And I always prided myself on being a tolerant person…

You’ve seen this post coming, haven’t you? πŸ˜›

Before I say anything else I want to tell you something about me. I feel like I am, fundamentally, a scientist. I am deeply suspicious of anything remotely hippy, self help related, or alternative (I have reasons for this, but I won’t get into them in this post, it’s a long story!). When I was studying occupational therapy and we covered mental health topics I’d be the one arguing for genetic causes, medication as treatment and research studies, while another very out spoken guy on our course argued right back about Freud and Bowlby (cue me: but they are hopelessly outdated, not backed by research and Freud was a sex obsessed cocaine addict! *rantrant*). So, it’s an endless source of frustration to me that I have all these blasted food intolerances. Sensible, logical people do not have food intolerances. Actresses and neurotic people have food intolerances. Yes? I mean, food allergies are different, they can kill people. Lactose intolerance is at least medically recognised and well researched, and coeliac disease isn’t an allergy at all, it’s an autoimmune disease. But I don’t have anaphylactic responses to foods, lactose free milk makes me just as sick as regular milk, and I’ve tested negative for coeliac disease twice.

The public perception of intolerances seems to be that it’s all in someones head. It’s not that serious. In fact, they probably don’t exist at all, it’s mostly people imagining responses to things because they want to get skinny by not eating wheat. But that’s just not true.

This last week I have been feeling awful. My digestive system was playing up, my anxiety was a lot worse, my blood sugar was all over the place and a couple of days ago I started feeling really depressed again, in a way I haven’t experienced for eighteen months. I started having thoughts of suicide and self harm again, thinking that life was pointless, the eating disordered thoughts got louder and more frequent, and my startle response went completely haywire. I was having palpitations, my tics increased (have I ever mentioned that I was diagnosed with a tic disorder a couple of years back?), I started going dizzy, I couldn’t sleep. I just felt all wrong – confused, lethargic and exhausted. But having suddenly realised that if my pea protein powder was made from split peas I was probably intolerant to it, seeing as I am to lentils, and so not eating it yesterday or today – I feel 95% better already. This morning I woke up feeling much more optimistic, the eating disorder hasn’t given me any hassle all day, the idea of hurting myself feels wrong again, the palpitations and tics have calmed down and the dog barking doesn’t make me want to hide behind the sofa anymore. This has come as just as a bit of a shock. I haven’t eaten anything that I’m really intolerant to for eighteen months, and it was a surprise to notice how my psychiatric and neurological symptoms got so much worse and then so much better over the course of a few days. I wasn’t expecting that at all.

According to my parents, I screamed for the first ten months of my life, almost constantly. I barely slept, and so neither did my parents. They didn’t realise at the time that I had a milk allergy. I showed atypical symptoms – constipation instead of diarrhoea, for example – and so it was a good few years later that anyone realised. Milk didn’t make me throw up or stop breathing though, so no one thought to cut it out of my diet. These early problems probably contributed to my difficulties today. I screamed for ten months solid because I was in pain, and being in pain for the first ten months of your life will quite successfully hardwire anxiety and hypersensitivity into your brain. Continuing to consume cow’s milk despite the allergy and the constant stress of being in pain probably also did some damage to my digestive system.

I developed the first symptoms of anxiety disorders when I was four or five, and obsessions and tics a couple of years later. When I was nine I started getting palpitations and by the age of 11 I was seriously depressed and considering suicide. The depression was a response to being bullied, but the anxiety was unexplained. I wonder now if it was linked to my change of diet when I was nine. It was then that I decided to become vegetarian. I didn’t have the most balanced veggie diet – no one else in my family was vegetarian so we were shooting in the dark rather – and I was recently diagnosed with a B vitamin deficiency. Symptoms of B12 deficiency include depression and fatigue. Obviously the bullying triggered the depression, but why didn’t I tell anyone? Why did I internalise everything that was said to me and become convinced that it was my fault? Why did I become so incredibly mentally unstable so quickly? By the age of 13 I was actually experiencing psychotic symptoms as well. My depression and anxiety don’t respond to medication (in fact it makes me even worse) and I’ve seen countless therapists over the last eight years, but nothing seemed to help.

