MTHFR and Pyroluria Adventure: Part 2 - The No Supplements for 2 Days Experiment

1st August 2014

Well, that was an interesting experiment! My new doctor arranged for me to get pathology tests for MTHFR and pyroluria today (I will explain what they are eventually). That meant not taking any vitamin or mineral supplements for a couple of days. I was quite pleased about that, I was hoping I might even feel better than normal! Well, yesterday I felt distinctly off-colour but not too bad, and I thought that was as bad as it was going to get. Then this morning I woke feeling not so great so I decided to put on headphones and meditate. I normally find this soo calming but I couldn't relax. My brain was all...fractured and jumping around. Then I noticed my leg muscles were twitching, a lot (magnesium deficiency anyone?), my teeth ached and I had a funny rash on my arm! Lol. Madness! I got out of bed and tried to make breakfast but I felt out of it and faint, almost to the point of thinking I might fall over. I felt a bit better after breakfast and left the house to drive to the special pathology collection place get the tests done. Once I got there I realised I'd left without my wallet (which I never do) and couldn't arrange payment. That and other small dilemmas had me getting teary on and off throughout the day, which I realised were overreactions, but I just couldn't help it, I was ridiculously moody. If I had a sad thought I was likely to start crying.

So, somewhat disappointingly, it would seem supplements really help me to function! "Normal' people are not like this! Lol. SOMETHING is going on! Likely to be a defective MTHFR gene and/or pyroluria says my new doctor. I hope he's right. I could really do with some normal. :)

Unfortunately in my vagueness I also forgot to fast so I have to do one more test on Monday which means no supplements over the weekend! Lol. I think I'm just going to settle back and try and enjoy this crazy ride for what it is.

So MTHFR I just explained for someone. Here:

"MTHFR stands for methylenetetrahydrofolate reductase. It's an enzyme that converts the folate in your food into an active form of folate that your body uses to do lots of VERY important things, either directly or indirectly (like creating serotonin and dopamine, detoxifying the body of heavy metals, turning stress responses on and off, controlling inflammation, creating white blood cells, and HEAPS of other things). If you have the MTHFR gene defect then you can't convert enough folate into the active form and so all manner of processes, mental and physical, start to malfunction. Apparently to have a defective MTHFR gene is not uncommon and it's treated by taking specific supplements and avoiding others. Doctors who know about it tend to think everybody should be tested.”

More info on MTHFR here: http://www.stopthethyroidmadness.com/mthfr/

MTHFR and Pyroluria Adventure: Part 1

30^th July 2014

And following on from that big fat post, last night I saw a new integrative doctor. He believes the reason I'm still struggling with a number of symptoms (weak legs, odd rashes, overall not feeling as awesome as I think I should) despite my great diet, is that I likely have pyrrolle disorder (or pyroluria) and MTHFR. I'll explain them in more detail another time but it basically means that no matter what I eat I'm not able to metabolise or use nutrients properly which then leads to a huge variety of seemingly unrelated symptoms which get worse over time. Everything from my sensitive teeth, to slow digestion, to lowered immunity, to dry skin and thinning hair, the list goes on.

I learnt about pyrrolle and MTHFR via a couple of friends who were diagnosed with both earlier this year. Then it was casually suggested to me by a doctor that this might be my problem as well. If it is (I go for tests on Friday) then that's good news! There's effective treatment via the taking of specific supplements and avoiding others. There's probably dietary modification as well but I haven't looked into that yet. 
I'm excited not just at the idea of feeling well again but that having this knowledge and experience will help me to help others once I start seeing clients. And although more and more integrative practitioners are becoming aware of MTHFR and pyrrolle, many still don't know what it is (my last fancy expensive doctor didn't and neither did the nutritionist I saw a few months back) and so they don't know to test for it. And with conditions like these, approaches that will help most of the population will only work a little with people with MTHFR/pyrrolle if at all.

Exciting times!

