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Ankylosing & B27 Alliance

46 members • Free

1 contribution to Ankylosing & B27 Alliance
Read This First 👇 Why This Community Exists
If you’ve ever been told: - “It can’t be Ankylosing Spondylitis — there’s no spinal damage yet.” - "You are too young." - “Your pain can’t be that bad.” - “Let’s wait and see.” …welcome. You’re in the right place. I built this community out of frustration. Ten-minute medical appointments. Endless gaslighting. Real pain brushed off because imaging didn’t look dramatic enough. Meanwhile, I was dealing with constant flares — nerve pain shooting through my arms and legs, eye pain, groin pain, gut pain, and deep lower-back inflammation that never fully let up. No one wanted to ask why. So I did. I listened to podcasts. Read Facebook groups. Dug through Reddit. And everywhere I looked, the answer was the same: Biologics. Genetics. There's nothing else you can do. Full stop. But no one could explain why AS symptoms appear in the first place — or why flare-ups felt so tightly linked to what I was eating. Then I heard a random podcast where someone casually mentioned going into remission by cutting starch. That sent me down a rabbit hole: no-starch communities, old medical studies from the 1980s, gut bacteria, immune signaling, HLA-B27, and a whole lot of NEW research and science that exists in the last two years — but rarely gets explained to patients. Most diets I tried failed. Vegetarian and vegan made things worse. “Anti-inflammatory” worked sometimes but not always. Then I committed to no starch, no sugar, London AS-style. Week 3: worst flare of my life. Week 4: symptom-free for the first time in 10 years (and 2 years no flares so far). Not cured. Not perfect. But finally in control. Digging further, I found new research and experiments explaining my experience with validated, peer-reviewed medical journals. Finally, dots were connecting. That’s what this community is about. What This Group Is ✅Understanding how AS works — not just what it’s called ✅Connecting gut, immune system, diet, and flares ✅Science-first discussion (not vibes, not miracles)
0 likes • 10d
Is this group ONLY for those with AS, or also for others with other types of spondyloarthropathy? I am HLAB-27 + and have enteropathic spondyloarthropathy - or arthritis. I have also had uveitis and the "enteropathic" comes from the ulcerative colitis I developed in the same year as first spondyloarthropathy symptoms (PAIN) in hip.
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Mary Lewis
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5points to level up
@mary-lewis-1701
I have enteropathic spondyloarthropathy. I have no axial involvement, but have sacroiliac involvement, hips, shoulders & knees. Correct dx took years.

Active 2d ago
Joined Dec 31, 2025
INTP
Georgia