This is in many ways similar to my own dietary changes made back in 2018.
For any migraine sufferers reading this, the book The Migraine Miracle is a super place to start. Dietary changes simplified - for example, no.1 cut out gluten AND sugar.
Took me months to notice any change to skin, weight, health. And I’d already cut out alcohol and caffeine because I was too ill to drink it.
Reducing inflammation has to be the no.1 priority of those of us living with chronic illness. Diet is huge but there are so many other ways we can reduce inflammation alongside. Eg, the way we speak to ourselves.
For anyone without support be that financial or otherwise, I am someone who didn’t go organic. I didn’t do any of it perfectly. In fact, (miraculously) I put the least amount of pressure on myself to make these type of changes.
In no way am I recommending this as a diet but to give an example of what I ate on the daily:
Porridge oats, with seeds and anti-inflammatory additions like turmeric & cinnamon (even this was regular shop bought milk back then but now I drink raw)
Plate full of raw veg with hummus, cheese, avocado (had this everyday for about 18 months)
Rice dish (often with meat but when I split up
With my boyf my body told me not to buy supermarket meat ever again and I ended up living with a vegetarian for 18 months and it really felt like my body was telling me to detox from meat for a while).
Ladies who menstruate: we need to factor in our menstruation cycle. Alot of information doesn’t factor in our possible need to eat more when around our bleed.
From the off, I allowed myself to “eat what I want, when I want”. The only stipulation was to make it inflammation reducing. So I noticed an increase in the week before my period.
All the info I read said I wouldn’t lose weight this way (didn’t give a shit about weight at that point of illness - my priority as of out of nowhere, became my health).
But the weight did fall off. Massive chunks at a time. With long periods with no weight loss.
People used to ask “what do you eat!?!” But I ate loads of what I could eat and didn’t focus on what I couldn’t.
Food began to taste better. I felt satisfied by what i was eating - for the FIRST time in my life. I put it down to not being super strict that within 12-18 months I realised that this way of eating was sustainable for life. I enjoyed it.
I want readers to know that this is possible. It isn’t about denying, it’s about feeding and fuelling your recovery in a way that work and supports you.
Eventually I became intuitive with my eating. It’s the least recommended option out there but it is possible to tune into your body and what supports you which makes all the conflicting information so much less of an issue (to the point there is no conflict. Your body knows).
So much good stuff here Amber, thx for taking the time to write it! +1 on weight loss too (I wasn't trying to lose weight either, but new weight feels great - this is after putting weight back on because during the illness I lost way too much of it). I like how you call it intuitive eating. And agree re menstrual cycle, I'm noticing changes in my body's needs there now, too, that I was never attuned to prior. So much learning!
Thanks for this post, Nicole. There’s a lot of consistency in what those who have recovered have recommended as far as diet. I went GF and DF for about six months and did not notice any change. I also tried keto, low histamine, no sugar at separate points along the way. I’m working with a nutritionist now and she also helped me see, like you, that I wasn’t getting enough fluids and protein each day. So I’ve made those tweaks. No dramatic changes, but I’m plodding along slowly on my recovery still and have learned to accept that it won’t be a quick process.
Agree, diet changes aren’t a quick fix, and most likely won’t be sufficient by themselves for most people, sadly. But I do think they are very supportive of recovery. Helping the body along in whichever way we can is all we can do.
Awesome that you are working with a nutritionist - I looked into that too at some point and gave up, because I didn’t find anyone near me who seemed to have experience with post viral recovery. Any other learnings that you’ve gotten out of working with yours?
I also think that during the initial stages, the inflammation in my body was so rampant that I wouldn’t have noticed any changes from diet, similar to what you describe (I didn’t notice a change then, either). Now, whenever I eat gluten for example (I do again, but only every so often), I can often notice it the next days (skin changes, less energy). So it’s definitely driving inflammation for me. But back during bedbound days it wasn’t noticeable, because there was SO much more going on. It’s like the house is already on fire, what difference would a candle make :) but I think over time, it helped me to not add more fuel.
I agree with that. I went full gluten again and didn’t love how I felt, so I’m pulling back a lot now.
There’s also so much heterogeneity among us that these dietary changes are 100% worth giving a shot. No one has the one secret sauce yet on LC, and there probably isn’t just one.
Also, have you heard of Lily Spechler? She goes by @longcoviddietitian on IG. She is a dietitian who resolved her own LC. There’s another one whose handle is @nutritionwithconfidence, and she’s spoken about treating dysautonomia through nutrition as well.
