Ankylosing Spondylitis - Anybody have insight?

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Has anyone here had it or knew somebody who did

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Unfortunately, AS is a chronic condition and not something you will be cured of; however, it can be managed.
I have it. You can ask me anything.

My experience with rheumatologists is that they will diagnose and prescribe drugs and that's about it. I do not even broach the subject about diets anymore as they usually are dismissive about the link between gut health and autoimmune disease. They are helpful in that blood work will be drawn each visit and it is important to monitor your c reactive protein level and sed rate to see how active your inflammation may be. If you can i highly recommend trying to get an appointment with the Mayo Clinic. They will spend a lot of time with you and also test you for common companions of AS: Crohn's, Colitis, Celiac. Do you gut issues as well?

In regards to gut, you are on the right track by trying anti-inflammatory dieting. I don't know the specifics of what you eat, but I made a lot of hard changes and have benefited greatly. You've got to get your gut healthy. Keep in mind, NSAIDs you may be taking for pain will keep your stomach torn up and the cycle of flare ups active. I wouldn't sweat that too much now though if you are in a bad way and need pain relief.

I'm not crazy about taking biologics, but yes thy have helped me a lot. I'm on Enbrel. Humira will probably what your rheumy will try first. Try to keep excercising. Fight through the pain. Trust me, you do not want to get fused.

Find a good functional medicine doc ASAP

Dairy is pro inflammatory along with simple and complex carbs. IGF1 is the most abundant pro inflammatory compound in the human body and it is greatly increased in high carb diets.

Here is my somewhat brief story and experience with this. I was diagnosed in November 2018 with this after suffering from really bad back pain that would originate in the middle of the night and subside about an hour or two after waking, every single day since March of that year. I started seeing docs in May that year (PCP 3 times, spine doctor, chiropractor, physical therapist). No one could diagnose the issue, or why some other issues were popping up (random joint pain, neck pain, plantar fasciitis, achilles pain). However, my physical therapist did state my SI joint was the source of some of my pain that was going up to my thoracic spine. I googled this and came across AS so I made a rheumy appointment who quickly was able to diagnose me after an SI joint MRI and positive HLA-B27 gene.

Here is some of the fallout:

CRP and Sedimentation lab tests are normal so he suspects my case is mild, however I am monitored every 6 months with these tests. X-rays from my SI joint to my neck show no fusing. I have tried natural methods such as the autoimmune paleo diet, turmeric supplements, etc. None of this helped. I've been prescribed Celebrex 200mg daily which has greatly improved how I feel. Stress seems to be my biggest flare up trigger. While I know taking an NSAID every day isn't good, I don't really know what else to do because the way I felt before was misery. I try to mitigate the side effects by taking it after a meal followed by lots of water.

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kefir milk
Did some research on this ,the galactose and lactose responsible for inflammation is used up in the fermentation process.Kefir is very high in probiotics which might possibly negate the inflammatory effect of casein.Not sure of this,just speculating.Might be worth a trial.
Kefir sounds pretty nasty tasting but if it would help I guess one could hold their nose and choke it down.

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Some speculate that A1 Casein is inflammatory so this can be avoided by using A2 milk.