hi Linnea!
have you had a colonoscopy done yet? if not, make sure you have one that goes all the way up into your illeum. intestinal issues can cause some of the problems you describe.
i have both gastritis (which causes pain just under the sternum and gas and nausea) and when that's bad, then i also have IBS (diarrhea). when the gastritis is under control, i go through bouts of constipation with mucus in the stool. and this summer i had that colonoscopy that showed inflammation and a few small ulcers in the illeum. then i had a CT enterography to rule out crohns, so its basically IBS and that inflammation and ulcers in the illeum is a classic diagnostic tool for the spondys if its not from nsaids (nsaids will cause it too, but before i started trialing nsaids, so for me, its my body doing it).
so would hope your GI doc would do more than the US's and CT, would hope for an upper endoscopy (maybe) and a colonoscopy (definitely).
also my GI doc did a gastric emptying exam as the stomach not emptying properly can cause similar symptoms, i was fine in that regard.
and i was tested in multiple ways for celiac (HLA DQ genes, IgA antibodies, and scoped when the upper endoscopy was done). i was fine in this regard as well. though i've read recently that people can still have issues with gluten even if they test negative for celiac. celiac is something easy to test and for anyone having both arthritis and GI issues, something that should be evaluated, IMO.
i have undiff spondy. RF neg. ESR and CRP always between 5-10, as you described, high normal. my white count is always "high normal" or just above normal as well, could be allergies causing that as well as autoimmune though, hard to say. but always my doctors comment on it.
one way to know for sure if the pain in your sacrum is from your SI joint is if cortisone injections into the SI joint make the pain go away. when i've had it done, not only do the SI joints feel better, but the butt stops spasming as well. now i wear a flector topical nsaid patch over the area and change it like clockwork.
yeh, i'm not exactly sure how vitamin D deficiency and osteopenia play into it, but i have those as well. currently taking the prescription strength D to build it up!
have you had any eye issues? uveitis / iritis is fairly common for people with AS, not so much so for undiff spondy. but if you've had it, a good diagnostic tool. i haven't. which i am thankful for. but if you've had it, its an important symptom to mention to doctors.
do your GI symptoms and arthritis symptoms flare together? i think that's another clue. once things got better enough for me that i could notice flares, i noticed the connection between the two; mine definitely flare together.
well, just some things i thought of.
for me, my main problem is enthesitis, inflammation at the enthesis, where the tendons and ligaments attach to the bones. at its least, i have lots of tendonitises, at its worst, i have torn a number of tendons and ligaments over the last dozen years; some bad enough for that body part to be out of commission for 6-12 months (in one case about 2 or 3 years). thankfully never a rupture though! my current rheumy said (and has written) that enthesitis is the hallmark of the spondyloarthropathies. he said the reason i've torn so many tendons and ligaments over the years and had so much tendonitis is because i have a particularly bad case of it, which not everyone does.
and of course the spine, back, SI issues as well, but a chiro is doing soft tissue work with me and really helping that out. this past weekend i did a particularly large load of dishes and noticed that for the first time in years that i could do them without my mid upper back fatiguing and hurting to the point of having to lay on the floor for relief. progress!
welcome to KA!