She’s not particularly well versed in post viral recovery, but she does have three other long hauler clients and she loves learning and reading studies we send her. So we are learning together, and I’m okay with that. I wish I had known a few years ago that this service is entirely free under my health insurance - not even a co-pay!
At the moment, I am getting ready to start treatment for SIBO under the care of a GI doc, so my nutritionist and I are riding that out first before looking at other tweaks. My GI problems have not been touched in 4.5 years by any dietary changes, which has all three of us thinking some other more serious dysbiosis is going on.
Oh wow that does sound like something is going on beyond diet - what a journey for you of figuring all that out. Hope the new treatment will work 🫶
And I had no idea re insurance coverage!! Too late now for me (I don’t have my insurance anymore), but hopefully someone else will see this who might be able to tap into that resource. Thx for sharing!
I found that when I was eating very strictly for 2 years, I created a very negative stress cycle around eating which I am now trying to heal from. This is why I’m concerned about being too strict especially around no gluten, sugar, and dairy which are very difficult for me never eat. For now I’m trying to be less rigid, but really appreciated reading about what worked for you!
Thanks for sharing Talia! That definitely happened for me to a degree as well, and I think these 2 things are super important to balance. I am planning to share more about that in my next post, part 3. I was actually worried about splitting the post for that exact reason, sharing this rigid approach without the balancing, but it did get much too long. Thanks so much for commenting, and I wish you all the best for your healing ❤️
This is such an informative post Nicole! So similar to a lot of the changes I made when I first got sick - and now have had to change again thanks to raging MCAS. Though I drink 6-8L of water a day 💧 😱
Can’t wait to see you write more on this topic - I’ve shared some dairy swaps in the past and people are really eager for this information. It’s incredible what you can do with real whole foods if you get a bit creative (chia seed pudding, avocado mousse, “cheesy” kale chips anyone)?
Oh wow that quick, that is great to hear. Thanks for sharing. I've been meaning to explore more Ayurveda (and particularly diet), too. Did you manage to keep it up?
I’m trying my best at home but it takes so much physical and mental effort to cook everything from scratch lol so I’d say I’m doing 80%. I’m actually wondering if the treatments that I did (I did a panchakarma retreat) in conjunction with the dietary changes are what made a huge difference for me. Hard to say!
This is in many ways similar to my own dietary changes made back in 2018.
For any migraine sufferers reading this, the book The Migraine Miracle is a super place to start. Dietary changes simplified - for example, no.1 cut out gluten AND sugar.
Took me months to notice any change to skin, weight, health. And I’d already cut out alcohol and caffeine because I was too ill to drink it.
Reducing inflammation has to be the no.1 priority of those of us living with chronic illness. Diet is huge but there are so many other ways we can reduce inflammation alongside. Eg, the way we speak to ourselves.
For anyone without support be that financial or otherwise, I am someone who didn’t go organic. I didn’t do any of it perfectly. In fact, (miraculously) I put the least amount of pressure on myself to make these type of changes.
In no way am I recommending this as a diet but to give an example of what I ate on the daily:
Porridge oats, with seeds and anti-inflammatory additions like turmeric & cinnamon (even this was regular shop bought milk back then but now I drink raw)
Plate full of raw veg with hummus, cheese, avocado (had this everyday for about 18 months)
Rice dish (often with meat but when I split up
With my boyf my body told me not to buy supermarket meat ever again and I ended up living with a vegetarian for 18 months and it really felt like my body was telling me to detox from meat for a while).
Ladies who menstruate: we need to factor in our menstruation cycle. Alot of information doesn’t factor in our possible need to eat more when around our bleed.
From the off, I allowed myself to “eat what I want, when I want”. The only stipulation was to make it inflammation reducing. So I noticed an increase in the week before my period.
All the info I read said I wouldn’t lose weight this way (didn’t give a shit about weight at that point of illness - my priority as of out of nowhere, became my health).
But the weight did fall off. Massive chunks at a time. With long periods with no weight loss.
People used to ask “what do you eat!?!” But I ate loads of what I could eat and didn’t focus on what I couldn’t.
Food began to taste better. I felt satisfied by what i was eating - for the FIRST time in my life. I put it down to not being super strict that within 12-18 months I realised that this way of eating was sustainable for life. I enjoyed it.
I want readers to know that this is possible. It isn’t about denying, it’s about feeding and fuelling your recovery in a way that work and supports you.
Eventually I became intuitive with my eating. It’s the least recommended option out there but it is possible to tune into your body and what supports you which makes all the conflicting information so much less of an issue (to the point there is no conflict. Your body knows).
