trader Joe's has a low-fat coconut milk option, mostly coconut water with some fat, if that would be an option for you.

Here is a quick research talk on the link between diet and microbiome (dysfunction of the microbiome is likely causing spondylitis). The lecturer also addresses your question about caloric intake:

https://www.youtube.com/watch?v=MyoJ3Z02U_s&t=957s

The research on resistant starch/fibers is one reason I don't go full out no-starch and still eat some none-grain starch through AIP/Paleo.

Take Care,
PsSpa

Hi PsSpa

Great video I concluded that everyday more Dr’s are supporting the relevance of the microbiome in autoinmune/autoinflamatory diseases but there is still a lot of unknowns on that area.
I continued the diet with the improvement on the wrist/hand but the inflammation of the right knee has increased. Also I am starting to feel some symptoms that I relate to hypoglycemia, not sure yet but I think my body is missing the sugar and I am having a hard time doing the transition, will see how it goes the next days.

Thanks Alex

Hi Alex

During my first time on the AIP I had psoriasis flares 3 weeks in (?!) that I couldn’t explain which then subsided after a while and stabilized after 6-8 weeks. keeping up with all hidden sources of inflammatory compounds is not always easy.

My GI tract was rioting the first 6 weeks on the AIP before it was stabilized on the new diet. If you eat enough fiber (30 gr-35gr per day) then that will help. Also that keeps you feeling full. Avocado is a great source. Also all kinds of vegetables.

It took a long time before I started feeling improvements with my joints. Probably also synergistic effect with biologics which I had started 6 months prior to AIP.

The quickest signs of improvement for me was lower body temperature (I used to get really warm when I was inflamed), increased sense of wellbeing, less headaches (too little sleep used to generate that), clear nose/throat, no coughing and eventually subsided psoriasis. I almost completely clear of psoriasis these days.

To this day my GI gets unstable on yoghurt (the probititics I assume) and processed stuff like meat sticks.
Also through AIP I found out that gluten, many grains, added sugars and peanuts make me flare. I also found out that I can tolerate dark chocolate, wine, and cheese which was awesome.

Take care,
PsSpa

Yummy, dark chocolate, wine, and cheese all of them are delicious to me right now, anything different of what I am eating sounds like an exotic meal 😀
Right now I am taking the following
Breakfast: smoothie with strawberries, blueberries and coconut milk
Lunch/dinner: chicken or salmon( 2 or 3 times week beef), spinach, lettuce as salads
Snacks: orange, apple and sometimes carrots
2 or 3 EVOO per day

Pretty boring but if this work I will be more than happy to quit everything else. Anyway I am thinking to stick to it and then try to reintroduce other foods, cheese and chocolate would be great.

Thanks Alex

Hi Alex

There are many good recipes to try on AIP that might even change how you think about cooking. I wasn’t too good of a chef before AIP but became a better one during the diet since I had to cook everything.

Paleomom is a good source of recipes but also other sites. Basically if you think of a dish you would like to eat, type it in and add “AIP.” I made gyros, cauliflower risotto, liver pate, coconut curry, artichoke saute, nomato sauce with zucchini bolognese, whole roasted chicken etc on the AIP.

In the end of the day, the goal of AIP is to find foods that cause you to flare and to transition you to Paleo which is easier to follow long-term. Find a good indicator of what might be flares to you - pain, stiffness, swelling/inflammation - etc and monitor that as you reintroduce food one at a time. I spent about 8 months on the AIP before I cheated with Paleo foods the first time (went well) and then another 4-5 months before I went on Paleo for a longer time. Has been going well as long as I avoid foods I react to. Also if you will cheat over the holidays with certain non-Paleo foods you can schedule a lab test directly after the holidays to see how that affected your CRP.

Also - a cervical specialist that I saw today mentioned that there is a particular x ray you can do for a series of atlanto-axial joint images while in motion. So if you find that your joint is not fused then you could monitor it with this type of x ray. The cervical specialist also said that PT is not hurtful as long as you don’t do quick/sudden motions and don’t cause pain as you do it. Also acupuncture may help for stiffness.

In your case you might want to get inflammation under control with biologics and diet before you do too much PT.

Take care,
PsSpa

Hi PsSpa

Still hanging into the diet, the symptoms still there, let’s said some symptoms are been reduced or disappear (pain in lower back and sacroiliac, swollen knee, body temperatura and fatigue) and others are still the same ( neck pain stiffness, wrist pain swallow).
Also still trying to avoid loosing weight but I think I am reaching the floor around 132 pounds, let’s see.
Before my AS diagnostic I was reading about cervical issues and I know that there are a type of X-ray called digital motion x ray ( DMX ) but since my main problem is my limited range of motion I don’t see logic to going through this test, maybe when the inflammation is under control I can think about if, this video explain the procedure
https://m.youtube.com/watch?v=R1l7sVMTV7o

I know that AIP does not allow nut but in the keystone book low starch diet level 3 they allow a minimal amount of nuts daily, had you tried to include some nuts in the diet, thinking it could be a good source of calories.

