Anti-Oxalate Diet

[Jalika]

Hi. I was wondering if anyone had experience with an anti-oxalate diet. I am symptomatic again after a few years of having done fairly well. This is because my insurance company changed its formulary recently and will no longer pay for brand-name Lyrica. I seem to do better on the brand-name formulation than various generics. While that gets sorted out (hoping it does get sorted out), I thought I’d try the anti-oxalate diet. I remember getting much worse when I upped my oxalate intake. Perhaps seriously reducing it will help? Thoughts?

[Sherritt]

Hi Jalika. I have to say that I have had great results with lyrica. The generics did not work for me. Had to have my doctor write a letter to the insurance company to get it approved. Still expensive but worth it.
Good luck.

[Lgomes]

I’ve been on a carnivore diet since the beginning of December. I fell off the wagon a few times but I have recently started to feel better along with taking gabapentine. Lyrica did not work for me. It’s hard to say if it’s the diet or the meds but I’m continuing both as this is the best I have felt in a year

[OnFireInSeattle]

I would like to know more about this diet. Desperate to try anything.

[Jalika]

Me too. I found a single set of posts buried in a thread I can’t seem to find again. But the person who tried it had very good results. I’ll try to dig up the thread.

[CarterDK]

Just a reminder, you should have monitoring by a physician when engaging in diet plans that cut out more than just excess calories and refined sugars. Eliminating nutritious foods requires careful planning to ensure you’re still getting necessary nutrients in adequate amounts.

[CarterDK]

You’re probably thinking of @Cindy2, who discusses a low oxalate diet in the following comments (in descending chronological order):

Has anyone read the book of Carine Prevot about 'fixing her EM'?

I don’t know what worked for her, but a low oxalate diet is working miracles for me. And I might be naive, but I would never hold back helpful info abpit EM and try to profit from it. It’s like refusing to let someone in your lifeboat when there’s plenty of room and supplies… If you want info about what worked for me, there is a yahoo support group called TLO (Try Low Oxalate) that has tons of helpful information. If you decide to try it, start gradually. I don’t know how many people it cou…

Who diagnosed you and what meds are actually working for you?

To answer your question, I was officially diagnosed by an excellent podiatrist named Dr. Kelly Stagg in northern Utah. This is after asking every doctor and specialist I came across for 7 or 8 years if they had heard of EM. It was the only thing that fit my awful symptoms. No one had heard of it and one of them was frankly a big jerk about it and acted like I was a total moron to think I could possibly have a rare disease. I never thought to go to a podiatrist because I was so sick overall. …

Diet changes and how it affects flares

Now I am trying a low oxalate diet, my urologist put me on it. I wish I had done it gradually, but the doctor didn’t tell me that. Apparently, if you do this suddenly, then the body decides it is a great time to get rid of the oxalate it has been putting into your cells as a way of dealing with high oxalate levels. And so then you get a whole lot of oxalate (the stuff that left your cells) now running around in your bloodstream. And you get sick. This process starts a few days or a week a…

Amyloidosis and EM

Update - the nephrologist does not think I have amyloidosis, at least of the kidneys. It is a big relief. He will keep monitoring me for the next several years, however. They put me on a low oxalate and a low protein diet. I wish they had warned me to do the low oxalate thing gradually, but that’s a whole different support group. And the low oxalate is really affecting my EM. Once I am through the uncomfortable process of adjusting to it, I will write more. I have hope that it might get…

[Jalika]

Thanks for digging that out of the various threads. Her posts struck me because a few years ago I tried one of those high protein diets (with shipped food) to lose some weight and flared perhaps worse than ever. Turns out it the food was all soy oxalate. I did talk to my doctor about starting the diet and she said it was fine. For now it is just about swapping spinach for kale, raspberries for apples, etc. Start slow and see what happens. I’m also upping my exercise and trying to meditate more.

[CarterDK]

@Jalika

I did talk to my doctor about starting the diet and she said it was fine.

Very good. What would be the mechanism by which a low oxalate diet would reduce flaring from erythromelalgia? For instance, capsaicin (the “spicy” component in chili peppers) causes neurogenic vasodilation in the skin and is a logical agonist for EM flaring. I’ve experienced that myself after eating spicy foods. Is there a theory for why oxalate would affect EM symptoms?

[Jalika]

I am afraid it was really something I dropped in passing. I wish I knew more about the mechanisms by which lowering oxalate levels are could effect EM. I just have two anecdotes (Cindy’s posts and my experience with increasing oxalate) and as I hear repeatedly from colleagues in the sciences — anecdotes aren’t data. I started the thread in the hope that others might know more.