Autoimmune Thyroid Disease

An Unfortunate and Lengthy Adventure in Misdiagnosis

Archive for the ‘Failsafe Diary’ Category

Where can I find a failsafe-friendly specialist in the UK?

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You guys in Australia have NO IDEA how lucky you are. When I see you all complaining on forums about how awful it is that some doctor has prescribed you a special diet, I can’t help but laugh.

Here in the UK, there is no Royal Prince Alfred Hospital. There is no official diagnosis. There is no standard practice, no medical specialist waiting to figure out your problem, no dietitians here to help you, no food intolerance support network.

So far, I’ve done this all on my own. I haven’t spoken to a doctor, because my past experience has left me with little trust in their capacity to help with my problems.

I’m now at the point where I think I need to talk to my doctor about my food intolerance problems but I can’t, because my doctor simply wouldn’t understand and may not believe me.

If anyone knows of a specialist medical doctor in the UK with experience in food chemical intolerance, please let me know.

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Written by alienrobotgirl

19 May, 2009 at 4:29 pm

Posted in Failsafe Diary

Bread and dairy

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After much umming and ahhing I’ve finally decided that I am slighty sensitive to dairy, but not enough to matter. The sensitivity is simply that I find it quite addictive. One serving a day is fine. Two servings requires willpower. Three servings makes me crave four or five servings, and I get a pretty obsessed with finding new excuses to eat more dairy. This only seems to apply to whole dairy – milk, yoghurt, cottage cheese, mascarpone, etc. I’m fine with cream or creme fraiche. Opioids? I don’t know.

The first time I did a bread trial, I performed it with commercial white bread, and I developed tiny spots of eczema all over my body. This was kind of wild, since I’ve never before had eczema all over my body, but then I’ve never really eaten bread since being force-fed it at school. It wasn’t the propionates, because I found a soy and propionate-free brand, and the eczema continued to worsen. It carried on when I switched to oats. It was gone within a few days of me cutting out grains again.

I wondered whether I’d react differently to “proper” bread – home made, additive-free, sourdough bread. I also added extra wheat germ, and because I’m a coward, I added a bit of commercial yeast to help it rise. Sourdough contains small amounts of amines, but apparently I can tolerate the dose. It might have made me marginally more irritable. I’ve been eating it for over a month, and the only real problems have been 1. constipation, and 2. the complete inability to lose weight.

I’ve also tried commercial white bread again a few times. It seems I react to it with the same symptoms but with less of a problem than to sourdough bread.

I don’t know why I got eczema the first time, but I’m going to experiment again in the future and try to find out. Maybe it was just because I wasn’t “clear” of the dreaded plant poisons.

I’ve been eating a very liberal diet as far as carbohydrate goes (around 70 grams a day) ever since March, and that has caused a liberal amount of weight gain – going from 8st 9lbs all the way up to 9st 2lbs. I don’t really worry about my weight that much, but I’ve hit my psychological upper limit again. Now last year when I gained weight, I gained more than this – but it all went on my ass because I was eating a very low carb, high fat diet. This time with the higher carb-count, about half has gone on my belly and half on my ass, so I’m not feeling too great about my figure at the moment.

I’m going on holiday in about a month’s time, and about a month ago I decided I needed to conciously restrict what I was eating if I wanted to look good in a bikini. But I kept the carbs at between 40-70 grams per day. The problem is – carbs just lead to more carbs. Even at this still quite low amount of carbohydrate, I’ve found it totally impossible to control my hunger. If I have some carbs at lunch, I’m craving more of them 3 o’clock, even more at tea, and I also need some sort of dessert in the evening to feel satisfied.

I hate these cravings. The first time I went on Atkins, I craved breakfast cereal for three whole days. Well I’ve stopped the bread and I’ve started fat-fasting again. Oh, it hurts. There are some failsafe Scottish shortbread biscuits in my desk drawer just calling to me.

I have also desperately (and unsuccessfully) been pestering my other half about us joining a gym again. I am a bit of a freak – I am too scared to go to the gym by myself because I find sweaty men fairly intimidating.

