Autoimmune Thyroid Disease

An Unfortunate and Lengthy Adventure in Misdiagnosis

Archive for August 2007

What I eat these days

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I’ve got out of the habit of eating breakfast. I used to eat boiled or scrambled eggs, but recently I haven’t had much of an appetite. Instead of having a tea or coffee, I drink a tablespoon of double cream in hot water. I’ll drink this throughout the day if ever I feel peckish.


Eggs in their many glorious forms!

Sometimes I make a homemade quiche with a fat-heavy Elizabeth David recipe. The pastry has more butter in it than flour, and the filling is five egg yolks, one whole egg, and a pint of double cream. Mmm. I put bacon and cheese on my partner’s half. I leave my half plain and it tastes like a custard tart, or I sprinkle some mild cheddar on top as I can tolerate a bit.

Sometimes I make very fat pancakes – two eggs, a couple of fluid ounces of double cream, a slightly heaped tablespoon of flour and a pinch of bicarb, fried in an ounce of butter. You can eat them with savory extras, or add sugar. Pancakes like this are fragile and don’t flip. You need to slide them onto a plate and turn them over by hand.

Or I’ll have a couple of eggs plain – boiled, poached or scrambled – sometimes with a slice of bread slathered in butter, sometimes with sushi rice (egg fried rice), sometimes I’ll have a bowl of porridge or wheatgerm, or rarely a small portion of well buttered pasta. I’m trying to get used to the taste of goat’s milk.

Sometimes we’ll roast a fresh chicken and eat half the chicken for lunch and the other half for tea.

I oscillate with carbs at lunch time. Sometimes they make me want to snack during the afternoon or they make me feel fat or sick (anything with white flour in it can make me feel sick). If I’m dieting I’ll just have eggs and a creamy drink with a spoon of sugar and that tides me through. I’m lucky: I could eat eggs forever and not get bored of them.


Tea usually consists of one portion of meat and one portion of carbs.

I usually eat a 4 ounce portion of beef mince. Though mince is supposed to decay faster, I actually tolerate it better than beef steaks. I’m convinced the farm shop where I buy it mince offcuts of meat that haven’t been hung. Alternately, lamb chops or chicken. We split down whole chickens. We freeze meat in meal sized portions, then defrost in hot water ten minutes before we cook. I fry in a tablespoon of beef tallow. About once a week I’ll get some white fish and shellfish in. Clams, mussels, oysters, and squid are all really nutritious.

If I haven’t had a bowl of porridge or wheatgerm earlier in the day, I might eat one after eating some meat, or have some rice, pasta, bread, or potatoes. I have problems with jacket potatoes – they give me glutamatey symptoms, but I seem to be okay with fried potatoes. I prefer wheatgerm and milk because it’s more nutritious than the other options, though it’s easy to get addicted. The size of this portion is quite small – one ounce of oats or one and a half ounces of wheatgerm with a cup of milk, two ounces of rice, a couple of slices of bread, one hand-sized potato.

I tend to go on and off wheat/oats/milk – two weeks on and two weeks off is my usual pattern. When I diet instead of having carbs I’ll have mince with a couple more eggs. Mince and eggs scramble together really nicely, I don’t know why people don’t eat it! I try to diet a little bit for a week or two then stop dieting for a week or two. I’m anxious not to upset my metabolism too much. The weight seems to stay off better if I take it really easy and stop pressurising myself. Since I started doing this I’ve lost my need to snack all the time and I’m not bothered nearly as much by bread, glutamate and salicylate-related weight gain. I’m the lightest I’ve been since the Christmas before last.

I am currently trying to get used to goat’s milk (yeuch). It does seem to be less addictive/analgesic than Jersey milk. I’ll probably do an isolated trial some time and use it to make rice puddings or just drink a cup plain as my teatime carb portion.

A one or two times a week I might have a portion of mixed beans and pulses instead of the regular carbs. I boil up and cook several different types in separate pans as they all have different cooking times, then split them down and freeze them in different portions. I cook them straight from frozen. For some reason they taste better and are easier to digest after being frozen and cooked again. They’re great for soaking up vast quantities of butter. I can’t eat them every day or I get aminey/glutamatey symptoms like tinnitus.

A one or two times a week I’ll cut up a ripe conference pear and either cook it and eat it with cream, or eat it raw with some big dollops of Häagen-Dazs vanilla ice cream instead of the regular carbs. I can’t eat this every day or I’ll have salicylate symptoms and wake up groggy.

Sometimes at the weekend if my partner is eating lettuce or cabbage I’ll have some with him. When it’s Brussels sprout season in the autumn and winter I might eat those a couple of times a week. One of the biggest psychological barriers I’ve had to get over is not eating fruit and vegetables every day. I feel better without them. Sometimes when I pass the kitchen cupboard I’ll dip my finger in my tub of powdered ascorbic acid and that’s my RDA.

That’s it. It probably sounds like I don’t get a lot of variety, but I actually really enjoy having the choice taken away from me. I never really liked strongly flavoured foods, and I used to be very indecisive and anxious about what to cook all the time. A lot of tribes people live on equally limited diets – just whatever meat they kill and the same local carbohydrate source every day, whether it be potatoes, yams, gourds or whatever.

It probably also sounds like I don’t eat much. I actually average 1,800 calories a day, appropriate for my height and weight, and much less when I’m dieting. I’m actually shocked when I hear the vast quantities other people eat. I could never even imagine eating half a kilo of meat or four or five servings of grains in a day.

A lot of my calories come from butter and cream. I actually feel really good since I started drinking so much cream. My teeth feel smooth and clean all the time in spite of eating carbs and sugar, even when I wake up in the morning. It must be the vitamin K.

I’m not worried about my nutrition at all. I’ve had people from WAPF patronise me about what I eat, but I’m not actually low on anything and I achieve the RDAs of several vitamins that many other people are really deficient in, like vitamins D, E, K, B6 and folate. When I see the way other WAPF members eat, I know in spite of all the talk that they’re not getting those RDAs! My diet is probably more nutritionally balanced and nutritionally dense than ninety five percent of the population, and none of it’s from vitamin supplements or fortified foods.