I know I’ve already shared the story of how my intolerances were finally diagnosed. I was hospitalised in early 2007 because I was suicidal, and during the next six months I was taken off of citalopram and put on effexor; taken off effexor and put on moclobemide, taken off moclobemide, taken off that and given sodium valproate, that made me physically unwell so then carbemazepine was prescribed, and all the time I was also taking diazepam, beta blockers and quetiapine. The citalopram failed to stop and maybe contributed to the suicidally low mood; the effexor made me extremely suicidal and then manic; the moclobemide just plain didn’t work; the valproate and carbemazepine made me sick and dizzy; beta blockers sent my blood pressure crashing; diazepam had me suffering from sleep paralysis and even on the very lowest dose of quetiapine I slept for 12 hours a day. Finally my mood stabilised, through some miracle, and I’ve not taken any psychiatric medications for eighteen months now. But then my digestive system shut down. I experienced a whole range of bizarre and unexplainable digestive and neurological symptoms for about six months, until I was very underweight, malnourished, suicidal again and exhausted because I couldn’t eat or sleep, I was so sick and dizzy. I was so desperate I forked out for a private food intolerance test, and it turned out that I was intolerant to milk (I have both an allergy and an intolerance to milk; I can’t digest lactose but the big problem is the milk protein, casein, which makes me sick and wheezy), wheat, yeast, lentils, hazelnuts and millet. In the first few months I couldn’t eat soya, gluten, onions, garlic or chillies either. Once I got my results I cut out all of those foods immediately.

Something really odd has happened since then. Although the relapse into anorexia was triggered by the accidental weight loss, my other mental health problems have gotten an awful lot better. I am calmer, I am more optimistic, the physical symptoms of depression like the extreme exhaustion have disappeared, my tics have lessened dramatically, I sleep better, I am nowhere near as impulsive or self destructive, I stopped self harming completely. Aside from all of that, I’ve stopped suffering from unexplained bouts of nausea – I used to be woken up in the middle of the night feeling like I was going to throw up at least a couple of times a month, and far more frequently as a young teenager. From the age of 9-13 I felt sick almost constantly. My palpitations have virtually stopped as well, and I’d had them since I was nine too. I didn’t even realise until I started ticcing and feeling like my heart was trying to jump out of my chest this week.

This is the explanation I’ve been given for the development of multiple intolerances: somehow, through stress, caffeine, alcohol, eating disorders, whatever, the lining of your digestive system becomes damaged. Large food molecules which should be broken down further before being absorbed escape through these holes into your blood stream. They are recognised as foreign bodies by your immune system and attacked. From then on, you have an immune response whenever you eat certain foods. Fungal infections can also set up shop in your poor damaged digestive system, like they did in mine. I was quite lucky, my immune system was shot to pieces so my fungal infection spread throughout my whole body, my doctor could see that my tongue had gone a nice shade of brown and prescribed me antifungals, but many people have them lurking in their intestines without realising. Fungal infections make you bloated, constantly hungry and crampy, nauseated, exhausted and generally feeling like you’ve been poisoned. And finally, I didn’t know this until my nutritional therapist told me a few weeks ago (and I did double check this) – most of your bodys neurotransmitters, including serotonin, are manufactured in your gut. Why don’t psychiatrists tell people this?! So if your digestive system isn’t working properly then depression and anxiety are actually quite logical complications.

I don’t know why mainstream medicine finds all of this so hard to accept. I suppose I would, if I hadn’t had it happen to me, but it still infuriates me that doctors will prescribe antidepressants which are known to carry the risk of increased self harm or suicidal thoughts before considering suggesting B vitamin supplements or a casein/gluten free diet. The casein and gluten free diet even has research backing it up – it has helped many children with ADHD, autism, OCD and other behavioural disorders and get this: some schizophrenics have experienced a significant reduction of symptoms on cutting out milk and gluten. But no. Even a lot of medications contain milk or wheat – I remember, two years ago, reading the ingredients on the effexor packet and seeing milk protein listed. That really couldn’t have helped. In eating disorder units patients with damaged digestive systems and weakened immune systems are made to drink cow’s milk by the half pint as standard, for the calcium and phosphate, but there is evidence to suggest that calcium from milk isn’t well absorbed and might even contribute to osteoporosis, and it’s certainly not doing anyone’s digestive system any good. It’s not a natural food for humans.

It was really hard giving up milk, wheat and yeast. It would have been easier if I had only been intolerant to two of them. If I could still eat yeast I could have at least had gluten free bread. But I seem to be extremely intolerant to yeast. I can’t take B vitamins which have been extracted from yeast, and so enriched dairy-free milks and spreads and vegan cereals are off limits. I can’t have anything with vinegar, alcohol or malt in it, because they are all fermented. Fruit skins and dried fruits have natural yeasts growing on them, so I haven’t eaten grapes or raisins for eighteen months and I have to peel other fruits and veg. Sourdough bread is OK for some people with yeast intolerances since the yeast is naturally occuring, but it doesn’t agree with me at all. Many gluten free products use wheat which has had the gluten extracted, so I even have to read the labels on them. A staple source of protein for many vegans is lentils, so a lot of potentially edible ready meals and veggie burgers have been ruined for me by that one.

