I was asked on one of the forums to discuss our experiences with the Low Oxalate Diet (LOD) - and thought I would post them here as well. I have to start with a disclaimer that we don’t fully follow the low oxalate diet… When we were last at our DAN Dr. (Dr. Bradstreet in FL), he recommended cutting back on our oxalate consumption - challenging us to cut our intake in half. His common sense advise was to cut out all nuts and to avoid eating LOTS of the high oxalate foods. It’s actually been a fairly difficult thing to do - especially since my daughter has ~40 other food allergies that all seem to be low-oxalate foods!

We cut out nuts 100% (so no more yummy almond meal in our Ozma Mix), stopped using lemon and orange peal in our cooking (supposedly they are super high), and started cutting back on potatoes and parsley. The hardest thing has been trying to cut back on carrots and celery, which we put in the kid’s lunches and in soups, salads ans just about everything.

It’s been hard to tell how much of a difference keeping or breaking the LOD makes. I know when I go off it (ie: I eat a whole bag of potato chips in one sitting) I seem to be a bit more ‘foggy’ the next day - but it’s a more subtle reaction than when we have a GFCF breech.

The list I’ve been using to gauge how high or low different foods are is online at: http://patienteducation.upmc.com/Pdf/LowOxalateDiet.pdf

As we were refreshing our budget for this year, I tallied up our monthly supplement costs, so I could try and work it in. Here’s what we are currently giving her:

Now, that is a good chunk of change for us - over the holidays, we were watching TV at a relatives (we don’t watch much at home) and I saw an advertisement for a BMW with the same monthly payment…. so we now have the new joke that Dorthy is our “Beemer”. We’ve tried trials phasing some of these out, but they all seem to be be important - we’ll get regression without all of them working together. The good thing is, is that we know a lot of what we can do to help Dorthy, and we’re making progress every day.

The kind of sad thing is that she used to be on 5 different prescription medicines (asthma meds, paxil, etc.) that we have been able to wean her from through better diet (at significant cost also) and the supplements. The new end cost is lower than the prescription only regimen (at least before insurance), but the burden has gone from our insurance company to our pocket. We have made some progress - we are paying for most of our supplements on our medical “cafeteria plan” - meaning that we don’t pay federal taxes on them, but it would be nice if insurance covered more.