Written by alienrobotgirl

30 August, 2007 at 8:41 pm

Posted in Failsafe Foods

Eye contact in autistics

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Brain tests at UW-Madison suggest that autistic children shy from eye contact because they perceive even the most familiar face as an uncomfortable threat. […]

Tracking the correlation between eye movements and brain activity, the researchers found that in autistic subjects, the amygdala — an emotion center in the brain associated with negative feelings — lights up to an abnormal extent during a direct gaze upon a non-threatening face. Writing in the March 6 issue of the journal Nature Neuroscience, the scientists also report that because autistic children avert eye contact, the brain’s fusiform region, which is critical for face perception, is less active than it would be during a normally developing child’s stare. […]

Notably, the UW-Madison study overturns the existing notion that autistic children struggle to process faces because of a malfunction in the fusiform area. Rather, in autistic children the fusiform “is fundamentally normal” and shows only stunted activity because over-aroused amygdalas make autistic children want to look away, says senior author Richard Davidson, a UW-Madison psychiatry and psychology professor who has earned international recognition for his work on the neural underpinnings of emotion.

“Imagine walking through the world and interpreting every face that looks at you as a threat, even the face of your own mother,” Davidson adds. Scientists have in the past speculated that the amygdala – which has been implicated in certain anxiety and mood disorders – plays a role in autism, but the study directly supports that idea for the first time. Eye contact triggers threat signals in autistic children’s brains

I’m totally freaked out by the picture of the man’s face on this page by the way.

It appears to be glutamate receptors in the amygdala that govern fear response, something that ties in with the suspicion of abnormal glutamate function in autism and asperger’s.

I have had a serious, socially disabling inability to make eye contact for most of my life. I only became self-conscious of this during my teens and it was something that really frustrated me and I tried very hard to correct it. Although all I wanted to do was stare at the floor when people talked to me, I would wrestle with myself to try to behave normally and make eye contact. What I felt when I made direct eye contact with people was fear, almost pain. The level of fear ranged from intimidation up to actual stabs of terror. Most often when I had to speak to strangers I would physically tremble.

People find it rude when you don’t look at them when they are talking to you, and I was told off many times for not making eye contact – people assumed that I wasn’t paying attention. The coping mechanism I developed was to repeatedly make eye contact very briefly before looking away again, and to try to appear to be concentrating on what was said to me when I looked away with a ‘concentration frown’ expression. Apparently I wasn’t very good at this expression because people often asked me “what’s wrong?” – misinterpreting what I was trying to express as worry or anxiety. This trait of mine was interpreted as shyness by my family. Asperger’s wasn’t even recognised until 1994.

I’ve chipped away at this fear over the years. It was only in my mid to late twenties that I began to make real headway. I still find it very difficult to look people in the eye for more than a couple of seconds, and often I can only do this by unfocused my eyes and looking through them, smiling and creasing up my eyes in the hopes that this disguises my unfocused gaze. The only people I can genuinely look in the eye for more than a couple of seconds are my partner and my sister.

Written by alienrobotgirl

30 August, 2007 at 4:37 pm

Posted in Autism

The folate trials

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For want of cash, medical resources and obscure genetic knowledge, I’ve been doing methylation experiments on myself for a couple of years now. I spent my house renovation time continuing that. The events described below are a dramatic portrayal not an actual diary, and are based on multiple, repeated experiments.

The quantities described below are all roughly EU RDA amounts – around 200mcg for folate (any more just doubles the symptoms).

Folic Acid

Day 1: This seems to have helped a lot with my brain fog.
Day 2: This stuff is pretty good. I feel on top of the world! Maybe I’m cured!
Day 3: Hmm, I feel pretty awful if I don’t take this stuff.
Day 4: What is with these rashes, insomnia and nightmares? Why do I have brain fog? I took my folic acid! Maybe I need a higher dose today… Yes, I feel a bit better for that.
Day 5: I am totally dependent on this stuff and it’s making me feel rotten. I have had brain fog all day in spite of taking folic acid. I can’t take a higher and higher dose every day to clear my brain fog!

Folinic Acid (5-formyltetrahydrofolate) – unfortunately this supplement also contains an RDA quantity of methylcobalamin, which obscures results somewhat

Day 1: This seems to have helped A LOT with my brain fog!
Day 2: Damn this stuff is amazing! I am going to use this all the time! I feel great! Wheeee!
Day 3: Why have I got the shakes and brain fog? Never mind, I’ll feel better when I’ve taken some folinic acid! Hmm, that didn’t work as well as I’d hoped.
Day 4: I feel like death warmed up. I am walking around like a zombie. I have to stop taking this stuff before it kills me.

Food Folate (5-methyltetrahydrofolate, 5-MTHF) from failsafe food (mixed beans/pulses)

Day 1: I am having minor issues with bean chemicals, but I feel pretty good and clear.
Day 2: More issues, but I feel pretty good and clear. This tinnitus is a pain.
Day 3: Issues are outweighing the good feeling; I may need to take a break soon. I seem to be gaining some weight. I have tinnitus and insomnia now.
Day 4: I still feel good/clear, but the symptoms are becoming a problem.
Day 5: I feel a bit foggy and my skin is not great, I really need a break.

Food Folate (5-methyltetrahydrofolate, 5-MTHF), Betaine and a bit of MeB12 from failsafe food (wheatgerm with milk)

Day 1: I am having minor bloating issues, but I feel pretty good and clear.
Day 2: More bloating issues, but I feel pretty good and clear. I want some more wheatgerm.
Day 3: I may need to take a break soon. I seem to be gaining some weight. I seem to be craving wheatgerm. Gosh it’s making me sleepy.
Day 4: I still feel good/clear, I seem to be gaining some weight. I feel pretty bloated. I can’t be bothered to do anything.
Day 5: I need to take a break before I get fat and lazy.

Food Folate (5-methyltetrahydrofolate, 5-MTHF), B12 and SAMe from NON failsafe food (liver)

Day 1: I am having some issues with chemicals, but I feel pretty good and clear.
Day 2: I seem to be feeling okay today. I am itching though and have some dermatitis.
Day 3: I seem to have a headache and be itchy and my skin looks awful. I don’t feel as clear today.
Day 4: I feel pretty foggy and awful today with the same symptoms as yesterday. Wish I could get rid of this horrendous back pain. This really can’t go on.