It has been an interesting month

It has been a very interesting month or so since I last did one of my longer posts on here. My being quiet has in part been because I've still feeling the effects of that antibiotic. My capacity to do stuff, pretty much everything including thinking, has been significantly less than usual. Yes I've been feeling a LOT better overall, but as soon as I started getting back to the gym and fitting in a social life around study, that was it, I really had no energy left. It's not unusual lately that I go to the gym in the morning on a day I plan to study and then find that I can't think for the rest of the day! I'm all used up. My brain feels full of cotton wool. I can think a bit but it's such an effort to focus. This is, I believe, the commonly referred to 'brain-fog'; a typical symptom of so many conditions connected to inadequate digestion/metabolism and gut-flora imbalances. Although it's been annoying I'm not too bothered. I know I'm improving and I've had similar prolonged reactions to antibiotics before.

The other reason I've been quiet is that for a few weeks there I was feeling all a bit bored and over it. Of food, of nutrition, of study and especially of all the sitting on my butt that it involves. And then there was the assignment which involved the creation of a detailed meal-plan for a client. This was meant to be a taste of what it's like to be a practising nutritionist. I hated it. Lol! I was all "Oh man, I seriously can't be bothered caring that much about what someone eats. I have a hard enough time figuring out what I should be eating." This did not bode well for someone planning to become a nutritionist! 

Jumping to now things I'm glad to say things have shifted. Looking back I can recognise a number of factors that I think contributed to me feeling the way I was feeling. Excuse my whiney tone for these next few paragraphs:

1. I still struggle with my health. I still feel like I haven't quite figured out how to break through a couple of symptoms that still give me ongoing trouble, this is in addition to the antibiotic related fatigue/digestive issues.

2. I have a couple of friends, one in particular who struggles with conditions relating to nutrient metabolism and gut flora issues. When I checked in with her a month or so ago, despite seeing the fancy up-to-date integrative medicine doctor, and cutting out dozens of foods and taking fancy supplements, she was still feeling like crap.

3. It's fucking hard work! Lol. All this bloody cooking and food prep and restricting foods. And for what? I want to be at my best now! Seriously. I'm doing ALL the things! It's been months! I want to be better NOW!

4. I started studying nutrition because I truly thought I could help people. However, after learning all the confusing information that I've learnt thus far I don't know if anyone really knows how to help anyone anymore! Lol! And if that's the case, I'd rather be an artist.

5. I really do need to be an artist.

So yes, up until a week or so ago I was pretty much ready to quit. I started to allow my mind to focus on myself as an artist/musician and make some plans. That felt great. I don't regret that happening at all. 

But then little things started happening. My mum asked to see my food-plan assignment. She thought it was fantastic, which really surprised me. That was nice. She asked for a copy and took it to show my (marathon running) uncle who had recently seen a dietitian and was given a food-plan (for quite a price!). Turns out he preferred my food-plan and took the copy I gave to my mum, and is apparently going to follow that instead! That also felt nice. Very encouraging. 

Despite that encouragement, though, I was still feeling quite decided that I was going to drop out. I started telling some friends and family members about my thoughts of stopping my studies. Well, they didn't seem to like that idea at all. Most of them confronted me in one way or another (some more tactfully than others) which I'm not used to! Lol. Normally they just leave me be to make my own decisions, but it was like they really didn't want me to drop out. As though they thought I was on to a good thing. Like they thought I actually have something to offer people. Like they believe I would actually make a good nutritionist. I don't think I've ever experienced so much encouragement to stick with something before. And as much as I didn't want to be influenced by their encouragement and just wanted to quit and move on, it had an affect on me.

I started reflecting on how people around me have responded to my studying nutrition. Like one family member has drastically cut down their alcohol consumption after I explained what I'd learnt about alcohol metabolism. Another family member now frequently proudly shows me her plate full of veggies whereas it used to be full of stacks of (not particular nutritious) rice-cakes. She keeps telling me how much better eating more veggies is making her feel. And she's gone from being passionately uninterested in nutrition to enthusiastically reading about the science behind cholesterol and atherosclerosis. It's heart warming. My dad in particular has been very pleased I've taken this path. Since the beginning he's been telling his friends and saying "it will be like having a doctor in the family", lol.