Written by alienrobotgirl

4 July, 2006 at 1:51 pm

Posted in Failsafe Diary

Violent reaction to sulphites

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I’ve had a few off-days since I started failsafe, after eating things containing amines or salicylates.

With the exception of chocolate, amine reactions are usually pretty fast and often clear within a few hours, and are specific enough to identify (palpatations/racing heart/sleeplessness = tyramine, rashes = histamine/serotonin, hunger = serotonin, happy-high=serotonin, depression/anger = tyramine/MSG). Saying that, I’m currently experiencing a hangover histamine/salicylate reaction – some pretty nasty itchiness and urticaria – to a slice of pineapple I ate yesterday evening! Chocolate, on the other hand, produces extended bouts of depression and anger, and more chocolate cravings.

Salicylate reactions seem to produce ANY of the above symptoms, plus a whole load more (like arthritic joint-clicking, a back that cracks and hurts, bloating, PMS, ear aches) and often hang over into the next day or more. When I started the diet it took me weeks to clear salicylates out of my body and to get to the point where I can observe specific reactions to foods. Most usually salicylates cause irritability.

Smells (volatile organic compounds or VOCs) also cause irritability and urticaria, in fact, there are certain shops with chemical smells that I know if I go inside, I can guarantee I’ll come out feeling annoyed about everything. Driving and inhaling exhaust fumes also makes me irritable. You inhale more exhaust fumes driving in a car than you do as a pedestrian. The VOC reactions are usually fairly short-lived (which is probably dose-related) and I’ll have cleared them inside a couple of hours.

Sue Dengate says there’s pretty much no point in testing additives if you’re sensitive to amines and salicylates, because in all probability you’ll react to them. How much I’d react to additives now I’m “clean”, I didn’t know until I tried them.

Last weekend we went out for a meal as it was a friend’s birthday. I decided I wasn’t going to be a food-fascist about eating any additives (I don’t punish myself for eating bad stuff – my body does that for me). I had half a glass of champagne, a couple of olives, some prawns and some smoked fish, and everything else was failsafe. Now, I’ve tried smoked fish before and not reacted particularly severely. The thing that was different about these foods was that most of them contained the dreaded sulphite preservatives. Champagne, probably the olives, the prawns, and possibly the smoked fish.

In “Fed Up With Asthma”, Sue Dengate describes how sulphite reactions often tend to be delayed until the next day, and how they affect the majority of asthmatics quite violently.

Two or three hours after eating we headed back to the hotel. On the way back I started to have problems breathing. I stopped being able to breathe through my nose and had to breathe through my mouth, and my chest got very tight. I had asthma as a child. I haven’t had it for years, with the exception of a period three or four years ago when I regularly went swimming and inhaled lots of nasty chloramines – something I actually discovered at the time and stopped swimming – and stopped having a problem – as a result. I didn’t have a proper asthma attack, though I coughed a bit and had difficulty sleeping.

Breathing through your mouth instead of your nose makes asthma worse because air inhaled through the nose is mixed with nitric oxide (a vasodilator) before it enters the lungs, and a nitric oxide deficiency leads to further hypertension and constriction of the airways (this is how the underdeveloped facial structures and mouth-breathing that WAPF are always lecturing about is linked to the surge in asthma in recent times). I believe the only reason I eventually got to sleep was because I clamped my mouth shut and forced myself to breathe through my nose until I calmed down.

The next day I can only describe my face as beetroot-coloured. Red, red, red. Before I went on failsafe I was quite worried I was developing rosacea (to go with my dermatitis), because there were so many times when my face just seemed to be really flushed, hot, and sensitive, and I was permanently a little bit pink. My face hasn’t looked like this since I started the diet. The other amazing thing was that my face had been totally clear of any sign of dermatitis/eczema/rash the night before, and when I woke up I had a defined pink patch and a couple of big acne-like papules. The doctor has prescribed me something effective for the dermatitis, but I’ve noticed whenever I eat something off-diet, it’s like two steps back again. I can delude myself that I’m “cured” until I eat something off-diet. My skin responds more to diet than to antibiotics. Anyway, I was quite excited by the red face because I have a friend who has rosacea who I wanted to show my face to, but we didn’t get to meet up with him.