Low food folate failsafe diet

Day 1: I feel fine and I’m glad to be off the wheatgerm/beans.
Day 2: I feel much better but I have some wheatgerm cravings.
Day 3: I feel fine.
Day 4: I feel fine.
Day 5: I seem to be a little bit more sensitive than usual.
Day 6: I do seem to be a bit more sensitive than usual.
Day 7: I think I felt marginally better when I was eating wheatgerm.

Methylcobalamin (Methyl-B12, MeB12)

Day 1: This seems to have helped A LOT with my brain fog! Wish I could get to sleep though.
Day 2: Damn this stuff is amazing! I am going to use this all the time! I feel great! Wheeee! I can’t sleep but what the heck! My skin looks better! God I’m happy!
Day 3: Why have I got the shakes and brain fog? Never mind, I’ll feel better when I’ve taken some MeB12! Hmm, that didn’t work as well as I’d hoped. But my skin is still looking great and I feel really positive!
Day 4: I feel better again today. Hurrah. I really need this MeB12 though! Wish I could sort my sleep pattern out. I seem to have insomnia, yet I’m waking up early! I really need some more sleep! It seems to be making me twitchy too. I feel a bit aminey or glutamatey and I have tinnitus!
Day 5: I still feel pretty good but I really need this MeB12, I have shakes and brain fog without it! I have had some strange tingling sensations in my fingers and toes though. Also I still have that insomnia problem and I keep having hypnic jerks! Not sure I like all the weird dreams I’ve been having. Also, why do I keep getting this strange unpleasant trapped nerve sensation in my neck all the time? I hope I’m not wrecking my myelin with this stuff. But I feel really happy-high and I like the way I have stopped putting on weight when I eat bread!
Day 6: Oops I got overconfident with food chemicals because I thought I was cured. Guess strawberries and old meat were a really bad idea. I feel absolutely horrendous.
Day 7: I feel much better again today. Hurrah. I’m cured, I knew I was! I seem to have lost the ability to spell things though!
Day 7-21: Repeat above ad infinitum.
Day 22: Why have I come down with a cold? I never get colds anymore. Hang on, wait a minute, I came down with colds the last two times I supplemented with MeB12 for a while. Maybe I should stop taking it!

Betaine (Trimethylglycine, TMG)

Day 1: I feel pretty good! This stuff is giving me a bit of insomnia though!
Day 2: I still feel good! More insomnia and hypnic jerks though!
Day 3: I don’t feel as great as I do on MeB12.
Day 4: Yep, I’m fine. This stuff seems to contribute to hypnic jerking when I take it with MeB12.
[More experiments are needed to clarify this one as I rarely take it in isolation.]

S-adenosyl-L-methionine (SAMe) and Folapro (supplement form 5MTHF)

I haven’t tested these yet because I can’t afford the $$$ US shipping expenses.


For diagrams of what I’m describing visit this site.

I suspect as I do well on 5MTHF from food sources that I have a MTHFR polymorphism and can’t use synthetic folic/folinic acids in the same way as food source folate.

I do even better on MeB12, which makes sense as it is a form of B12 that has already been methylated by 5MTHF. Unfortunately the side effects from taking MeB12 aren’t very nice, and taking MeB12, whilst it seems to raise my reaction level, still does not protect me. The MeB12 also has some awful negative effects. It seems to make me manic and is probably raising my amine levels, yet also somehow allowing me to deactivate some of those amines – just not as well as I should be able to. Perhaps this is where an MAO-A or a COMT mutation comes in to play. MeB12 can interfere with melatonin levels, and I suspect this is why it gives me insomnia and makes me come down with infections, since melatonin is important for the immune system.

On top of this, it’s as though the other forms of folic acid are being used in other metabolic processes that are making me feel worse. What I don’t understand is why they make me feel ‘amined’, which seems contradictory *if* I have a MTHFR mutation – unless there is something I am missing. Folate also interacts with the glutamatergic system but I am not clear on what it does at what point in the folate cycle. Am I putting pressure on another polymorphism like MTR (methionine synthase) or MTTR (methionine synthase reductase)? Or am I putting pressure on my detox system in some way? PABA, a folic acid precursor is not failsafe and reactive in its own right. Perhaps regular folic acid is simply being degraded and becoming reactive in some way? Or am I using artificial folic acid to make purines? I must admit to feeling ‘gouty’ on rare occasions – aching toe joints and such, but never anything serious.

As you can see I have yet to make a big impact on my food chemical intolerances, and even if I did I wouldn’t be able to ‘cure’ myself, as my methylation enzymes will always be functioning at a slower rate. I have taken very high amounts of MeB12 (1000mcg) in the past and the result has been a very extreme version of the above portrayal. Sure, I felt great for a while but I had severe hypnic jerks and almost gave myself a seizure. I actually felt better when I stopped the supplements.

Update: I’ve now done a food folate trial with a 5-MTHF supplement (FolaPro). It does the same thing to me as folic acid and folinic acid, only it’s less ‘harsh’ than folic acid, and much less ‘harsh’ than folinic acid.

Written by alienrobotgirl

29 August, 2007 at 12:31 pm

Posted in Methyl Donors

The grain trials

with 2 comments

The problem with most grains is the same as with milk – ‘opioid-like’ proteins. In wheat, rye and barley, these exist in the gliadin fraction of gluten and are called gliadomorphins. Oats do not contain gluten. People on a gluten-free diet often complain of problems with oats and attribute this to the fact that oats can be contaminated with gluten from wheat processing in the factory. Despite the paranoia, the amount of cross-contamination that occurs is negligible, and gluten-free oats can be bought widely. People still tend to cling to the gluten myth because oats are a point of controversy for coeliacs, as some appear to tolerate them well, whilst others experience a return of their symptoms – such as upset stomach and weight loss.