Then there's another family member I've been talking to about my current nutritional interest; intuitive eating. It seems I've inspired her because she's bought the book and tells me she feels it's made a positive difference to her life already. And, as someone who's practising eating this way myself, I find it really inspiring talking to her about it. It helps us both.

Then there's the recent glut of health problems that have been popping up in family and friends; lots of 'high' cholesterol and people being encouraged by their doctors to take statins, there's gut-related issues, serious autoimmune conditions, and then there's the next generation coming through to look after. I've subtly offered information to some of these people and, to my surprise, they've taken it on board, more or less, often with good affect. That feels good, like I'm actually able to be help people. What with all these modern ailments popping up these days I almost feel obliged to keep studying to keep us well as a family. Not that that will fall to me, of course, but at least I can be an educated resource of up-to-date information in a landscape of confusing and conflicting information. 

But I think the tide actually turned for me when I caught up with two of my closest friends this past week. One a doctor and one that friend I mentioned above who struggles with metabolism and gut problems. 

My doctor friend was so encouraging of me to keep going. She told me that when she thinks of me she thinks of artist/musician/food-related stuff (there were some other things too, but I forgot). She says it's part of me. And as much as I hate that idea (having been someone who has a eating disordered history and would like to think that food and I are ex-lovers and I will never be identified with it in any way ever again), she's right. What she said also reinforced the idea that it doesn't to be science or creativity. I can do both. I may have to let go of getting top marks in order to have balance in my life, but that's a sacrifice worth making, I feel.

And my other friend, wow, she looked and sounded the best I have ever seen her. She told me it's because she's finally sticking to what her integrative doctor told her to do; ie strictly avoid certain foods and take certain supplements. She was a different person to who she was the last time I saw her. I was stunned. And so encouraged that there is hope. 

Ok. I'm convinced. I'll stick with this and see what kind of integrative nutritionist/intuitive eating counsellor/creativity inspiring creature I turn into. Seat-belt buckled.

Catching up! Posts from Food As Medicine Facebook Page - Part 1

I have been meaning to post simultaneously on my Facebook page and here, but it hasn't worked out that way at all! Here are a collection of posts from the Food As Medicine FB page:

MICROBIOME
One of my favourite subjects at present is the human microbiome; the ecosystem of micro-organisms that live in and on our bodies. Exciting new discoveries have been made in this area recently with profound implications for health and nutrition. I look forward to sharing them with you. Like this one... Did you know that almost 60% of your faecal matter is bacteria, not food/fibre? I dare you to have a good look in the loo and reflect on that.
http://www.ncbi.nlm.nih.gov/pubmed/7359576

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LACTOSE INTOLERANCE
Lactose intolerance! On my tea break from study I read something very interesting about humans and lactose that I hadn't heard before... "Some people get diagnosed as lactose intolerant...after infancy we are all 'lactose intolerant' because the human gut does not produce an enzyme to digest lactose, called lactase. So how do many of us manage to digest milk? Because we have particular species of probiotic bacteria in the gut which do this work for us. Some of the most well studied lactose-digesting species are physiological strains of E.coli. People who cannot digest lactose have abnormal gut flora; they are lacking those probiotic bacteria." (From Campbell-McBride's 2007 book 'Put Your Heart In Your Mouth'). She then suggests that rather than substitute highly process lactose free dairy products or soy, focus on restoring your gut flora by eating fermented food and taking good quality, multi-strain probiotics. *eyes my lost lover, cheese*

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SOY- HEALTHFUL OR NOT?
So what's the deal with soy? Is it healthy or not? This is Dr Campbell-McBride's view (from her heart health book 'Put Your Heart In Your Mouth'). From reading similar from a number of sources it's become my view also; avoid soy unless in well fermented forms like tempeh, miso, tamari, natto and eat in moderate amounts. 

The last paragraph that runs over the page is very interesting also, it reads: " Western producers of soy would like you to believe that the health of Japanese people depends on their consumption of soy. The truth is very different. Many of the health benefits of traditional Japanese cooking can be attributed to seaweed, which is consumed daily in good amounts. Fresh and dried seaweed is full of nutrients..."

