Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Help - not sure if I really have AS

I could write pages so I'll try to keep it as short as possible.

I've been dx'ed with undifferentiated spondyloarthropathy because

I have gastritis (detected by endoscopy, obvious due to the pain),

inflammation and crohn's like ulcers in my ileum (have a colonoscopy if you haven't already),

a lower case of psoriasis,

a very bad case of enthesitis (i was tearing tendons and ligaments along with all the tendonitises and "pulled" muscles or tendons - LDN helped that a lot, but that's the main thing LDN did for me, but that was huge to stop tearing tendons and ligaments, some serious enough to take a year or more to be able to use again),

SI joint inflammation (that's a big one! a flector patch over my SI joint daily, changed twice a day helps a lot)

neck problems (oh boy that's a book in itself)

flares (that's typical of autoimmune / autoinflammatory diseases)


I've had chronic constipation on and off since I was before I started school, lots of prune juice, learned to manage it in my teens and 20s. Then the gastritis and diarrhea with undigested food and weight loss at age 29-30, finally started getting it under control after a few years. Then the arthritis started at age 35. Then the GI stuff came back moreso and then had both arthritis and GI stuff to contend with. 5 rheumatologists and 12 years to get diagnosed and treated for the arthritis. Was always fortunate to have outstanding GI docs so was managing those symptoms. It was actually my GI doc who was trying to get me a dx of crohns as he knew about the arthritis and knew the two went together; not sure he knew one could have the GI inflammation but not IBD and have the arthritis, but his dx of inflammation of the ileum was a major piece in getting me a dx.

I finally flew down to philadelphia to see dr lawrence brent to get dx'ed. I had read his papers on AS vs undiff spondy and felt he was the expert on the latter and if anyone could tell me yay or nay it would be him. Within the first few minutes of our visit, he told me that clearly I had a spondyloarthropathy. Then we spent the next hour trying to determine which one. That's when we came up with undiff spondy, as I have all those overlapping symptoms.

Before him, not one of those other 4 rheumies asked me a thing about my GI symptoms. I didn't know to tell them back then. I can't believe how they couldn't ask me about that. Though once I knew what I had and told one about my GI symptoms, he still couldn't connect the dots.

I'm HLA B27 negative. My CRP and ESR were always within normal. Though my high sensitivity CRP came up 3 times above normal just recently and I'm on Humira and had just been on prednisone, so maybe that's a better test, or maybe it shows I'm flaring. My GP was concerned about all that inflammation.

You asked about diet. I'm allergic / sensitive to not gluten, but rather dairy. Staying away from dairy has helped. It has helped my gastritis and constipation the most. Maybe it just takes time to heal a leaky gut.

Steroids have helped me. Humira is helping me. A lot for both.
Aleve helps, but due to the gastritis and edema it gives me, its only for a few days.

I don't get uveitis but I do get dry eyes when I flare.

I also can get a bad itchy rash on my legs and tops of my feet when I flare bad that isn't psoriasis but rather "generic typical autoimmune response" as my rheumy states it.

I think its a shame that so many rheumies don't ask about GI inflammation and most don't recognize it unless its IBD. I think its a shame that so many rheumies don't understand flaring.

OK been interrupted a few times writing this now, so while it started off on track, now I can't remember what I have and haven't said, so I'll end here.

Mostly sharing to show, "Yeh, sounds real familiar"

Don't give up though, just keep searching for a rheumy and GI doc that get it.