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Dietary morass

So last year I had enough energy to try this whole AUTOIMMUNE PROTOCOL (AIP) eating plan.

Spring comes, I talk to a nutritionist and it appears I might have an oxalate issue. Spend some time reading up on that and it is not pretty. But, I DO have mystery kidney stones and I do have the genetic variant associated with oxalate processing problems so it's possible. (Of course there's not good actual TESTS for this, apparently, so you just have to try and see.)

I slowly begin to reduce oxalates. (Actually the nutritionist has me start mixing up a mineral water solution and I think that really helps too. AT FIRST.)

A bit later I talk to the nutritionist again and it seems I might have a sulfur intolerance issue as well. I quit taking NAC, Allicin, and liposomal glutathione and suddenly feel a LOT better. AT FIRST.

And just to make things more fun, SIBO is back.

The oxalate people say, Ehh, SIBO- Quit taking so many rounds of herbal probiotics it kills off your gut flora. :alien:

The ND says .... Hey, SIBO- More rounds of herbal probiotics!! :thumbsup:

:bang-head:

For low oxalate, the green vegetables you can eat... well let's say there's a lot of crucifers. Which are high in sulfur. Suddenly my long-standing lunch (protein+ homemade coleslaw, heavy on red and green cabbage) looks 100% indigestible to me. And my dinners have been Broccoli Cauliflower Bok choi. Sulfur party!

I feel completely at a loss. Am I destroying whatever shreds of gut flora I have with yet another round of oregano?

And, If I'm having trouble with sulfur AND oxalates what the heck is there to eat?

(actually there is a handout on at least one of these things. https://drruscio.com/low-sulfut-diet/ )

Oh by the way I have histamine issues too OF COURSE. The venn overlap areas get smaller an smaller..

(I trust that anyone who has an oxalate issue has already found the bewildering maze of low ox information at "trying low oxalates" on fb)

This is all coming to a head today because I thought I would get started on the SIBO protocol and take some Allicin last night, for the first time in months, which in the past I've generally tolerated okay.

Today = full inflammation and incapacity, who-eee! So yeah sulfur intolerance seems very likely.

You know that famous Rumi quote, Somewhere there is a field beyond right and wrong, you will find me there...

Somewhere there is a morass of confusing and contradictory health guidance, kind of like a big deep mud puddle that is also somehow a sticker bush... , you will find ME there. :ill:
(edit: when I wrote this I didn't realize how applicable that statement is to ME/CFS as well. An inadvertent and unfunny pun.) (hey I try to keep aspirations LOW very very LOW.) ;)

Just venting. I know I need some help with this and have some appointments coming up next month. Just don't know what to do in the meantime.

On the upside:
- It rained a little last night for the first time in maybe 60 days or more.
- My multiple risk factor dad was able to get CV #3 the other day- Because his DR was sick and tired of throwing out doses when they open a vial. Also he was at 8 months since #2, he got in early.
- I just made a big batch of soup full of lots of sulfury things (game meat, bok choi, onions)... the upside is I have a freezer so I can freeze it for later when maybe I can process sulfur a little better.
- Oura is still generally helpful, although it doesn't pick up on inflammation issues and thinks I should be out walking somewhere about now

Comments

The sulfur issues did get better for me...if that's any help. I mean I don't overdo them now but I can have them once in a while without getting the migraines I used to.

I never checked into oxalates. I have seen them mentioned on PR but I've always felt like I have enough on my plate to deal with already (okay, so that pun was slightly intended). :lol:

Plus, I've eliminated so many foods already. I'm actually now trying to add some foods back in again just to give me more variety but like the popular saying is, I'm trying to start low and go slow. Like you though with the Allicin, sometimes even that doesn't work.

(Have you tried just garlic and not the Allicin which I think is a concentration of? Sometimes I do better with getting my supplementation from foods...like liver and molasses for iron rather than an iron supplement.)

Hope you can find some answers to your conundrum.

Anyway, just some thoughts. Sending "Dietary morass" sympathies your way.
 
I sympathize. I've been having particularly sluggish/brainfoggy days, and I'm pretty sure the culprit is lettuce. Don't jump to the conclusion of pesticides or contaminated water; this is organically grown in my own garden. Ordinary head lettuce. Years ago, lettuce seemed to give some relief from ME symptoms (the first few times I tried it, then it stopped working). Now it's become evil. :devil:

Onions were safe for years, then caused symptoms, and now seem safe again. I was quite sensitive to nightshades at one point, but I didn't have a problem the last time I gave into the craving for fries.

I'm definitely in favour of retesting foods and supplements occasionally. Previous bad things might be okay again, and previously good things might become evil.
 
Aahhh oxalates! Only too familiar with them. Only started having problems about 3 years ago, stumbled across the cause of my problems on a thyroid site. I discovered the low oxalates FB group but I've never gone down to low oxalates, I just don't want to keep cutting food out (it's bad enough as I have histamine intolerance), so I sort of eat to my tolerance level, although sometimes get dumping.

I think a functional B2 deficiency may be behind the lack of tolerance to oxalate so I'm working on that, along with B12, iron, Vit D3 and various other supplements.

But yeah, sympathies from me.
 