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WHICH POO ARE YOU?
Which poo are you?* Had a brief introduction to poo in class yesterday with lots more to come! Apparently we should aiming for types 4-5. Types 1-3 are signs of constipation and 5-7 are diarrhoea. Enjoy your dinner. 

* You don't have to answer that question.

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DANGERS OF EXCESSIVE SITTING
Is sitting too much sending you to an early grave? I hope not! I'm spending a LOT of time sitting studying these days so am grateful for this reminder! I'm now considering getting a desk I can use while standing. Or at least one of those funky chairs like in the animation. At college I walk up and down the stairs and stretch every chance I get. The other students have asked if there's something wrong with my back. Lol! No, I'm just used to having an active job not sitting at a desk! Right now I am standing using my laptop  Yay for standing! http://vimeo.com/71441709

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GRAINS, GLUTEN AND BRAIN HEALTH 
Thought to share what I'm reading lately, outside of anatomy and physiology and chemistry textbooks. Dr David Perlmutter's latest book Grain Brain is excellent! I highly recommend it to anyone who wants to preserve their health. In a nutshell Dr Perlmutter is a neurologist and a Fellow of the American College of Nutrition. In his practice he treats many people with Alzheimer's along with other neurological disorders. In Grain Brain he explains the strong links between gluten/starchy carbohydrates/sugar, and chronic degenerative diseases such as autoimmune diseases which include neurological conditions such as Alzheimer's.

This is the 5th book I've read in the past year that says everybody should avoid gluten, celiac or not. Two of those book were written by practising neurologists. who are also nutritionists. I trust them. I stopped eating gluten about 6 months ago. I stopped eating wheat about a year before that. It made a HUGE difference to how I felt.

Here's some links if you're interested:
http://www.drperlmutter.com/
http://articles.mercola.com/sites/articles/archive/2013/09/29/dr-perlmutter-gluten.aspx

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LIQUID SALAD
What is it and why?

Blended vegetables with apple cider vinegar. I call it 'liquid salad'. This mix is kale, parsley, alfalfa and mung bean sprouts, and carrot.

I started making it when I was having trouble digesting salad and raw vegetables which happened after being predominantly (approx 75%) raw vegan for too long (about 4 months was too long for my body). I was getting significant stomach pain and bloating every time I ate something with salad! Which was almost every meal. I also lost muscle mass which was crappy because if you lose muscle mass your metabolism drops. I didn't realise that was what was happening. Lesson learnt!

Anyhoo. I noticed that despite having trouble with salad, I had no noticeable trouble digesting green smoothies (raw blended veg and fruit).

Initially to help heal my digestive system, because it was obviously distressed, I ate only cooked veg, soups, fermented foods and meat for a few weeks (GAPS protocol). After a while though, I found myself craving fresh raw vegetables but found my stomach still couldn't handle them in the kinds of amounts I tended to eat. So I tried blending them and had no problem at all! Yay!

I don't drink it like a smoothie, I spoon it on like a dressing or cook it a little and it becomes a bit like a sauce. I've made some tonight partly because it's a really quick and easy way of eating and digesting raw vegetables, and partly because I've gone a bit hard on the raw veg lately and I think maybe I've stressed out my tummy a bit. It could probably do with some mollycoddling and rather than have no raw foods at all, I'll cut down a bit and add liquid salad. The apple cider vinegar makes it yummy and helps it keep better in the fridge.

Dinner - what and why

Dinner  So, what and why:

Organic spinach, pumpkin, broccolini and onion - Why? Because organic vegetables are more nutrient dense ie have more vitamins, minerals and phytonutrients and don't (shouldn't) contain pesticide residue. Also different coloured vegetables contain different phytonutrients that all play different roles in the body. It's important to eat a variety of colours and types of vegetables to get a good mix of nutrients.

Lightly steamed - Why? So that heat sensitive nutrients (like vitamin C, folate and phytonutrients) are not completely destroyed as they would be if overcooked, and so minerals are not lost in cooking water if boiling. Here's a good table on vitamins and what their individual vulnerabilities are:http://www.beyondveg.com/tu-j-l/raw-cooked/raw-cooked-2e.shtml Also I still don't tolerate too much raw veg so eat my veg mostly lightly steamed these days.

