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CFS, Gut pain, B1 deficiency and hemochromatosis
Hi I wanted to introduce myself. I am just starting on the low vit A diet and am struggling with a few things.
I had been aware of this new VA as a toxin theory for a while but had deliberately not looked into it since I had recently vowed not to follow any more restrictive eating or dietary approaches. Every time I tried a new intervention things just got worse.
My main issues are CFS and gut pain. There are a shed load of others but these are the ones that debilitate me the most.
It came to a crunch towards the end of February when I had a week of increasing nausea and decreased appetite. I also had constant headaches and my dry eyes had become very gritty over the last few weeks. It got to the point where I vomited after eating. The VA thing had been niggling at me so I input just my daily dairy intake into chronometer and was shocked that this alone put me over 100%. I reintroduced raw dairy a year or so ago after coming off 18 months of GAPS and reading Matt Stones material.
I also have genetic hemochromatosis (diagnosed in 2015) and dairy not only provided an alternative protein source to meat which is high in bio available iron but also calcium somewhat inhibits iron absorption. Seemed like a win win so I had been mainlining dairy, especially cream which I love. This has helped reduce my iron absorption but unfortunately pushed my undoubtedly already high VA levels over the top.
I hit an unfortunate hitch when I tried the Matt Stone metabolism raising, food freedom method and that was marked thiamine deficiency. After a couple of months I had some weird and scary symptoms which pointed to low thiamine and supplementation was an instant relief. I’ve never had such an immediate and strong positive reaction to any supplement before. I tested it by stopping the B1 and the symptoms returned.
The problem is that B1 gives me gut pain that gets progressively worse each successive day I take it and it takes several days for the pain from a single dose to subside. Also I seem to need a high dose of B1 to get relief. This pushed me into reducing my carb intake again to reduce my need for B1. I’m not as low carb as I was but it is a balancing act for me, getting a reasonable amount of carbs but keeping it low enough to only need to supplement B1 every 7 – 10 days. I have recently seen a gastroenterologist who suspects an enzyme problem meaning that I need to flood my system with high levels of B1 in order to get it to bind to the enzyme. That’s probably not technically correct but is the sense of what he said. He is looking at IV B1 but I’m still waiting to hear back.
At the moment I am mostly eating oats, potatoes (the only sources of starch I tolerate at the moment) and beef with a little stewed apple, parsnip, mushroom, white onion and olive oil. I am adding a little sugar and honey to get my calories up. The trouble is this is high carb and is going to push my B1 needs up.
I need to test white rice to see if I tolerate it. I haven’t eaten it for years but know that I can’t take supplements that use rice bran as a filler. I also don’t tolerate rice protein. I’m hoping that if I don’t tolerate it now, I will be able to add it in once my stomach has seen some healing.
I’ve been trying to keep to Grant’s 1 tsp olive oil per day but think I am going to have to increase this.
I’ve been reading Grants books and working my way through the forum posts. I am very grateful to all who have shared their stories and experiences and to Grant who has gone to such an effort to get this information out there and to provide a place for us to meet and learn. Thank you
I’m just feeling a little overwhelmed by the challenges ahead and frustrated at the complications my B1 needs throw into the mix.
Hey @rachel,
When VA comes out during depletion, the requirements for the B vitamins decreases. B1 and B2 are used in so many processes in the body, it probably OK to use them until not needed anymore.
This is a very simple take:
B2 and B3 push fat metabolism
B1 pushes carb metabolism, too much sugar can waste B1
Removing vitamin A could help all three Bs work better with less of them(just from diet).
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Fatigue is also one of my main problem with seasonal affective disorder.
Like you I didn't want to try yet another diet in vein, but when I checked with Cronometer I was easily reaching RDA, some days I had ten times the RDA.
Since I had seen my health decline while following dietary guidelines of more colorful fruits and vegetables and less sugar and found a similar low carotenoids diet for autism which resonates with me and my social impairments, I started toying with the idea. Since then, every time I have more carotenoids, my mood tanks and depression sets in. My energy decreases as well.
