My Low Oxalate Story

Let me share my experience with you, the method behind the madness that is the low oxalate diet. Oxalates are salts found in plants. They are in trace amounts in many things, such as milk and meat (which makes sense, as the cows that produce milk eat plants). They are in large amounts in certain other things, especially spinach, some legumes and many kinds of nuts, and, sigh, dark chocolate/cocoa products.

In my early 30s, things started to get very painful, the kind of pain you need to see an OB-GYN for. My OB-GYN told me I had lichen sclerosus. Lichen sclerosus is an autoimmune disease. He prescribed steroid cream. The steroid cream would work, and then give me a yeast infection. I felt as if I was trapped.

One day, I got fed up and went to another OB-GYN. She reviewed my huge file—many visits for itching and burning, and yellow discharge. She informed me that my other OB-GYN had misdiagnosed me and that I actually had lichen simplex, something he’d neglected to mention. Lichen simplex is eczema caused by repeated scratching; basically, it’s skin irritation, and not necessarily an autoimmune disease.

I was very angry. When I’d googled “lichen sclerosus,” I had first heard the word “oxalate,” and “low oxalate diet.” I glumly (and incorrectly) figured since I had an autoimmune disease, it wouldn’t help. I was especially angry at how the new doctor dismissed my symptoms, stating bluntly that the yellow discharge was simply mucus tinged with urine.

Then why on earth did the steroid cream make it go away temporarily? In my ever more frantic searching, lichen simplex and low oxalate diet kept coming up in the searches. I decided to give it a shot.

Imagine my surprise to discover virtually everything I was eating was high in oxalate. Oxalate is especially concentrated in spinach, almonds, and black beans. At the time, I was a strict vegetarian, and had been for over a decade. I learned about the three food categories of oxalate—low, medium, and high. I was mostly living off of frozen commercial veggie burgers. I was eating almonds by the fistful for the extra nutrients and protein. I was drowning myself in oxalates every day without even realizing it.

I immediately started by cutting out the spinach. I accidentally backslid by ordering a sandwich with spinach, and sure enough, four hours later, there was burning and itching.

I started off by discovering the Vulvar Pain Foundation, abbreviated as the VP Foundation. I devoured nearly every word on the Trying Low Oxalates message board. I read everything I could on Heidi’s excellent site, lowoxalateinfo.com. I experienced something really weird—brace yourself for TMI. The message boards had promised that things would get worse before they got better. I was achy, irritable, and, one day, I found something very strange when I went to the bathroom. I had passed tiny, black crystals in my urine. Supposedly, this sort of thing was a sign of oxalates leaving your body, something that mostly happened in stool.

I kept cutting out the big ticket items, first spinach, then almonds, then most beans. Even though I could have easily gotten my protein from a serving of tofu (medium oxalate) I was so fed up with soy I mostly cut that out, too. I began eating meat again.

I started using the steroid cream less and less. The itching and burning intensifies when I backslide, but overall, my symptoms are much better. I am vigilant about what “mixed greens” means in a restaurant so I can avoid spinach. I switched my daily sandwich to a daily salad, and the only cereal that comes in the house now is Rice Chex. I am learning to make ice cream with coconut milk, and trying to cut back on flour, hence all the recipes you’ll find on the site with coconut flour.

Aside from the low oxalate housekeeping, this experience has given me something valuable. I still have pain, but I have reduced my suffering. Sometimes, even when I eat just right, I still have pain. When I was first diagnosed, I felt broken. It felt unfair, wrong. Why couldn’t I eat what I wanted? What did I have to eat or not eat to be totally pain free?

Now, I feel that I can think through the pain. The pain just is. I still have flashes of self-pity—I’m only human. But being able to breathe through the hurt is much better than angrily sitting with it, frantically googling, convinced I could find a magic elixir.

I’m still experimenting, still tweaking things about my diet all the time. I joke with friends that it’s like a religion. I want to spread the word! Eat what makes you feel good, before and after. It’s slowly working for me. My body and mind are still healing, but it feels good to have a sense of how far I’ve come.

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