Raw organic cucumber - Why? Because beneficial enzymes and some nutrients are going to be lost in steaming, and I can handle a bit of raw veg. Enzymes help to digest your food which takes some pressure off your digestive system they also help with numerous other bodily processes, more on that another time.

Organic sauerkraut - Why? Fermented foods contain probiotic (good) bacteria, SO important for EVERYTHING. I thought 60% of your immune system is located in your gut but my teacher said that it's up to 80%. Beneficial bacteria play a vital role in helping to maintain your immune system. Fermented foods also contain those beneficial enzymes.

'Grass-fed and finished' beef mince - Why? Because cows naturally eat grass, not grain. When they eat grain their meat becomes unusually high in omega 6 fatty acids that in high concentrations in the human body are inflammatory and inflammation leads to so many bad things! Heart disease, cancer, autoimmune diseases, diabetes etc. Most western diets provide very high omega 6 levels, we don't need more from beef. When grazing cattle are grass-fed and finished (meaning grass-fed all the way through, not grain-fed at the end for fattening up before slaughter like most are) their meat apparently has more omega 3 than fish! Omega 3 fatty acids counteract the inflammatory effects of omega 6. Good stuff.
Here's a whole lot of scholarly articles on omega 3 and 6 and inflammation for those that appreciate them:http://scholar.google.com.au/scholar?q=omega+6+inflammatory+response&hl=en&as_sdt=0&as_vis=1&oi=scholart&sa=X&ei=LW4hU7yZGZCEkgX9hoHICA&ved=0CCkQgQMwAA

At least a tablespoon of cold pressed, virgin coconut oil - Why? You'll notice there's no grains in this meal and no starchy veg either. That's common for me at present. My diet is currently very low in carbohydrate (as I was reacting to grains and high carb foods as a result of being vegan, my body didn't like it for more than a short period), and so my energy comes from fat. Good fats are so important for the brain. Most people don't get enough good fats. More about them another time.

Orthorexia Anyone? Part 2

The second thing I found myself doing that helped quieten the obsessive good/bad food thoughts in my head was actively not listening to them. I told my long story of finding my way into eating disorder support groups first because I don’t know if I could’ve done this second step if I wasn’t going to those meetings. What I noticed about going to the support groups was that it didn’t stop the thoughts, but it did make them quieter and less powerful. And that made all the difference. For the first time I actually felt as though I could, if I wanted to, just ignore them, like a radio in the background. And then little by little they became fainter and fainter. As long as I kept going to meetings though! Lol. Unfortunately if I stopped going or stopped being in touch with my friends there, at least in the first year or two (yes, this process took years!) the thoughts became loud and demanding again. Quiet or loud they never disappeared completely. They were, and still are, always there if I want to listen and they get louder and stronger the more I engage with them. And they’re deceiving things. They sound so convincing and rational. They throw facts at me, and they provide references! They KNOW what’s right, they tell me. What I found, however, was that when I stopped listening to them I got HEALTHIER. A lot healthier. That had them stumped. I did put on a bit of weight for a while because when I stopped restricting then there was still my overeating to address. But I felt SO much better, and it was like I had to go through a period of allowing myself to not restrict or control my food at all as a way of disconnecting from being so identified with those thoughts that had been so dominant in my head for so long so I could then move beyond them.

More to come. Do you relate? Would love to hear from you.

https://www.facebook.com/myfoodmymedicine

Orthorexia Anyone?

So, I'm at the end of trimester 1 already and I've barely posted on this blog at all! Lol! I have however been very active and posting often blog-sized posts on my Facebook page https://www.facebook.com/myfoodmymedicine . If you are interested in what I'm discovering as I study that's the place to go, at least for now.

And what has been the biggest lesson I've learnt so far? Is it that gluten is the devil? Is it that fermented foods and bone broths are awesome? Is it that saturated fats are good and polyunsaturated fats are bad? Is it that the human microbiome is one of the most amazing things in the universe?