Oats contain an gluten-related, opioid-like protein called avenin. To complicate matters, from what I can gather (which isn’t much), avenin, like gluten, also has lectin-like activity. How gluten-like the proteins are in different strains of oats seems to vary considerably, which might explain some of the contradictory results scientists return when studying coeliac disease. If you are intolerant of oats, it might be worth trying a few different brands and varieties (remembering to take breaks between reactions) to see if you tolerate some oats better than others.

While I’ve been house renovating, I’ve done a series of on-off grain trials over the last few months.

Ever since I was a child, I’ve known I have a problem with bread. I was always fed sandwiches for my school lunches, and I often felt sick trying to eat them. I know that bread makes my stomach feel funny when I eat it – sort of like it is plugging my stomach up. It bloats me immensely and makes my belly stick out within minutes of eating it. For some time now attributing other people’s big bellies to bread eating has been an in-joke between my partner and I. I also read a celeb gossip/fashion rag called Grazia that amuses me sometimes. I think one of the editors there must be a low-carber, familiar with the effects of bread on the belly. Frequently photographs of movie stars who are suffering a bit of bloat will be accompanied by the question, “Is she pregnant, or has she just eaten a bread roll?”

Wholegrain bread has the worst effect. A dense piece of wholegrain bread is like a depth charge. From there on it is downhill… very slowly. Bread constipates me completely. Eat bread: no poo for a few days. It doesn’t matter if it is high fibre bread or low fibre bread, both are equally bad. Fruit sometimes helps to remedy this situation but the results can be variable and often results in upset stomach. This is because the balance of fructose to glucose in fruit promotes diarrhoea (particularly in children, hence lots of babies with very nasty nappies).

It doesn’t matter if the bread is sourdough, homemade slow risen, or commercial bread, they all constipate. I’d say sourdough constipates and bloats a little bit less, but even when I didn’t know about amines, long ferments didn’t solve the problem. One thing I will say though is I tried eating a lot of homemade sourdough bread last summer, and if I stuck to only one slice a day, I actually managed to lose a measly half a pound a week on a strict calorie controlled, moderate (40-70g) carbohydrate diet that also included pears. This is the first and only time I have ever lost weight whilst eating wheat.

Slightly less constipating and bloating than bread is wheat per se – in the form of breakfast cereal, flour, or wheatgerm which I eat as a porridge with milk. These are still constipating and bloating, but I seem to have a better tolerance for them. When I was younger I had to avoid bread like the plague, but I could still handle pasta and some breakfast cereals – though I preferred Rice Krispies and Cornflakes and had to be very careful with Bran Flakes and Weetabix. Annoyingly, from what I can gather, baker’s yeast has both opioid-like and lectin-like activity of its own. I am pretty sure this effect is not a propionate effect, since I make my own bread or eat organic bread.

What happens with me is that if I go from eating no grains to eating grains, I tend to get an upset stomach for 1-2 days. Then I’ll switch from that to constipation. The weird thing about the constipation is that it doesn’t really back up my system. I think I have some very efficient starch-digesting bacteria in my gut that extract every last calorie out of what I eat. I can not go for a week and know I am not particularly backed up, it just melts away out of my colon and turns into fat instead.

As soon as I stop eating the grains I get an upset stomach again, then my bowels normalise. The only time I have normal movements is when I am failsafe, grain and milk free. Food chemicals tend to upset my stomach rather than constipate. Prior to the diet, the overall effect was a kind of mild IBS; constipated most days, diarrhoea sometimes.

Eggs have absolutely no ill effect on my digestion whatsoever. I’m half inclined to think that people who say eggs constipate them are probably comparing a Bran Flakes breakfast to an eggs breakfast. If someone can testify to having done a properly controlled experiment (Bran Flakes versus Bran Flakes plus eggs) I’ll believe them.

I had completely normal BMs for the honeymoon year I had when I started low-carbing. I attribute this to not eating grains or milk, and to the way I think my methylation cycle was behaving during this low-carb, calorie deficient period.

Something I noticed a long time ago is that methylcobalamin somehow counteracts the effects of bloat/weight gain from bread. Apparently people who are trying to detox from opiates use it. So I suspect it has some anti-opiate effect. This may be another reason why my reactions to bread and dairy lessened when I went on the failsafe diet. Having come close to normalising my methylation cycle, I had a higher tolerance of these opioid-like peptides.

My reactions to wheat are more or less the same as milk, except much less subtle:

  • Cravings for more wheat, especially bread (must have it every day, any excuse to consume more)
  • Increased snacking between meals especially in the few hours after eating wheat, especially bread
  • Some drowsiness
  • Loss of motivation
  • Increased fatigue
  • Increased social withdrawal
  • Slight increased irritability
  • Increased tendency to get headaches, especially sinus/neck/shoulder
  • Bloating
  • Constipates completely, sometimes upset stomach first
  • Weight gain over a period of days (unlike milk which takes weeks)
  • Inability to lose weight
  • Slower brain

I get slightly different symptoms with oats:

  • Irritability a couple of hours after eating, does not repeat if I eat every day
  • Stimulant effect, some wakefulness and insomnia at night, does not repeat if I eat every day
  • Cravings for more oats (must have them every day, any excuse to consume more)
  • Increased satiety, feel full, don’t have to eat for hours
  • Loss of motivation
  • Increased fatigue
  • Increased social withdrawal
  • Increased tendency to get headaches, especially sinus/neck/shoulder
  • Only slight bloating
  • Upset stomach, followed by constipation
  • Weight loss during the first 2-3 days, does not continue
  • Further weight loss is inhibited

I suspect oats have a relatively small opioid effect, but also contain some sort of stimulant. Oats contain a polyphenol, avenanthramide that has bioactive, allegedly ‘heart healthy’ effects separate from the temporary cholesterol-lowering effects of oats. This polyphenol does not appear to be particularly reactive – it is large and clunky and does not have many O and OH groups sticking out from it, therefore should not be able to bind to as many sites.

Whereas these are my results from eating sushi rice:

  • Slight increased irritability after eating, does not repeat after first day
  • Stimulant effect, more wakefulness and insomnia at night, does not repeat if I eat every day
  • Zero cravings for more (no desire to eat rice ever)
  • Weight loss during the first 2-3 days, does not continue unless forced
  • No inhibition of further weight loss

I suspect that rice contains some sort of stimulant. I know that on occasions in the past when I have eaten black rice or red rice, the stuff has kept me up all night and even made me throw up, like red wine does. I wonder whether this is related to rice tannins (tannins are polyphenols and also found in red wine). Theoretically white rice should have a very low tannin content, so it’s something I can’t really explain.

