I am a VHL warrior. Ok, so I am not really the Boudica of the VHL group: I have been lucky to have been able to lead a fairly normal life despite VHL. However, lately, some chickens have been coming home to roost that are creating havoc in my life: I have developed kidney stones (blood poisoning) on top of Celiac’s disease that was brought on by surgery from a pancreatic tumour. Now that I am gluten-free/low-oxalate, I am nearly impossible to feed.
Don’t get me wrong: I have recreated my diet a few times. Early on, my mother gave me “More with Less”, a philosophical approach to eating lower on the food chain. I grew up with that as a model; not a lot of meat, lots of legumes and rice, very little packaged food. Despite this foundation, I did a complete 180 diet-wise when I was diagnosed with Celiac’s, although I realize now that I was probably not as conscientious as I should have been. Despite deciding not to replace all of those baked goods with their gluten-free counterparts, it’s still very hard not to think that the smell of bread baking means “your mother loves you”. Not that long ago, I reinvented yet again food practices at our home with juicing when I finally decided to find out how the Jack LaLanne processor that my husband bought (me!) for Christmas worked.
Now with beans off the list, the choice of rice whittled down to only the whitest, the only food that I consistently grow on my property being verboten (rhubarb), and a firm no-no to those lovely greens, I sadly flip through recipe after recipe trying to generalize the tiny bit of knowledge that I currently have about what I can safely feed myself, and realize, I have no idea.
It did occur to me that if I were to better treat the Celiac’s condition, my predisposition to kidney stones could be mitigated. To that end, I have become much more vigilant. I have additionally added lemon water to my regime, although I was wondering if I should be drinking it through a straw because of possible damage to teeth. On the up side, I did read that low oxalate diet does help with all of those nasty auto-immune symptoms I was having (rashes, swollen joints, chills, fevers).
The good news is that this aspect of VHL was not terminal…. the bad news is that its treatment involves chronic life-long repercussions….
Do you subscribe to the theory that your body craves what it needs? I have never been a fan of this notion, having experienced so profoundly the effects of a zombie microbiome that apparently lives in my gut and craves sugar all day long. Yes, I chalk up my life-long high-fructose corn syrup addiction to jujubes on bad, bad gut fauna. Oh, yes, that and the fact that the only thing not contraband on any of my lists being sugar.
So when I had a recent long-standing fling with antibiotics, I did think that maybe I should more seriously entertain the idea of fertilizing the mutualistic friends in my digestive track with something into which they could sink their little jaws. Do I choose pre or pro biotic? I was pretty disappointed to read the list of foods rich in prebiotic fibre, because many were already contra-indicated for gluten-free/ low-oxalate diets, although I am still hopeful to find organically grown chicory root and develop a taste for it raw.
The probiotic section yielded a weird and wonderful list of fermented foods, few of which I eat except for sauerkraut (and I doubted that the highly processed and salted stuff I was eating would pass muster). Where was the fermented drink of choice that I know…. alcohol? Just as I was despairing that I will never again like the taste of anything that I am supposed eat, choosing from the margins of food lists as I am, I stumbled on this rich delicious concoction that said to me “this tastes so good it can’t be good for you!” Wow kefir, where have you been all my life? First thing in the morning, as an addition to my pea-protein smoothie, you rock! As a bed-time sleep-inducing aid (not scientifically proven despite the tryptophan) I’m yawning just thinking about drinking you kefir!
One more wild and wooly thought…. apparently there is a bacteria oxalobacter formigenes that actually helps prevent kidney stones from forming by metabolizing oxalate in the intestinal tract. Fun fact; not everybody has this bacteria, maybe I accidentally killed mine in one of my previous antibacterial sieges? It is available in Canada, but not for human consumption. Note to future me: check this out…. up, up and away…..!