I didn't start with the arthritis part of my spondyloarthropathy until I was 35, but the GI part flared very badly (severe gastritis, wasn't digesting my food (inflammation in my small intestine) when I was 30 and I had GI issues (mostly constipation since before I started school). I had a great gastroenterologist long before I found my rheumy, and his dx of inflammation in my gut helped in my finally getting a diagnosis. That and my dermatologist telling me that my "dry skin" was in fact psoriasis. I also have dry eyes, but not uveitis.

It took me 12 years for a diagnosis, but finally I'm on Humira and that made all the difference. I finally got my life back.

Because: 1) it took so long to find a rheumy who could and would diagnose and treat me, and 2) my current rheumy believes in holistic (trying everything that makes sense), I also do a lot of other things...I tried even more, but kept the things that seemed to help.

I tried the no starch diet, but that didn't seem to be what my gut needed. Yeh, maybe I didn't try it right, but I saw no effect when I did try it. I did see a naturopath, and had IgA / IgG food sensitivity testing. I'm not sensitive to gluten (also had an upper small intestine biopsy and HLA-DQ2/DQ8 come back negative), but Casein was off the charts and egg was mild. So I'm cow dairy free, and only eat a little goat or sheep cheese; mostly I eat coconut milk products like coconut milk yogurt in place of dairy milk products. My rheumy also had me get the same IgA/IgG work done for S. cerevisiae (the yeast used in beer and bread making, Bakers yeast) and I'm also sensitive to that. I already wasn't eating much starchy food including bread and I hate beer, so it was easy to be yeast free in my diet.

Thus, I do think diet and thus a leaking gut from years of food sensitivity is what led to my arthritis (inflamed joints) and other systemic symptoms. Just for me it seems to be dairy proteins (casein and maybe others such as whey, I stay away from all of them, I read labels...sodium caseinate is just another form of casein for example...and if I want a protein bar, it has to be soy protein or pea protein as whey is the common pervasive protein used in so many "protein" products), eggs (maybe), and yeast. Even on Humira, I stay on my dairy free, yeast free, eggs in moderation diet.

Getting IgA/IgG food sensitivity blood work done is certainly worth considering. It was for me. Before that, I had kind of figured out the dairy part of it from a food elimination diet, which doesn't surprise me since casein is my worst enemy.

I also do a number of supplements; started with the naturopath and an endocrinologist, and added to by the rheumatologist...I kept the ones that seemed to help / seemed necessary.

And a number of more mechanical treatments, like ice, PT over the years, etc...whatever works...I still use most of these things, even now on Humira. Just that I need them less and/or they actually are effective now and its not a constant losing battle.

Certain symptoms like Uveitis can really help with a diagnosis. Make sure you take the letter from the eye doctor to the rheumatologist as proof.

Also remember since many of us flare, it can take quite some time to determine what helps and what hurts. If we try something and feel better, we may think its what we did, but it may just be between flares. But if it happens over and over again and we see a trend, it becomes more believable. But that's why it can be frustrating trying to figure out things like diet.

Good luck with the rheumatology appointment!


sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)