It’s gotten easier though. I don’t miss the taste of milk at all – I never really liked milk on it’s own, and although most of my binge foods as a teenager contained dairy products and wheat (milk chocolate, porridge with milk, bagels with butter, custard, ice cream, cakes) I found that after a month without them I didn’t crave them at all anymore. There is a theory that if you crave or binge on particular types of food there’s a good chance that you have an intolerance to them, because when you eat them your body releases adrenaline and endorphins as part of the immune response, and you get hooked on your own opiates. I’m pretty sure that this was true for me, because I don’t miss them at all anymore. The main problem wasn’t missing certain foods, it was working out which foods contained them in the first place. Milk protein and lactose get into EVERYTHING, and yeast extract is a very common flavour enhancer in vegan foods.

So, I have to make most of my food from scratch. So I’m always going to have to read the labels on everything I do risk buying from shops. So, even though I’ve avoided lentils entirely for eighteen months, this week proves that the intolerance hasn’t gone away – and this doesn’t bode well for reintroducing other eliminated foods any time soon. I can’t drink alcohol. I still have that bloody yeast infection hanging around in my digestive system. I can’t eat out unless I’ve grilled the restaurant staff on whether their sauces contain yeast extract or vinegar, or their chips were coated in milk and wheat batter (seriously, McDonalds does this), or their baked beans contain wheat flour, or…etc. I still think I’m better off having been forced to eliminate all those things from my diet. The intolerances might have contributed to unexplainable, uncomfortable, embarrassing and painful illnesses for the rest of my life without my realising it if my body hadn’t decided to go into meltdown. And my depression, anxiety and neurological problems have improved significantly since changing my diet. Now, really, all I have to do is come to terms with the fact that I – whilst loving everything logical and scientific – have such a terribly hippy-ish and ‘alternative’ problem πŸ˜›

Three good things about today:
1. The obvious: not waking up horribly depressed again. Thank God for that.
2. I made some more coconut flour brownies earlier, and they were far more successful than the first lot! I am getting closer to the perfect brownie, I know it πŸ˜›
3. My competition – if anyone still wants to enter, comment on the postΒ in the next…fourteen hours (which is when I will be online next!), and I’ll pick two winners tomorrow! I’m rather excited πŸ™‚

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9 responses to “And I always prided myself on being a tolerant person…

  1. For very obvious reasons, this post is very meaningful to me! I hate that there is so much stigma about food intolerance. When my doctor suggested celiac disease to me, my husband said, “Just what you need — more food issues.” I hate that word — “issues.” Like you said, I’m not some neurotic actress who is particular because of some belief that eating certain foods will put her closer to God. It’s just that I feel bad when I eat some things, sometimes. I have a lot of your symptoms. The main thing that sent me to the doctor was the nausea. Where the hell did that come from? Anyway, it’s interesting to see the relationship to mental health issues. Now I’m starting to wonder about the whole chicken/egg scenario. Maybe I had food sensitivities that I ignored. I lost weight because I simply lost my appetite. That triggered this anorexia nightmare. Which triggered more intolerances. UGH. It’s very frustrating. I really admire your perseverance. I know you don’t FEEL too great lately. You’re allowed to have bouts of depression, like all humans. But, you have come a long way, and you are obviously trying to solve your digestive problems, be proactve, take your life in your own hands. Just yesterday I was thinking how I’d want to crawl into a hole if I found out I have celiac disease… I’d be so overwhelmed at the notion of “making it work” in a healthy way for me. But, I thought of you. You have done so much for yourself to find foods that are ok. I know it’s been an agonizing process, but you’re still doing it. That’s all you can do, right?

