I have NMO. Now what am I supposed to eat?

If you’re like me you probably enjoy the occasional over-indulgence of food and usually the bad stuff. Growing up Dutch-Indonesian our meals often revolved around rice dishes, cooking oils and spices. I’ll admit that food, especially the quality of food, is usually the last thing on my mind. I’m not a poor eater but I am guilty of sporadic meal times, missing meals and binge eating. Having a child corrects some of my poor habits but as long as she’s eaten well and regularly I’m ok.

Since my NMO diagnosis several years ago I’ve really battled with food. Prednisone made me over-eat and the weight gain pulled me into a dark depression. I lost most of the weight only to pack it all back on when I was pregnant and then lose it all again. Over time I’ve read a lot of studies, testimonials and books on how diet can resist or improve neurological symptoms.

But I was overwhelmed.

It seemed like the more I read the more confused I became. Some argue a vegan diet while others argue gluten-free or soy-free. Scared of falling into a trap of another fad diet, I spoke with my doctors who all said the same thing – “everything in moderation.” A couple of summers ago I challenged myself to go vegetarian for 2 months, really just to force myself how to cook differently. What I found was that my body felt better, cleaner and more capable of handling the NMO symptoms. But I love steak too much…

So here we are at present. After more research and coaching from family members who also struggle with disease I’ve now spent the last month on the Paleo autoimmune protocol (AIP) diet. It’s restrictive, tough and unforgiving. The goal is to rid your body of all possible inflammatory foods then slowly introduce them back into your diet one at a time to identify which ones cause havoc on your body. My cousin best describes the feeling of Paleo AIP – “it is so powerful to use food and find control again of your body after so long”. Now, I’m not saying that I will ever be able to stop my regular meds and that my symptoms all magically went away BUT after the first week I already felt better.

I’ve just started introducing rice into my diet and so far there is a limit before I feel bloated and sick. I’m playing around with portions and I’m hoping that will make rice more tolerable. I don’t know if full on Paleo is my solution or even feasible but I know I’ve made a huge mindset change that will stay with me forever.

My gallery of Pinterest fails:

This is supposed to be the meat patties that provide my protein in the morning. They never turn out looking like perfect circle hamburger patties.




Instead they turned out looking like burnt hockey pucks (but they still tasted really good).


Desperate for sugar (I went into complete withdrawal after 2 days) I attempted to make beautiful coconut flour pancakes. They tasted horrible, like dry flour and no amount of maple syrup was making these better.


This wasn’t a fail per se but I did miss potatoes. My family really enjoyed this roast.







  1. Bunmi Scott

    Thanks for writing this post. I’ve been disagnosed for a number of years now and toyed with foods suitable for me.

    This post means I can stop searching so thank you. 🙂

    Comment by Bunmi Scott on May 26, 2015 at 2:50 pm

  2. Stacey

    If you need a sweet morning meal, I make pancakes with cottage cheese. There are a ton of recipes out there, you don’t need a lot of “flour” with them. I either use an almond/coconut flour mix or just blend up some steel cut oats into a powder.

    Comment by Stacey on May 26, 2015 at 3:26 pm

  3. Jenna

    Thanks for the tip Stacey!

    Comment by Jenna on June 11, 2015 at 2:40 pm

  4. jd

    Thanks for sharing your food story! I’ve been eating (mostly) autoimmune paleo for the last few years, too. I eat those same tasty hockey pucks, and I am convinced there’s really no way to make decent pancakes with coconut flour! But it does seems to help me feel better….

    Comment by jd on June 1, 2015 at 7:49 am

  5. Jenna

    Stacey shared an idea with cottage cheese if diary is something you can consume. I’m limited in my diary so unfortunately that won’t work for me, thus back to the gluten free raisin bread and meat hockey pucks.

    Comment by Jenna on June 11, 2015 at 3:11 pm

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