So why after all this, do I not give up grains and milk permanently?

Apart from the fact that there would be very little left in my diet if I did, wheatgerm has positive effects on me as well as negative ones. It’s the richest source of betaine (trimethylglycine, TMG) in the human diet, and if you want to achieve an appropriate dose, you need to eat about 1.5 oz of wheatgerm every day, enough to make a bowl of cereal. This will also provide you with about 160mcg of natural form folate. In addition, methylcobalamin is the most abundant form of B12 in milk, and milk is the only real source of methylcobalamin in the human diet.

I tolerate vitamin forms of folic acid, TMG and methylcobalamin very badly. A dose of TMG of half the quantity of that found in a serving of wheatgerm gives me insomnia. An RDA dose of methylcobalamin does the same, and sends me on a manic high. Most forms of folic acid also send me on a manic high. The high lasts for about a week before I crash and burn in an aminey hell or have some sort of rebound reaction of the worst kind. I spent a lot of time before I was on failsafe supplementing with methylcobalamin because it made me feel better in the short term – it has some very positive effects and has pretty much cleared up my dermatitis completely on a couple of occasions. It also has some very negative side effects in the longer term – nerve tingling, trapped nerve sensations, dependency (feel awful in morning until I have taken it), insomnia, hypnic jerks, and I can’t think of one occasion that I have taken it for more than a month without coming down with a nasty cold and crashing – this is why I advise against taking methylation supplements randomly without knowing your genetic makeup.

For some unknown reason milk and wheat don’t have this effect. Perhaps due to racemers in supplements, perhaps due to the forms of vitamins hiding in foods that you can’t get in supplements. 5-methyltetrahydrofolate (5MTHF) – the only version of folic acid people with MTHFR mutations can use, and they can’t recycle it once it has been used. 5MTHF is the predominant form of folate found in foods, but it is not found in regular supplements. The only 5MTHF supplement on the market is a patented version called Folapro, which is very difficult to source in Europe. Because liver and beans/pulses are too aminey for me, wheatgerm is the only real source of 5MTHF I have. Beans/pulses tend to make me feel better for a couple of days, then feel worse as the amines build up. Ideally I ought to rotate them.

In the periods of going off and on different grains and milk, I’ve realised that I actually seem to have a higher tolerance of food chemicals when I eat wheatgerm porridge, an effect I also associate with eggs, which are the only real source of choline in the human diet. I couldn’t eat wheatgerm every day though as I would be fat as a pig if I did.

Written by alienrobotgirl

28 August, 2007 at 8:55 pm

Posted in Opioids

The problem with the low oxalate diet

with 7 comments

The yahoo group trying_low_oxalates is an experimental group promoting an experimental diet that is low in oxalates for a variety of symptoms, in particular for Autism spectrum children. The group has only been in existence since the August of 2005, and is only two years old.

I admire the trying_low_oxalates group in that the people there are focussed, systemised, and highly technical (one could definitely say ‘aspie’). The quality of the posting is much higher than the stuff on the WAPF groups and almost as high as the quality on the orthomolecular/Yasko/autism groups. Many of the people there have been through the wringer trying to cure themselves or their children and are highly familiar with orthomolecular medicine. On top of this their theories aren’t too wild and outlandish as so many aspie theories tend to be. I think that because the talk on the trying_low_oxalates group is so systemised and technical, it tends to attract aspies, rather like flies into a big sticky spider web. Whee, thinks the aspie, I like this; technical language, orthomolecular medicine, smart people like me, and lots of complicated theories!

However, being very aspie, they are also prone to demonstrating the cracked and warped logic that aspies are prone to. They don’t take account for all of their variables, and they pattern spot when there is no pattern. They don’t account for false negatives and false positives or retest what they think they have observed in the past. The difference between science and superstition is the ability to tell the difference between real patterns and false ones, and not to cling to the false ones. Apsies aren’t innately good at this, it has to be something we are trained into whether by ourselves, or by others.

On top of that, once aspies spot patterns, they will become attached to those patterns and believe whatever theory they want to believe regardless of how logical it is or how many flaws you point out. You can tell the average aspie ten times over that you must/must not do this or that to control your variables, and you will be talking to a brick wall. This is because in addition to becoming attached to underlying theories, aspies tend to have a lot of self-belief and a superiority complex and think that no one else could possibly have been through this before them and that they always know better about their bodies than anyone else.

Aspies also don’t like change. Someone, possibly Max Planck, once said “science advances, funeral by funeral.” As the entire scientific establishment seems to be run by mild aspies (‘geeks’) of various extremes, if there is something wrong with scientific progress in general, it is what is wrong with aspies. Aspies hate change. Aspies will build theory upon theory and castles in the sky to explain what does not fit in with their observations.

Back to the point. The major faults with arguments used on the low oxalate group are:

  • Oxalates are in all of the same foods that are high in salicylates, amines and glutamates with a very few exceptions.
  • Oxalate content of food varies wildly depending on how it is grown, so none of the charts are reliable and accurate and many contradict.
  • Oxalates allegedly “cause” the same set of symptoms that people experience to salicylates, amines and glutamates, yet diets low in these chemicals are well documented to resolve those symptoms.

Based on this, it is impossible to regard a low oxalate diet for autism as scientific unless you first control your variables. It is therefore impossible to determine if you have an actual problem with oxalates unless you are first fully on the failsafe diet.

Not many people on the trying_low_oxalates group are on the failsafe diet. A fair proportion of the people there don’t even know what the failsafe diet is. As a result, there is virtually no controlled evidence to support the theory that people’s symptoms are caused by oxalates, since they are still eating salicylates, amines and glutamates. In addition to this, virtually every time I see people complain that they are having a reaction to a food, that food is typically a food that is very high in salicylates, amines or glutamates. Like chocolate or fruit, or a mysterious reaction to ‘protein’. But the people on the group do not see this and are attributing their reaction to oxalates.