My partner, who “does not” have food sensitivities – gets cracking knee joints when he eats spicy foods high in salicylates, and I’ve noticed before that he gets irritable the day after having sulphites in beer or other foods. Well, we were both irritable that morning. I had urticaria too, and I felt like I had a hangover.

I have a theory about hangovers. You see, I get “curry hangovers”. Most people drink when they have a curry, but being a supertaster, I don’t like the taste of alcohol, so I don’t drink. But I get a hangover. Wine gives me terrible hangovers, even though I never drink enough to get drunk. I’m basically reacting to the food chemicals and the sulphites. I know some people who claim that organic wine and beer does not give them a hangover in the same way that the non-organic variety does, and blame hangovers on unspecified “chemicals”. I wonder how many people who get hangovers blame the alcohol when they should actually be blaming the MSG, the spices, or the sulphite additives?

Anyway, I felt horrendous. I magically gained two pounds (I swear on these occasions I must just suck fat cells out of the air because when I gain it it doesn’t come off again). My brain wouldn’t work, I was really foggy, irritable, and confused. I kept getting headaches. The last time I felt this bad was about six months ago when I went out to a local pub and ate a half pint pot of prawns. In other words, the last time I had a big dose of sulphites.

It took me a week to get over it. A WEEK! Screw the “I’m not going to be a food-fascist” approach to additives. It’s not worth it. Give me amines and salicylates any day.

Written by alienrobotgirl

4 July, 2006 at 12:20 pm

Posted in Failsafe Diary

Organic dilemma

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We’re accidentally moving away from organic food at the moment. I’ve been in half a mind to cancel our organic veg box. Now the summer vegetables are upon us, things are getting difficult. There was literally nothing I could eat in the box last week. We’ve also been going to the Chatsworth farm shop more, because unlike our local organic farm (and the local supermarket), they don’t vacuum pack their meat, and also have a much higher turnover. I’ve actually really noticed the difference. I think I was so used to eating a certain level of amines all the time, that I didn’t realise until I stopped eating them that there was further improvement to be made.

I think it’s almost a semi-legal requirement for organic meat producers to sell their meat vacuum packed, which is very frustrating as it becomes impossible to tell the age of the meat. We’ve been trying to figure out how to get around this, and we might end up buying half a lamb for the freezer, with special instructions not to vac pack. We might be able to get more fat that way too, as the lady who runs the organic farm shop has a tendency to be overzealous about cutting it off! I suppose all butchers have a tendency to do that nowadays: talk about the tyranny of the masses!

Written by alienrobotgirl

31 May, 2006 at 11:24 am

Posted in Failsafe Diary

A review of recent observations

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I’ve noticed a few things recently, like:

  • I’ve had definite reactions to pork (including colourful nightmares), which I thought I was okay with before.
  • I’ve been slipping up on salicylates. I don’t react to amines nearly as badly as long as I avoid salicylates. If I have salicylates in my system, I react to almost everything.
  • I seem to have skin reactions to sulphates as well as sulphites, in fact, anything sulphurous including MSM. I also have breathing reactions: sulphites are a main trigger for asthma, but it seems that any kind of sulphur causes me strange breathing symptoms.
  • Most of the vitamins required for the correction of the methylation cycle also happen to increase serotonin, dopamine, and histamine.
  • I react to one cup of green tea with violent arthritis pains in my knees and ankles, and back pain and worsened skin, plus increased hypnic jerks.
  • I react to five stalks of asparagus with back pain and worsened skin.
  • I seem to be okay on lecithin (choline, inositol), but I can’t say yet.
  • I may not be able to handle grains every day (body eczema), but that doesn’t mean I can’t eat it a couple of times a week.
  • I seem to do better if I keep my dairy down to three or less servings per day.