Also about the carb thing, I also seem to need more thiamine. Every time, I go overboard on sugar, my health takes a toll. Another pointer to thiamine deficiency for me is low tolerance for yogourt which contains lactic acid which is degraded with the help of thiamine.
Starches don't seem to have this effect on me though, or maybe it's because most of my starches have thiamine... Oats are a good source and wheat is often fortified with thiamine.
Regarding rice, don't feel the need to make this a staple. I get tired of it fast and only have rice a few times a week. Do you tolerate wheat well? If so, white flour can be a good source of calories.
About fat/oil, don't be afraid to increase the amount. I had a week when I put it in everything since I was craving it and it helped tremendously. Fat is not to be avoided on this diet, it's just that most fats can be problematic.
Lastly, maybe you could try pork. Lean cuts should be safe and it's the best source of thiamine apart from supplement. It's also lower in iron which might be better for you.
orion - I didn't know that depleting VA would diminish my need for B vits. Not needing so much B1 is certainly something to hope for.
somuch4food - it's interesting that you find starches less of a problem than sugar. I haven't experimented enough yet to know if it's the same for me. At the moment oats are the only grain I can eat. I was hoping to be really strict with the diet to begin with whilst my VA levels are at their highest and get some healing started.
Whilst my gut is so inflamed I wanted to get both some relief and a more pain-free baseline so that I am better able to see what effect any changes I make are having. That was my reasoning for keeping fat low and keeping as close to Grants diet as I could. However, my choices are to increase my carbs more or to allow more fat so I think I am going to have to up the fats.
I was eating a reasonable amount of pork before this, both because I enjoy it and because it is a good source of B1. I had missed that oats are a good source too 🙂 That is welcome news. I don't use cronometer regularly as I can get a bit obsessive, and the brand I looked up a while back didn't list B1. I'm more careful now at looking at the source of the data and which ones have a more comprehensive breakdown of nutrients. It's all a learning curve that's for sure.
I'm not too worried about the iron content of food. It was nice to have a reduced need for venesections for a while since they tire me quite a lot but on the plus side presumably they remove a bit of serum VA each time.
Thanks for the encouragement and ideas.
Grant's diet is not to be revered as the only or best solution for a low A diet. Our bodies are not the same. Each individual has to find what works best for himself. It's not easy at first, but you truly get to know your body in the long term.
" I don't use Cronometer regularly as I can get a bit obsessive. " That chimes with me. When I use Cronometer, it's more after the fact. For example, if I have a bad day I enter what I ate to see if anything is amiss. Tracking everything makes me orthorexic. I prefer to go with intuition, but that also means I make mistakes more often especially early on.
If you're gonna try rice again, try short-grain rice, it has no fermentable starch in it.
what is this cronometer you all speak of? I looked it up on amazon and it looks like a stopwatch. I am confused.
Hopefully the VA depletion helps a lot with the iron overload. The answer though to hemochromatosis is not to eat dairy instead of meat, it is to get phlebotomies.
Quote from Guest on March 7, 2019, 5:49 amwhat is this cronometer you all speak of? I looked it up on amazon and it looks like a stopwatch. I am confused.
It's a site to track calories and nutrients in your diet:
Quote from tim on March 7, 2019, 5:59 amHopefully the VA depletion helps a lot with the iron overload. The answer though to hemochromatosis is not to eat dairy instead of meat, it is to get phlebotomies.
I thought I had mentioned it in my original post but on re-reading it I can see that I didn't. I have regular venesections (phlebotomies) to control my iron levels however it has been anything but smooth sailing. Although my consultant tried to go carefully with my venesections it went badly and my health declined putting me in a wheelchair for 6 weeks and forcing me to take an extended break from them in order to regain enough strength to try again with an even more careful schedule. It has been a real nightmare getting enough blood out of me to first stabilise and then slowly reduce my iron levels. I have pretty severe CFS and the venesections really knock me back.
It was in an effort to reduce my need for venesections that lead me to explore dietary measures of which using dairy was one. It was successful as well in the sense that I needed fewer venesections and that helped my CFS to improve. However I didn't know then what I know now about VA.
Hopefully the low VA diet will gradually have a positive impact on my overall health so that even if I still need frequent venesections my body is better able to withstand them.