I get it about the cutting more food out. I went into a multi-month mini tantrum about it. The low oxalate diet is about the most depressing of the various "healing" eating protocols I've seen. Meat and radishes! Meat and turnips! For a treat, how about some peeled, boiled carrots?! :sluggish:

I actually did sign up for a low ox AND low histamine online class (they co-occur frequently and I also have histamine issues also).....

and the teachers said, If you focus on reducing oxalates first, you can often calm the mast cell response and ADD higher histamine foods over time. Of course you do have to reduce oxalates SLOWLY to avoid dumping.

I think I'm only at moderate ox right now ( because I can't make myself count the damn things yet), but already I'm seeing such significant improvements in stamina and energy that it seems absolutely worth it, even so. I tell myself:

a) I got to go to India and eat curry once. Now, I could cry about no more curry but...I want to be able to go for walks.

I actually found myself WALKING INTERVALS this week because I had a little EXTRA ENERGY :woot::thumbsup: It felt AMAZING. I started to daydream that I could maybe make the Health Rising "What Worked for So and So" page :angel: They were short little intervals but still, that's the first time since I got sick. WOW!

b) Once I figure out how to do it, maybe less variety= simpler cooking?:rolleyes: and more time for other things?

c) Sheep cheese. After a long time off dairy, and on high doses of magnesium, I started craving calcium. There's a local sheep dairy and they make THE MOST AMAZING fresh sheep cheese. I'm tolerating it very well. Now if I can only make the time to experiment with the weirdo low ox bread recipes to go with...
 
I actually did sign up for a low ox AND low histamine online class (they co-occur frequently and I also have histamine issues also).....

I have both issues too. Miserable, isn't it! At first, reducing high histamine foods did the trick and after a few months I'd re-introduced most of what I'd cut out and that was good. For a little while. Then it started again, only I couldn't regain tolerance. That was my lowest point about a year ago. I didn't want to eat anything because it made me feel bad a lot of the time. That was the point where I stumbled across Dr Greg Russell-Jones' group on FB. I think he's mentioned elsewhere on this forum re B12 deficiency/transdermal oils. He's a biochemist with a high profile. Anyhoo I joined the group and many things began to make sense from a biochemical point of view. He says functional B2 deficiency is behind both oxalate and histamine problems. I did an OAT and sure enough, B2 and B12 deficient.

I can see how I got to the point of B2 deficiency, because in previous years I'd gone gluten and dairy free in a (futile) attempt to lower TPO and TG antibodies (I've autoimmune thyroiditis). By eliminating wholemeal grains and dairy I'd managed to inflict the deficiency on myself. So now am trying to reverse all that, it's slow going. I also added in transdermal Iodine, Selenium and Molybdenum (that fixed my low stomach acid/reflux problems overnight) and then added in B2 and B12. It's going to take time but things are going in the right direction.

I realised recently just how much histamine intolerance disrupts my sleep, too. I still have to avoid a lot of foods and some days I am sooooo fed up! However I have made some progress. I ended up very underweight and I figured if I keep eliminating foods I'll starve to death!

I'm really glad you're seeing such a good improvement! Wow! :woot:The sheep cheese - do you know how long it's aged for? I find I can tolerate mild cheddar as it's not aged long, but not strong cheddar.
 
Interesting re: B2 I will have to look into that. Have an appointment coming up with nutritionist so I can ask.
Sleep is very disrupted here also. Such a drag.

Yes the whole point of the sheep cheese is that it is FRESH not aged... they only make it part of the year. At some point I might try the more aged versions but not for a while yet.
 
Suddenly my long-standing lunch (protein+ homemade coleslaw, heavy on red and green cabbage) looks 100% indigestible to me. And my dinners have been Broccoli Cauliflower Bok choi. Sulfur party!
Also a boisterous festival of seriously goitrogenic substances. If you have any thyroid issues, they could be compounding them considerably.

Ain't life grand ....

I said if before a year or so ago, but I'll say it again: I love your style and the way you express yourself ....
 
I actually found myself WALKING INTERVALS this week because I had a little EXTRA ENERGY :woot::thumbsup: It felt AMAZING.

Yes, even those discoveries that only work for a short time make a huge difference in our outlook on life. "I managed to do it once, so maybe it's possible to do it again!!! :woot::woot:" Just proving that it's not irreversible damage makes a huge difference.

At one point, I had chronic neuropathic pain. Walking was no fun because my thigh muscles ached. Then I tried LDN, and the next morning I went for a walk, reached the point where I'd given up the previous morning, and kept walking ... and wasn't hurting. I kept going right up a very steep hill and still felt fine. I ended up walking several more km just because I could! So yes, I totally understand how it feels to be able to enjoy being more active again. Keep on trying! :thumbsup:

a) I got to go to India and eat curry once. Now, I could cry about no more curry but...I want to be able to go for walks.

I got really lucky. Curry, or rather the cumin in it, was my most effective ME treatment. I was so hopeful that curry (cumin) would be an effective treatment for everyone's ME. Alas, everyone else wrecked my chances for a Nobel prize by not responding to cumin the way I did. :(
 
Sleep is very disrupted here also. Such a drag.

There are lots of things that can unexpectedly disrupt sleep. For me, quickly digested carbs after 2:30 PM will pretty much guarantee waking at ~2:30 AM with no hope of further sleep. Physical or cognitive exertion will do the same.

When you're testing things that you suspect disrupt your sleep, keep in mind that what is safe at one time of day might not be safe at a different time. I haven't found anything with a delayed effect greater than 24 hrs, but I don't think that's an impossibility.
 

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CedarHome
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