It seems like it’s not worth even bothering with the full food trials. I’m incredibly sensitive to anything not on the positive list. I’ll try a few more of the low-salicylate foods before I give up completely.

I’m just going to take methylcobalamin for my CNS symptoms and that’s about it. Everything else I’ve been trying makes my skin symptoms worse. I think even methylcobalamin may not be safe. This is a perfect catch 22.

As for my eczema, I’ve never quite understood it. My instinct has always been that it’s dermatitis and there is a bacteria/yeast/fungus involved, but not one single anti-bacterial/yeast/fungus cream has ever worked on my skin, and clearly I’ve demonstrated that the skin heals if I stay off the food chemicals. But it’s a really frustrating wait for it to heal itself after I have a flare-up. When I stay failsafe, I stop producing an excess of sebum and that might be the determining factor.

Written by alienrobotgirl

7 May, 2006 at 4:30 pm

Posted in Failsafe Diary

Lanolin might work

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Messageboards are so bad for me. I have to stop reading them and posting replies.

I finally had a “Fed Up” book arrive the other day. At last. They’re like gold dust. Or rocking horse droppings. Amazon decided they couldn’t get them after all. I’ve had to order a couple second hand direct from Australia.

Yep, decaf coffee bothers me. I had some more yesterday and before I’d even finished it the inside of my nose was inflamed. Thanks to Annabelle I now know why – apparently my fine organic swiss water decaf filter coffee has more salicylates than the harsh chemically decaffeinated instant stuff. No more coffee for me. I’m now limited to warm milk when I want something hot. I can see myself in Nonna’s now: could I have a latte without the coffee in it?

I read a bit of hearsay in Karen DeFelice’s book that TMG might actually make autism worse. This fits the theory that overdosing one part of the cycle can cause a block in another part. In this case (potentially) the methyl donors remethylating homocysteine and the presence of glycine dragging cysteine into glutathione formation, could cause a lack of sulphate to be available for use in phenol detoxification. It’s a very tricky balance. Depending on one’s symptoms and one’s particular reactions, this could be a make or break situation with the supplements.

I’ve got to clean up my diet before I can continue with the vitamin experiments. I’ve transgressed every day since my partner got back from India. I was irritable yesterday and the day before. I’ve been running on about 60-70% most days. I haven’t had any really bad days, but my head is full of “noise” at the moment.

I’m stopping all the vitamins as of tomorrow until I clean things up. I still have to get my supplements right, but I can’t do it while I’m still reacting to foods and smells. My face hasn’t been so great the last week or two, but I can’t separate that from all the transgressions. Probably everyone needs different amounts of different supplements, and I’ve been getting very big doses of B12 and B6 because I can’t get them smaller!

Vaseline: I have been using this in tiny amounts on my face because someone mentioned it on the Fed Up site as a lip moisturiser. However I’m unhappy with the smell (strong, unpleasant) and the potential chemistry of it. As a mineral oil it may contain benzenes. I think I am going to swap over to pure glycerin. I’m also going to get hold of some pure lanolin from Soap Kitchen and try that. When I was in France I used to use olive oil on my face. I suppose butter is also an option. Before moisturisers were invented, people used to use goose grease. Theoretically the oils of low salicylate plants should work. Wheatgerm oil? Mango butter?

Written by alienrobotgirl

18 April, 2006 at 10:26 am

Posted in Failsafe Diary

Calcium magnesium balance and epsom salts

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I’m a bit behind on my record of what I’ve eaten. No big deal. I’ve had a couple of transgressions in the last couple of days (cranberry juice one day, half a mango the next). Joan Breakey allows mango in her initial trial diet, but says you should cut it out if you’re extra food sensitive. Today I feel a bit tired, but better after resorting to the bicarb. I’ve also been eating a few red potatoes here and there, which aren’t as clean as white.