How do people get to the trying_low_oxalates group?

People seem to arrive there having done GFCF and having seen only minor changes in themselves or their autistic/ADHD children. At least they have got this far: some people do GFCF and continue to blame every little problem with their health on tiny invisible bits of gluten or casein in their diet (“I/my child ate gluten-free, casein-free ice cream and have had a funny reaction, therefore it must still contain gluten or casein,”) is a cry I have heard several times over, and it’s one that can lead to hysterical levels of paranoia and amusing hidden gluten-hunts when people have reacted to GFCF processed foods – containing reactive ingredients that are usually obvious to an outsider, like tartrazine, artificial flavourings like vanillin, or sulphites that are routinely added to gluten-free flours.

Other people seem to arrive there having done the Feingold diet and also seen only small changes in themselves or their children. This is because the Feingold diet is outdated. The Feingold diet was an attempt in the seventies to cut out or reduce the salicylates and additives in salicylate-sensitive individuals’ diets. At the time not much was known about the salicylates in foods, and no connection had been made to the amines and glutamates in foods. The Feingold diet does not cut out all salicylates, some foods very high in salicylates remain, and it does not cut out amines or glutamates at all. Had Dr Feingold lived, I am sure he would have updated his diet, but unfortunately he died just as the Failsafe diet was being born. I don’t know why the Feingold organisation keep promoting Feingold and keeping quiet about failsafe, it’s embarrassing and rather shameful and probably the single most damaging thing to Feingold’s legacy. The Feingold diet regularly has the critique thrown at it that “this didn’t work for my kid/this only works for a small number of children/I did the diet and it didn’t work for me.” Whether the Feingold diet helps you or not largely depends on how you perform it. If for example you drink lots of Feingold-permitted pineapple juice (high in salicylates and amines), you are not going to see any improvement in your health and it may even worsen.

So some people arrive because GFCF has failed to work for them, and they go on the low oxalate diet, which involves cutting out most high-chemical fruit, vegetables, nuts, and chocolate. And they see a dramatic improvement! Sure, they aren’t perfect. Sometimes they have bad days as well as good days. These may well be days where they have eaten some chemicals, but not knowing it they assume these bad days are a sign that the oxalates are low enough in their blood stream that they are “dumping”, that is, the oxalates are decrystalising and leeching out of their muscles and into their bloodstream. “Dumping” oxalates is rather like candida “die-off”. It’s a great way to explain otherwise unexplainable symptoms in the context of retaining a firm grip on your pet theory.

Other people arrive to the group when the Feingold diet fails to work for them, deciding that they are “not” salicylate sensitive, because they are still eating salicylates, glutamates and amines and the Feingold diet has made no difference. Then they go on the low oxalate diet, which involves cutting out a more comprehensive range of high-chemical foods than Feingold. And they too see an improvement! Which is not surprising at all.

Others still have actually done failsafe. Now we are almost approaching true science. They arrive at the low oxalate diet having never reached baseline. When I see what they are eating or putting on their skin, most of the time I am not surprised they could not reach baseline and sometimes they will reveal mistakes when quizzed. In addition to this is the sad fact that some people are just so sensitive to chemicals and have so many disruptions in their methylation cycle that they will never properly normalise on failsafe. These are the people who really need to go out and spend a lot of money on Yasko’s protocol.

Another very important thing you need to do to reach baseline is sort out any underlying infections, whether fungal or bacterial. Food chemical sensitive people are prone to infections per se. It is well known in the medical literature that certain types of people – for example those with asthma and eczema – are prone to particular types of skin/stomach/ear/nose/throat infection. Food chemicals make these people more prone to infection, but removing food chemicals does not automatically clear up the infection.

Something amazing that I see people doing too, is blaming failsafe for health problems that suddenly appear when they go on the diet.

For example, they may have previously eaten a diet that is gluten free because they have spotted a problem with grains in the past. Though failsafe is quite clear that you should not reintroduce foods that you suspect are a problem, when people go on the diet, they will suddenly decide that they can now eat gluten grains or oats again (‘yippee…’). By doing this they are not controlling their variables. People who are food chemical sensitive seem to have problems, major or minor, with opioid-like peptides, and can also be more sensitive to the lectins in beans and grains and the solanine in potatoes. It is not surprising then, that these individuals suddenly become ill in different ways when they go on the failsafe diet. I have known people to go from a GF oat-free celiac-style diet to suddenly eating almost nothing but oat bran and taking all kinds of dodgy supplements in an impatient effort to ‘cure’ themselves of ‘vitamin deficiencies’ – then suffering all kinds of symptoms of ill health as a result and turning around and blaming the failsafe diet. See what I mean about cracked aspie logic?

Others still never notice a problem with grains before they go on the diet. They can have apparently normal digestion, but a multitude of other symptoms. When they go on the failsafe diet, their symptoms change. It is perfectly normal for symptoms to change when you go on the diet. Suddenly new and different symptoms emerge when you have infractions. Old symptoms disappear and don’t come back unless you commit a more extreme infraction. A person who may not have ever noticed a problem with grains in spite of their other symptoms, suddenly discovers they get an upset stomach when they eat grains once they are failsafe. In reality, the person has always had a problem with grains, but that problem was never noted, or expressed itself differently, for example with headaches, cravings or brain fog instead of stomach upset. It may even be that the grains are being eaten differently, for example the person has changed from using sourdough bread to regular bread to reduce amines, unfortunately resulting in an increase in lectins, hard to digest long-chain starches, and gluten opioid peptides. Either way the answer is not to blame the failsafe diet, it is to reduce these extraneous factors.

If you have been through all of this, controlled your variables properly, exhausted these options and you are still not at baseline, then you can start to clarify whether you have an issue with oxalates.

By this time you are probably about to complain that you have already incidentally cut out all oxalates from your diet, so how could you possibly prove your problem is oxalate related? Well, I never said life was easy, but it is possible to vary the quantity of oxalates you eat on the failsafe diet.