  2. I’m glad to hear you are feeling a bit better today! This was a really interesting post for me to read- I don’t have intolerances as far as I know, but when I was 18 it was thought I may have a gluten intolerance so I cut out a bunch of different things. The transformation was nothing short of miraculous- I came off all my medications, felt happy/calm and had the only period since this began where I can think, “THAT is what recovery would be for me”. It was a hassle though finding stuff to eat so once I was better physically, i reintroduced foods again (and had the worst relapse of my life). I’ve never considered a connection before?..I am sorry this is all going on for you- I agree with you on intolerances being misunderstood. There is so much in papers/magazines basically saying that only allergies exist and intolerances are generally imagined. I’ve never doubted whether or not they exist and can only imagine how hard your multitude of allergies is to manage on a day to day basis, even without any eating issues.As for the milk thing, I didn’t click on the link. I know there is research about effects of dairy, but I have lost count of the number of patients I have met on eating disorder units on high-milk diets and you are the first person who has had major problems with milk tolerance. I have pretty severe osteoporosis and friends younger than me who are now hunchbacked. I wouldn’t tout avoiding dairy products without testing being done because there is also significant research that dairy is good for bones. Sorry to disagree with you on your own blog- feel free to deleter :/

  3. πŸ™‚ You know I already agree with all you’ve written right???Sometimes I will say “food allergy” because a type of food actually makes me vomit fairly quickly, I figure that is quite a severe enough reaction even though technically its not…its just way easier to explain to people!Did you know that 60% of people are lactose intolerant! Therefore it is STRANGE to be lactose tolerant!!! Random hey!I didn’t know about the opiate deal. That’s very very interesting indeed. I’m definitely more interested in that, particularly cause well food makes me so very sick (with heaps of increased pain) and usually when I crave food, I’m distinctly lacking something in my diet. I wonder though if the reason I can eat it then but not normally is due to the release of endorphins? Interesting!!!Right, you be the Dietician/Nutritionist and I’ll be the Doctor. Anyone want to put their hand up for the psychologist? Then we have a pretty good eating disorders treatment team I think!!!Seriously though, I get sooo infuriated with so many doctors. Until last week I was working in a psych hospital and at one of the meetings they were talking about this lady who has become very depressed after experiencing chronic pain in her mouth for a number of years after a bad dental treatment. They just wanted to keep changing the antidepressants (and not to treat pain) to treat her depression! I just wanted to yell out, “WHY DON’T YOU TREAT HER PAIN?!?!? THEN see how her depression is going!” I mean far out people, sometimes things are so obvious.Also having 1.5 Syndromes for a very long time (18 years) I totally understand the whole doctor not believing “intolerances” and wishy washy reactions etc. *sigh* it’s very infuriating. At the end of the day we all just have to look after ourselves the best we can and go with our gut (no pun intended :p).Good post as always Miss Katie Love Telly xox

  4. Glad you feel better! I am only lactose intolerant, but I can understand how annoying it is to watch out for everything you’re about to eat. You know so much about nutrition! πŸ™‚

  5. helloooo :)loving this post. taught me a few things I didn’t know, anyway! despite society/doctors having stupid reactions, I think it’s amazing that you’ve managed to untangle so many things in your life history based on the intolerances and how they’ve affected you. also, omgguesswhat…I have a blog now!check this – http://angelicdummy.blogspot.com/I feel my first post is particularly relevant to your issues with milk. I am beginning to be a very strong supporter of that cause ;)xx

  6. People are so rude about food allergies/intolerances…I don’t think they’re taken seriously enough, and that is why there is a sort of stigma attached. It’s a very real medical condition, hippy-dippy cures or not! I’m with you on not embracing non-scientific cures/treatments…which actually makes recovery from ED a lot harder! I wish I could just “go along with” certain philosophies or methods, letting go a bit would probably help! Placebo effect, no?

  7. Wow, what a post! I totally agree with you that food intolerances are REAL. I am sorry that your digestive processes have been so uncomfortable lately. I’m so glad that you’re feeling calmer, despite your long history of anxiety. That’s so great to hear. Gives me lots of hope. thanks for such an open and honest post, feel better love. Stay strong xoxoxo

  8. Hey sweets~I am so glad you figured out what was throwing your body out of whack and are now feeling better. I never doubted that food intolerances are real, but wow! I have learned so uch in the post as to how many unsuspecting foods contain yeast of milk proteins. And I have also learned how the digestive system can affect your odd and how what you put in your body affects you in so many ways I had not realized. You have really been through a journey and I think you have come out stronger in the end. So glad to hear you are doing better and take good care!

  9. hi there, I recently came across your blog from TWIM awards, and I can see why you won! you are a very good writer, and a very insightful and inspiring person. I realise this post is way old now, but reading it made me wonder – have you ever tried 5htp supplements? I have recurrent depression and anxiety, and like you I can’t tolerate antidepressants (make me manic) or beta blockers (low blood pressure). but taking 5htp really helped me.

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