The enbrel approval is still on process but I think I should get it over the next weeks.

Thanks Alex

Hi Alex

Nuts are OK also on the extended Paleo (after initial AIP) although it is initially excluded as part of the elimination phase. Some people have sensitivities to certain nuts. I found out peanuts cause my psoriasis to flare.
If you are excluding most starches while on the AIP, maybe it would not hurt to try a nut type or two for energy supplementation, like walnuts, which is supposed to be anti inflammatory.

Something to keep in mind is that, I believe, the no starch approach assumes the Klebsiella bacteria escapes out in the body to generate an antibody response and trigger immune reactions in the first place. The AIP/Paleo is supposed to heal the gut barrier (tight junctions) to prevent that escape of microbes into the body from occurring at all (which may cause additional health effects other than just AS). Although that is just a theory from my side, safest is to exclude most starch as well since it is proven starch does feed Klebsiella. Just make sure to get enough dietary fiber through other foods like avocado, vegetables, nuts/dark chocolate etc.

Some motion x rays could help review if there is any joint instabilities. Although would be best after a few years on biologics perhaps.

I feel you regarding neck stiffness. That took a long time to improve for me with gradual small steps week after week month after month. Exercise and biologics also important to reduce stiffness.
For us stiffness may not completely go away but can improved to have less impact on daily activities.

Also be kind to yourself, set realistic goals and have a lot of patience. Just as the pandemic, we may not ever get back to normal, but we can do what we can to live with a new normal. It may be 30 or 45 or 60 degree of cervical rotation instead of the 80 or 90 we once had.

Take care
PsSpa

Hi PsSpa

I received the approval for Enbrel I am going to start next Friday so let’s see how it goes.
Went to a new PCP today and he ordered allergies test because he saw some inflammation when was checking my mouth, the tests were for food and environmental allergies, the environmental test was only moderate positive to mold and for the food allergies I have to wait the blood work results, don’t know if this will help but at least is something to rule out.
About the goals I understand and I don’t set and specific goal I have been many years with minimal ROM and minimal pain but lately the pain is the main problem so I realized I need to increase the ROM to decrease the pain and spasm, need to free the neck so I don’t stay in a bad posture most of the day.

About the diet I am going to keep a couple of weeks more with salmon/chicken/beef, lettuce/spinach and strawberry/blueberries coconut milk smoothies after that I am going to start including other foods.

Will report the progress with Enbrel

Thank Alex

Hi Alex

Great news that you were approved for Enbrel! Hopefully that will help bring additional relief. Let us know how it goes. It usually takes up to 3 months before the medicine really built up in the body. I have been on Humira for 2.5 years and had very few side effects. Some unexplained scarring on my back a few times (unless I unknowingly scratched against something) but other than that basically nothing. Humira + diet brings down my CRP to lowest detectable level and ESR to 4 mm/h. My inflammation markers came down after about a month on Humira but the joint improvements have taken a lot longer than that.

Sometimes when I eat foods that trigger an inflammatory response (by my mistake or lack of alternatives) then I feel the Humira wearing off earlier and I end up longing for the injection in my second week. That happens for example when I eat certain grains and processed products, and definetely gluten, which I try to avoid at all costs. Gluten triggers my inflammation markers to jump up way above normal even if I take Humira. I know this because I made myself take a celiac test during these 2.5 years on Humira (you have to eat gluten for that test...) and another time when I got gluten by my mistake over the holidays, which were the only times my inflammation markers were not normal. With exception of ESR being a bit high around 15 mm/h when I got too little exercise early in the pandemic and did not supplement with omega 3.

I have been curious to test fasting sometime just to see how it compares to Paleo/AIP but due to job, travelling, family, etc. I never really to get a point when there is a good time to test that.

Take care,
PsSpa

PS Here is an AIP recipe that I made last week. For meat I used ground turkey

Raw fried artichoke
6 servings

16-20 Jerusalem artichoke hearts
Extra Virgin Olive Oil (cook on low heat)
2 pinches sea salt
2 cups grated cabbage
1 small leek
2 yellow onions
2 tablespoons apple cider vinegar
200 gr fresh spinach
400 g cooked meat (eg ham, minced meat, or chicken)
1 bunch finely chopped parsley

1. Rinse and divide the Jerusalem artichokes into smaller wedges. Keep the peel (there is a lot of fiber and nutrition). Saute them in oil on medium-low heat for about 10 minutes or until they have softened slightly. Salt and set aside.

2. Sautee the meat and set aside.

3. Grate the cabbage and shred the leeks. Finely chop the onion. Sautee cabbage, leeks, and onions in oil. Pour over the vinegar and let it steam off.

4. Put the Jerusalem artichokes back in and add the spinach.

5. Add the meat and sautee everything. Taste and salt a little more if necessary. Sprinkle with parsley.
Possibly it can be good with a little squeezed lime juice also for the sake of freshness.
Also if you don't like sour flavor, you can exclude the vinegar or balance it with a little bit of honey.

6. Serve with pickled beets or pickles.