  • If you have oxalate-based kidney stone symptoms, or start to pass little bits of grit in your urine, you probably have an oxalate problem.
  • If you have an officially recognised oxalate-related problem, like gout, rheumatoid arthritis, or vulvodynia, you should see an improvement and if you do see an improvement you probably have an oxalate problem.
  • Vitamin K MK4 dissolves oxalate crystals. Try yourself on small quantities over a few weeks and see what happens. Megadoses are likely to induce clotting, which may feel to you a lot like oxalate “dumping”, so it is important to be sensible and think about what you are doing and feeling. Other supplements like citrates and malates may also be helpful.
  • If you have accounted for all of the variables mentioned above, and you are eating a low-salicylate, low-oxalate diet and have not improved over the timescale of a couple of months, you probably don’t have a problem with oxalates.
  • If you have tried taking out and adding back in failsafe vegetables to your diet and this makes no difference to how you feel in general, try eating some of the very few high-oxalate, low-salicylate vegetables, versus some of the low-oxalate, low-salicylate vegetables. This should make an easily discernible difference to how you feel if oxalates are an issue. If it does not, you do not have an oxalate problem.

Written by alienrobotgirl

28 August, 2007 at 4:12 pm

The problem with chelation therapy

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Something that often happens when people realise they are food chemical sensitive and/or especially if they are on the autism spectrum, is they automatically think the problem must be connected to mercury poisoning, or another heavy metal poisoning. But rule #1 any scientist should abide by, is that correlation does not denote causality.

People don’t like to think that autism is genetic: there is a moral panic in our society regarding the health of and how we raise our children, and a second moral panic in our society regarding industrial chemicals and toxins and the harm they can do to our health. The persistent assertion in our shared popular culture is that both of these things are getting worse in our society. These two moral panics neatly bisect on the subject of autism, and the natural conclusion of anyone introduced to the subject is that, somehow, heavy metal poisoning must be causing both autism and food chemical sensitivities, because neither of these health problems could be ‘natural’, could they?

The next reaction is to go through all of the alternative health theories of autism: that autism is caused by ‘gut dysbiosis’, by ‘parasites’, by ‘the wrong type of carbohydrate’, by ‘gluten and casein’, by ‘heavy metal poisoning’, by ‘vaccinations’, or by ‘vitamin deficiencies’. A number of these problems do correlate with autism – but that doesn’t necessarily make them the cause, rather they are a feature of the same underlying condition.

People with autism thought to be low on glutathione, sulphate, and methyl donors. Sometimes they are and sometimes they aren’t. This means that they don’t detox a variety of chemicals and heavy metals from their body as well as other people. When autistic people are found to have high levels of heavy metals in their bodies (and not all are and non-autistics can have high levels of metals too), it is usually because they are not detoxing them as well as other people, not necessarily because they have been exposed to an abnormal level of a poison – be that thimerosal, MMR, amalgam fillings or any other chemicals or metals in the environment.

Heavy metal toxicity has a range of medically recognisable symptoms. If you have heavy metal toxicity and you are experiencing these symptoms, it doesn’t necessarily mean they are also causing your autism, or your food chemical sensitivities, or your fibromyalgia. It is more likely that you are experiencing all of these things due to the same underlying pathway in the body being compromised. Unfortunately these symptoms heavily overlap the symptoms food chemical sensitivity, so it is possible to become very confused and convinced that you have a problem with heavy metals when in fact you do not, or that heavy metals have caused your salicylate issue, when in fact they have not, they just coexist.

Sometimes when people suspect that they are heavy metal poisoned, they will panic and have their amalgam fillings removed. This is a very dangerous thing to do. Unless you have your amalgam fillings removed by a specialist who uses a dental dam and piped oxygen, you are liable to actually give yourself acute mercury poisoning by having the fillings removed! Amalgams release much more mercury when they are disturbed than they do when they are sat in your mouth. If, three months later, you then have a metal toxicity hair test done, you are liable to confirm your worst fears!

Next, if someone finds they have an unusually high level of heavy metals in their body, the first thing they usually do is arrange chelation therapy. Sometimes people are so convinced that heavy metals are the cause of their problems that they will do this even if their heavy metal levels are in the normal range or only very slightly raised. Any very slightly raised level is seen as confirmation of a problem that in reality may or may not actually exist.

The problem with this is that the chelation chemicals in themselves are reactive and cause unpleasant side effects:

DMSO therapy: DMSO (dimethylsulfoxide), a sulphur based compound, and the liquid version of MSM. Any individual who reacts to sulphur will usually react to DMSO. It’s known side effects include nasal congestion, shortness of breath or troubled breathing (asthma), skin rash, erythema, itchiness, scaly skin, skin thickening, hives, swelling of the face, blistering, skin pain, nausea, diarrhea, headache, garlic-like taste in mouth, garlic-like breath, garlic-like body odor, transient hemolysis, dizziness, sedation, kidney injury, light sensitivity, color vision disturbance, corneal opacities in animals and birth defects in animals.

DMSA therapy: DMSA (dimercaptosuccinic acid), is also sulphur based, containing two carboxylic acid groups and two thiols. Any individual who reacts to sulphur will usually react to DMSA. It’s side effects include diarrhea, loose stools, loss of appetite, nausea and vomiting, skin rashes, chills, fever, immune system impairment in developing foetuses, and unpleasant odour of urine, sweat and faeces.

DMPS therapy: DMPS (dimercaptopropane sulfonate) is also sulphur based. Any individual who reacts to sulphur will usually react to DMPS. It’s side effects include ‘allergic’ reactions, agitation, burning sensation of mouth, throat and eyes, chest constriction or feeling of tightness in the chest, cardiovascular reactions – dizziness, weakness, lowering of blood pressure, heart palpitations or tachycardia, nausea, vomiting, and tingling of the extremities.

Reactions usually vary in character based on dosage. At a low dosage, you might experience histamine degranulation causing rashes, or asthma, and at a high dose
you might experience vomiting and diarrhoea. All of the sulphur-based substances need to be detoxified in themselves through the sulfite oxidase (SUOX) enzyme. People who have an upregulated cystathionine beta synthase (CBS) enzyme are already putting an extra load on this pathway. These are two of the enzymes that has been flagged up by Yasko and others as having an association with autism, and of course an intolerance and reactivity towards sulphur and sulphites.