I learned a valuable lesson the other day. I’ve been all twitchy and haven’t been eating recently. I have a history of panic attacks late at night. They happen during times of extreme stress or anxiety. There are some things that trigger them. Hypoglycaemia, drinking, caffeine, amines/glutamates etc. If I feel suffocated or I am not getting enough oxygen, it usually leads to panic. They’re also triggered by mineral imbalances. I remember being in a complete state on a couple of previous occasions after either supplementing with magnesium, or suffering mineral loss during the flu. One of my rules was: don’t supplement with calcium or magnesium in isolation because it does bad things. In fact, before I knew about food chemicals, I worked out a connection between feeling downright awful and taking a bath in bath salts or dead sea salts, and I stopped doing it altogether.

Why do I always forget the important stuff? It’s taken me almost a week to catch on to the fact that I’ve been having palpitations, anxiety and twitching ever since I started taking epsom salts and increasing methyl donors last Friday!

I gave my epileptic friend some epsom salts and methylation supplements and then he complained of having a tight chest, pounding heart, and “feeling twitchy,” which really made me freak out. When I eventually realised the connection, I took a hefty dose of calcium, and within an hour my pounding heart had gone away and I got to sleep really easily. It’s funny, because so far every time one of these attacks has occurred, my final resort has been a glass of warm milk, which has worked every time.

Epsom salts (MgSO4) are about 16.6% magnesium and the rest is the sulphate (SO4) molecule, which is only different from sulphite (SO3) by one oxygen atom. I was supplementing by about half a teaspoon a day. The body contains a total of around 25 grams of magnesium. The RDA for magnesium is about 320mg, and I was probably getting more. I suspect epsom salts also contain sulphites as well as sulphate, and sulphites usually give me asthma. I think I have probably thrown my blood-mineral balance out of whack.

When you throw out the mineral balance of your blood, your body compensates by leaching minerals from your bone. Calcium is leached, but this takes time. One clue to a mineral imbalance is painful teeth or a sign of new decay. I have a tiny cavity in one of my back teeth that I’ve been fighting with my high-dairy diet – it goes through bouts of getting better and worse. During the last week, I’ve noticed that it’s started to hurt again.

Calcium and magnesium are regulators and are required in the correct ratios of 2:1 calcium:magnesium. Above around 350mg people can start to experience the effects of excess magnesium, which include relaxation, hypothyroidism, slowing down of the body’s systems, shallow, slow breathing, lethargy, and a weird sleepy/alert state.

I haven’t been supplementing any calcium. I’ve found that I can’t supplement calcium for any length of time because soon enough it starts to hurt the site of my former DVT, and the symptoms are calf swelling and venous pain all up my leg. Calcium is involved in the clotting process. I’m actually perfectly fine even getting my RDA from milk, it seems to be supplementation in isolation from some essential factor (not vitamin A or D but perhaps the Price factor or another factor, maybe vitamin K*) that causes this.

On top of this I haven’t been eating properly as I’ve been very stressed about my epileptic friend. When you don’t eat properly, you increase your GABA levels. GABA is not inflammatory, but it is an amine and one of its effects is to depress respiration and cause shallow breathing, sometimes dangerously so. In large doses it causes anxiety, drowsiness and tingling in the extremities. It is also involved in the production of stomach acid.

I’ve experienced a loss of appetite, without the benefits of any weight loss. I’ve experienced drowsiness and have napped a few times in the day to catch up on what has been missed at night. I’ve experienced some very shallow breathing and feeling like I can’t get enough oxygen. Shallow breathing leads to a lack of oxygen, at which point the body starts to crank up the adrenalin and go into panic mode. Hypnic jerks occur when the body misinterprets extreme relaxation for falling or impending mortality and tries to right itself. No wonder I couldn’t sleep, I was anxious enough in the first place!

Speaking of my epileptic friend, he seems to be doing quite well so far.

* LOL. I wrote this a year before WAPF published their hypothesis that vitamin K is activator X.

Written by alienrobotgirl

15 April, 2006 at 2:05 pm

Posted in Failsafe Diary