There is a low starch diet that is paleo with reduced or eliminated starch for people with ankylosing spondylitis, or any of the spondyloarthropathies. It was developed by Dr. Ebringer in London so it was at first known as the London Low Starch Diet. You can find out more information about it at a support group called Kickas dot org. I have axial spondyloarthritis and I do much better not simply gluten free, but low starch (grain free, legume free, and reduced starchy veggies and fruit). Best wishes!
12 year old diagnosed celiac daughter has "fallen off" the weight curve. She eats but very small quantities. (Please don't suggest high calorie shakes..foods etc ... already doing all of that). So far we've had negative results on gastric emptying, endoscopy, colonoscopy, etc. Going to do Small Bacterial Overgrowth test, impedance test, redo gastric emptying (doc feels previous hospital did it incorrectly). Gastro is very worried about her growth. She has not gained any weight this year. Extremely slow weight gain previous years. Celiac is controlled. Tried EVERYTHING with diet. Really wants to do an naso gastric feeding tube to give highly caloric/nutritious liquid feeding directly to her stomach. Has anyone had experience with this? Good? Bad? Please respond only if you or someone you know has actually done this. Thank you!
Already had that looking on experience and in the end had to leave the room as it was unbearable just sitting there with people laughing at me not being able to eat, yup people are cruel and really show their colours at times like this.
Tbh based on the reactions I've had from people my age so far the kissing thing will be irrelevant as no one will stick around to get that far. Since the diagnosis whenever the gluten stuff has come up I've been belittled and made the butt of jokes. Then even people who previously were OK with it started jumping on the bandwagon too. Seems like the alternative to the "bad ones" is no one, which is even worse
@GFinDC it's the time thing that's really getting me down right now. Feel like I've lost out so much already and the thought of losing another year or two to this is driving me crazy, especially when I see others my age making the most of their lives and I know with this I can't do the same.
I'm exactly one of those people you described, never been interested in cooking and vegetarian too which rules out this paleo diet everyone seems to use as gut healing. Just adds to the feeling of being lost in all this and once I close the forum window I'm on my own.
Still wondering if to do those Cyrex tests to find out early on which other foods may be problematic. Part of me isn't convinced they're scientifically proven enough to be useful but then others seem to have had useful result. Trouble is it's not cheap and already been drained money-wise by these private hospital visits so have to pick the treatments wisely...