EDTA therapy: EDTA (ethylenediamine tetraacetic acid) is a chemical compound containing two amine groups and four carboxylate groups. It ‘looks’ suspiciously reactive. EDTA in itself needs detoxifying from the body. It is known to cause ‘allergic’ reactions, and reported side effects of EDTA include low blood sugar, skin irritation, diminished calcium levels, cramps and tics, headache, nausea and upset stomach, dangerously low blood pressure, kidney failure, organ damage, irregular heartbeat, seizures, and even death.

EDTA is the only chelation therapy that Dr Amy Yasko approves of, because all sulphur based chelators are known to be so problematic to the chemically sensitive. However Yasko does not seem totally clear on the importance of avoiding food chemicals. The side effects of EDTA seem just as ‘reactive’ as sulphur-based chelators, and EDTA superficially resembles gallates and amines in structure.

Sometimes so-called alternative therapists will diagnose mercury poisoning purely based on a DMPS or other challenge test, consisting of injecting a quantity of the chemical into the blood stream and watching for reactions. If the patient reacts to the drug, they are diagnosed as having been mercury poisoned.

The problem with this as you can see is that chelation drugs have some very powerful side effects. They are in and of themselves reactive and tend to affect those with food chemical problems. However, the lay person and any badly educated therapist or quack will attribute these reactions to “mercury being freed up and circulating around the body.” The ‘mercury’ whether it exists or not is blamed for the reaction caused by the chelation drugs, and the hypothesis of heavy metal poisoning is reinforced.

What I find disturbing about this situation is that people can become trapped in a spider’s web of the mind: they blame heavy metals for autism or food chemical sensitivities, they undergo chelation therapy and react to the chelators, and then blame the reactions on the removal of mercury, when in fact they are side effects and are inevitable in those who have food chemical sensitivities. Every time they undergo chelation therapy, they keep reacting, which reinforces in their mind the need to continue with the chelation therapy to ‘cure’ their problems with food chemicals. This can continue ad infinitum for year upon year, long after the heavy metals are actually gone – if they were even there in the first place.

This is why it is extremely important to test and retest your urine, blood and hair levels of heavy metals regularly, and to think about using alternative methods of detoxification.

There are less painful ways to detoxify your body of heavy metals. Most people can detoxify normal amounts of heavy metals naturally – the food chemical sensitive and those with liver/kidney problems are more of an exception. When someone who is food chemical sensitive goes on the failsafe diet, it helps to restore their normal detox systems. They often find that a wide range of chemicals and metals start to come out of their body naturally when they stop eating them on a continual basis. This process may take several weeks or months. Genetically appropriate methylation/sulphation supplements will also help to restore detox systems, as will alpha lipoic acid and selenium, sweating more, getting enough sunlight, and using a far infrared sauna.

Written by alienrobotgirl

28 August, 2007 at 3:14 pm

Posted in Quacktitioners

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Two genetic theories of autism

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If you’ve had a chance to read and digest The Times article I posted yesterday, I’d like to elaborate.

I posted this article because it is a pretty good overview of where modern mainstream medicine is at the moment. Genes aren’t specifically named in the article, but the subtext of ‘many common polymorphisms’ seems to be there.

Autism is thought to be caused by polymorphisms and mutations in various different neurotransmitter receptor/signalling/transport genes – such as the dopamine receptor genes I mentioned. In addition scientists have been looking at alterations in glutamate signalling/function as well as serotonin signalling/function.

The article lays out the two main genetic theories of autism:

  1. Autism is caused by a ‘cocktail’ of different single nucleotide polymorphisms that have different effects on the personality, and when a particular combination appears together, this produces an extreme result as in autism.
  2. Autism is caused by ‘random new mutations’ that change the function of the brain, because many new mutations have been found in autistic children.

In my opinion, it is the first theory which produces the second effect.

In other words, the ‘cocktail’ of different genes are the naturally occurring, heritable polymorphisms. These polymorphisms are not new and have existed for millions of years. Similar polymorphisms occur in most other species and are not restricted to Homo Sapiens Sapiens.

There’s little substance and much belief among some members of WAPF at the moment that autism must be caused by DNA undermethylation – that autistics are Pottenger’s children because of the bad diet of their parents, and what you need to avoid autism is lots of folate during pregancy. In fact what is suggested by the science is that only a ten percent minority of autistics have ‘random new mutations’, and these may or may not be influenced by folate consumption.

It is unclear how much epigenetics has to do with autism. Just as poor DNA methylation and other  non-nutritional factors produce spontaneous mutations, methylation also has the effect of reprogramming or turning on and off existing ‘transposon’ genes – the small percentage of junk genetic code added to our DNA by viruses. There is no evidence that autism is an epigenetic condition or not an epigenetic condition, but there is plenty of existing evidence that it is a regular genetic cocktail effect based on normal genes. We seem to have a perfectly plausible and fully working understanding of autism spectrum without adding epigenetics into the mix. However, certain named and well understood forms of autism like Rett syndrome (missing X chromosome) and Fragile X have been connected to possible undermethylation of DNA in already risky genotypes.

People with polymorphisms in their methylation genes (like MTHFR variants) are known to have higher rates of neural tube defects and spontaneous genetic mutations than the rest of the population – a problem that is not always fixable with folate, particularly when an inefficient enzyme is already working to capacity. MTHFR polymorphisms in and of themselves reach high statistical significance within autistic populations, along with COMT and GST. MAO-A has been linked to autism severity, with sex-linked differences connected to the fact that MAO-A resides on the female X chromosome so boys only have one copy. Only MTHFR is directly related to DNA methylation. Further, there is a survival advantage in MTHFR variants, it’s a classic example of ‘the selfish gene’ at work – the more and faster you mutate, the quicker you can adapt to new environments, and the faster you will outpace other members of your species. The disproportionate number of new mutations found in the genes of autistic children could well be as a result of a crunched up methylation cycle in the parents that is perfectly natural. I prefer this theory to the over-simplistic parental-blame-apportioning theory from holier-than-thou WAPF members.

Written by alienrobotgirl

28 August, 2007 at 1:56 pm

Posted in Autism Genetics