Maybe that last one, but no, I think there's one even more important discovery that I'm revisiting after many years.

I have a tendency for orthorexia, ie an obsession with being healthy that can lead to ill-health. It totally got me in my 20s and once I began to recover for a long time things like walking into the health food aisle at the supermarket felt equivalent to walking into a bar had I'd been an alcoholic, I just had to avoid it or my head would go crazy.

But I remember what it was like before I recovered. It was awful! Constant preoccupation with food; what I'd eaten, what it was doing to me, what I'd done wrong from the last meal, yesterday's meals, a lifetime of meals, what I had to do to fix it. Except I could never fix it enough. And I knew that because I never felt ok. If I felt unwell in some way (and I became HYPER-sensitive to every little twinge in my body) it must have been what I'd eaten, or not eaten.

Last week on my Facebook page I wrote a post about listening to one's body, as opposed to one's head, when it comes to food, exercise, anything. Someone messaged me to ask if I had any pointers for how to get out of one's head and into one's gut feelings in relation to food. In replying I realised, unfortunately, that I had relatively little recent experience of doing this. I did however have years of experience of how I came to be able to do that in the past, to share. And what perfect timing for me to be reminded by what I had to say:

"How did I stop my head?

I think the first thing that helped was support groups. I actually ended up there quite by chance. I didn't think I had an eating disorder (it was a relatively mild eating disorder as far as eating disorders go, but it was disorderly enough to have me constantly preoccupied with food and having trouble breathing when I ate ie panic attacks at some meals and binging at others). I was studying music therapy at uni at the time and I had learnt about community support groups and 12-step groups and how effective they were. I had also read that the only way to really understand why they're so effective was to join one. So I learnt about of all the different groups and wondered where I might be able to fit. I didn't drink or smoke or do drugs or have a sex problem so they were all out. Then I saw OA, overeaters anonymous and I thought "well thoughts of food do interrupt my meditation, maybe I'll go there". I didn't think I had any problem at all with food. I thought I was the only one who knew how to eat properly, I just couldn't do it perfectly enough.

So I went and it blew me away. They all talked like the thoughts in my head sounded (more or less)! I thought I'd go and be surrounded by fat people but they were mostly normal sized, just all obsessed with food, either using it for comfort (binging) or for control (restricting, health obsession/orthorexia, bulimia, anorexia). And what was cool about being there was that they recognised it for what it was, and went to the meetings as a way of staying aware and lessening the power food had over them, just by talking about what they were experiencing and being heard by other people who related and accepted them just as they were, and then by listening to other people's experiences. Going there helped me to be aware of patterns I just had never seen before. The hugest one I think was how much of my 'food problem' was actually a thinking/obsessing problem.

It became clear that for me food was about control. I felt like if I could just get my food right then everything would perfect. But I just couldn't get my food right. The more I learnt (it was mid 90s I was into macrobiotics and food combining and candida diets) the harder it became to feel ok when I ate, and the crazier/more out of control I felt, which to me obviously meant I hadn't got my food right so I obviously just had to try harder, to research more.

When I started going to OA I felt such relief at being around people who talked like I thought and who had behaviours like mine that I was able to relax for the first time in ages. I wasn't alone struggling with food any more (this was pre-internet, it was a lot easier to feel alone! Lol). I didn't realise just how much energy I had caught up in 'trying to eat right' and because my brain didn't think I was doing it right, it thought the best way to remedy that was by thinking about food, constantly. Lol. Trying to figure out what I'd done right, what I'd done wrong, why I was feeling this, why I was feeling that.

Where I'm getting to with this is that the relief and support I felt by going to OA made me feel like it was finally safe to let go of the thoughts in my head. I didn't feel like I had to be in control because I felt supported and safe enough in that environment that I felt quite sure I wouldn't die if I ate something 'wrong'.

So that was the first step that helped quieten my head."

Then I wrote more! But I'll leave that for another time. Very grateful to the lass who inspired me to write about this! It's really had me rethinking my current relationship with food and just in the nick of time I think!