So much good stuff here Amber, thx for taking the time to write it! +1 on weight loss too (I wasn't trying to lose weight either, but new weight feels great - this is after putting weight back on because during the illness I lost way too much of it). I like how you call it intuitive eating. And agree re menstrual cycle, I'm noticing changes in my body's needs there now, too, that I was never attuned to prior. So much learning!
Nicole, do you have any go-to recipes similar to Amber's that you've leaned on in your new diet?
Thanks for this post, Nicole. There’s a lot of consistency in what those who have recovered have recommended as far as diet. I went GF and DF for about six months and did not notice any change. I also tried keto, low histamine, no sugar at separate points along the way. I’m working with a nutritionist now and she also helped me see, like you, that I wasn’t getting enough fluids and protein each day. So I’ve made those tweaks. No dramatic changes, but I’m plodding along slowly on my recovery still and have learned to accept that it won’t be a quick process.
Agree, diet changes aren’t a quick fix, and most likely won’t be sufficient by themselves for most people, sadly. But I do think they are very supportive of recovery. Helping the body along in whichever way we can is all we can do.
Awesome that you are working with a nutritionist - I looked into that too at some point and gave up, because I didn’t find anyone near me who seemed to have experience with post viral recovery. Any other learnings that you’ve gotten out of working with yours?
I also think that during the initial stages, the inflammation in my body was so rampant that I wouldn’t have noticed any changes from diet, similar to what you describe (I didn’t notice a change then, either). Now, whenever I eat gluten for example (I do again, but only every so often), I can often notice it the next days (skin changes, less energy). So it’s definitely driving inflammation for me. But back during bedbound days it wasn’t noticeable, because there was SO much more going on. It’s like the house is already on fire, what difference would a candle make :) but I think over time, it helped me to not add more fuel.
I agree with that. I went full gluten again and didn’t love how I felt, so I’m pulling back a lot now.
There’s also so much heterogeneity among us that these dietary changes are 100% worth giving a shot. No one has the one secret sauce yet on LC, and there probably isn’t just one.
💯
Also, have you heard of Lily Spechler? She goes by @longcoviddietitian on IG. She is a dietitian who resolved her own LC. There’s another one whose handle is @nutritionwithconfidence, and she’s spoken about treating dysautonomia through nutrition as well.
I have not - will check them out, thank you!!
She’s not particularly well versed in post viral recovery, but she does have three other long hauler clients and she loves learning and reading studies we send her. So we are learning together, and I’m okay with that. I wish I had known a few years ago that this service is entirely free under my health insurance - not even a co-pay!
At the moment, I am getting ready to start treatment for SIBO under the care of a GI doc, so my nutritionist and I are riding that out first before looking at other tweaks. My GI problems have not been touched in 4.5 years by any dietary changes, which has all three of us thinking some other more serious dysbiosis is going on.
Oh wow that does sound like something is going on beyond diet - what a journey for you of figuring all that out. Hope the new treatment will work 🫶
And I had no idea re insurance coverage!! Too late now for me (I don’t have my insurance anymore), but hopefully someone else will see this who might be able to tap into that resource. Thx for sharing!
I found that when I was eating very strictly for 2 years, I created a very negative stress cycle around eating which I am now trying to heal from. This is why I’m concerned about being too strict especially around no gluten, sugar, and dairy which are very difficult for me never eat. For now I’m trying to be less rigid, but really appreciated reading about what worked for you!
Thanks for sharing Talia! That definitely happened for me to a degree as well, and I think these 2 things are super important to balance. I am planning to share more about that in my next post, part 3. I was actually worried about splitting the post for that exact reason, sharing this rigid approach without the balancing, but it did get much too long. Thanks so much for commenting, and I wish you all the best for your healing ❤️
I’ll look forward to the next post!
This is such an informative post Nicole! So similar to a lot of the changes I made when I first got sick - and now have had to change again thanks to raging MCAS. Though I drink 6-8L of water a day 💧 😱
Can’t wait to see you write more on this topic - I’ve shared some dairy swaps in the past and people are really eager for this information. It’s incredible what you can do with real whole foods if you get a bit creative (chia seed pudding, avocado mousse, “cheesy” kale chips anyone)?
I did an Ayurvedic diet for a week and felt insanely better. Really made me realize how much food is impacting my recovery.
Oh wow that quick, that is great to hear. Thanks for sharing. I've been meaning to explore more Ayurveda (and particularly diet), too. Did you manage to keep it up?
I’m trying my best at home but it takes so much physical and mental effort to cook everything from scratch lol so I’d say I’m doing 80%. I’m actually wondering if the treatments that I did (I did a panchakarma retreat) in conjunction with the dietary changes are what made a huge difference for me. Hard to say!
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