New year, new health challenges for this autoimmune mama

Being a mom with an autoimmune disorder really has its challenges. Sometimes I just have to say, “this sucks” aloud and angry cry until it stops hurting on the inside. I never thought life would be like this in my 30s. It’s another Saturday that I’m stuck at home in pain instead of enjoying the symphony with my son.

As my urologist suspected, I now live with interstitial cystitis, which is apparently common when you’ve got an autoimmune disorder like Sjogren’s. It explains all of the flares I had in the past year and why none of the antibiotics worked.

Distal renal tubular acidosis, the paleo diet, and kidney stones

Did you know that long-term use of the paleo diet can cause kidney stones? It’s interesting to me because it’s the first diet recommended for those suffering from autoimmune disorders. Going paleo may help with your inflammation in the short-term, but I think it’s important to know that it can have consequences on your health.

With distal renal tubular acidosis in Sjogren’s Syndrome, I already have a propensity to make stones. My nephrologist wants to keep me off meds and my urologist’s goal is to keep me out of surgery. They recommend I change my diet altogether. I started researching low oxalate and low protein anti-inflammatory diets. Not surprisingly, there’s not much information out there and a lot of the research seems to be in conflict.

With my scholarly approach to research, I’m going to share the best of what I’ve found with you today. That said, I think it’s important to take all diet recommendations with a grain of salt (just one grain for all you Sjogren’s patients watching your salt intake).

Resources I’ve found to help manage interstitial cystitis and kidney stones

  • The University of Chicago did a great write up on how to eat a low oxalate diet (based on Harvard’s list). It’s been helpful for knowing which foods to avoid and which ones to combine with calcium when you eat them in moderation.

    I especially like their documentation of 177 high oxalate foods, charts, and the breakdown of information (which foods you should avoid vs which foods you should limit). For example: 1 serving of almonds (only 11 almonds, people) contains 122 mg of oxalate.
  • This is the most extensive food list I’ve seen for managing interstitial cystitis. The table I’ve copied below is only the beginning, folks. Note: lemon is one of the most bothersome foods for the bladder. Lemon is also one of the few foods to actually help with kidney stones. It is hard when you are managing two conditions that can conflict with each other. Again, take it with a grain of salt and find what works for you.

Recipes and nutrition guides for managing interstitial cystitis and kidney stones

  • This is the one helpful Low Oxalate, Anti-Inflammatory cookbook I’ve found. What I appreciate most about her book is the breakdown of low oxalate bread, grains, flours, condiments, spices, and nuts (yes, you can eat nuts on a low oxalate diet!) It’s amazing for meal planning and grocery shopping.
    A fair warning that many of her recipes contain coconut flour, but she does recommend using Bob’s Red Mill 1:1 Gluten-Free Flour — which I happen to already like and use for baking. While I appreciate coconut, I don’t like everything tasting like coconut.
  • The Stopping Kidney Disease Food Guide has lots of recipes and nutritional information. It’s helpful to see alternative ways of preparing recipes I love, like ginger garlic vegetable ramen and Mexican street corn. I also really appreciate his recommendation for non-dairy milk substitutes for kidney patients. When you have to give up the oat milk, it can be hard to find new alternatives that don’t contain added calcium as a supplement.
  • Supplements like Prerelief and Javacid to reduce the amount of acid in my coffee (low oxalate, y’all), tomato basil soup, and other foods I like to enjoy in moderation.
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