It’s all relative


I’ve spent this weekend with a very dear friend of mine, who has MS. She avoids eating wheat for her own reasons, as part of an overall plan to maxmise her health and support her body. Her symptoms have progressed very slowly over the 13 or 14 years I have known her, but yesterday was the first time that we have had to take a wheelchair on a day out, to make things easier for her as we explored a lovely Cotswold market town near our home. Throughout the weekend (and indeed, always) she has been unfailingly cheerful and positive: she delights in every aspect of of life, her family and friends, and has just returned from a holiday in France to celebrate her 25th wedding anniversary.

Discussing her symptoms with her, and hearing about her latest battles with constant bladder infections and disabled parking spaces, I was overcome with gratitude for my relatively mild health problems. I also felt guilty about sometimes resenting the fact that I can’t eat grains, and so miss out on the doughnuts at work or whatever. What a small price to pay, to feel well most of the time: to be able to walk freely, practice yoga, swim with my children, run up and down stairs, and dance around the kitchen. It’s so easy to get locked into your own world, and judge things by a very narrow range of criteria, especially in a society which over-values youth, good looks and money. It’s good to be reminded that the default attitude in most situations should be “gratitude”, and I don’t have to look far to find things to be grateful for – my husband, my children, my safe and comfortable home, my extended family and friends, my relative financial security, health, five senses, my (again, relative!) mental stability, intelligence, ability to express myself, to love and be loved…….all things I take for granted most days, all worth their own weight in gold.

Losing weight


So, you’d think that being unable to eat any grains or pulses whatsoever, I’d have no trouble at all controlling my weight, right? So wrong! I absolutely love food, and it didn’t take long before the restrictions on what could eat became less of a problem, and more of a challenge. I started to think about the new dishes I could create, and dropped many of the healthy eating habits I’d already established (hey, I don’t eat grains, so I can leave the skin on my chicken and eat full-fat butter, a la Atkins, but without the restrictions on sugar!). Whenever I felt hard done-by about my health situation, I’d console myself with chocolate or ice-cream. I also have a real problem with portion sizes: my eyes are defintely bigger than my stomach, except that I’ve never let a full stomach get in the way of a good meal. I used to joke that the best way to deal with feeling full was to “push on through it”!

Let’s be clear, I was never obese. I was about one and a half stone (9 kg) heavier that I was before my second pregnancy, when I was a healthy and happy weight. I knew I was heavier than I should be, but for many months I simply didn’t have the energy to think about weight loss, on top of working out how to feel well again.

Then about a year ago, I had a visit from a dear friend from Australia. She has four kids and a very busy life, but she told me that she had made a decision that (despite her own passion for food and cooking) she needed to take control of her weight before she got any older (she is 44 like me). She had been to Weight Watchers, and now weighed 9 kg. less. She looked and felt great, and I felt really inspired. After she left I bought the latest Weight Watchers materials, and set out adapting the new points programme to my diet.

The biggest problem I faced was the sudden, sometimes inexplicable flucutations in my weight due to water retention. It seems that my body retains water whenever my immune system is over-activated, so eating bread or cake can increase my weight by 3 or 4 pounds in 24 hours. But as I weighed myself regularly while excluding grains and pulses, I noticed that other events also triggered fluid retention: at the beginning of a cold or flu, during harvest season (when they are cutting grains in the fields around our village), even when we had the school rabbit for a week (pet allergy). But there were and are times when I just take on water for no reason I can discern: I literally stop going to the toilet for a day, my body expands, and my weight increases. Perhaps I’ve been exposed to an allergen I haven’t identified yet. Whatever the cause, I had to identify this in order to explain why I could diligently stick to my “points” allowance for the week, only to find that I had gained a pound! I realised that this fluid gain was masking my real body weight, and if I was patient, my actual weight loss would be revealed when my body’s reaction had passed. After I had accepted this I was able to be more relaxed about the number on the scales, and look at the long-term trend instead.

I lost 7 pounds (about 3 kg), and then maintained my new weight for a few months. I’m now ready to lose the rest, and I started in earnest a week ago. I want to lose another 5 pounds or so, and I have the incentive a trip back home to Melbourne in February to keep me going. The last time my family saw me (3 years ago), I was overweight, ill, and completely in the dark about what was wrong with me. Although they have tracked my health progress on the phone and by email, this will be the first time they’ve seen me looking fit and well – so I’d like to add slim to that picture, if I can. So wish me luck, as I live the tricky double of a calorie-restricted GrainFreeWorld!



After about six months of avoiding all grains in my diet, I reached a kind of plateau in my recovery. I felt pretty good, and functioned normally most of the time, but part of me remembered how it felt to be really well, and I knew I wasn’t there yet. I’ve written in another post about the range of other things I was doing to give my body the best chance to heal and rebalance (exercise, sleep, vitamins, meditation), but I started to wonder whether I had reached the end of the self-help road. I thought it was probably time to look for some expert help.

I don’t remember why I chose acupuncture, but it probably had something to do with my positive experience of it when I was trying to conceive my first child. At the age of 35 I was a bit worried that I may have trouble getting pregnant, and after six months of trying, a friend recommended that I try an acupuncturist in Oxford called Jannie White, who specialised in fertility treatments. I really liked Jannie, but I didn’t have time to get to know her very well – I became pregnant a couple of weeks after the first treatment! Although there is no way of proving a connection between the two events, I felt profoundly affected by that one treatment, as if something in my body immediately shifted. My beautiful daughter is now 8 years old, and I do partially credit her conception to acupuncture (although my husband was also involved……..).

Anyway, I found an acupuncturist in Banbury called Danielle Croft, and she listened patiently to my story (which, upon reflection, was probably the first part of the treatment). We agreed that whatever was causing the problem, my symptoms seemed to be related to an over-active immune system, so Danielle said that she would focus on calming it down. Over several weeks she provided a range of treatments (and some much-needed conversations about my health and progress), and soon I felt that I was moving on to the next level of “wellness”. I realised that although my acute symptoms had disappeared since I’d excluded grains from my diet, I had still been living with an underlying feeling of dis-ease or whole-body discomfort.  These feelings gradually began to lessen as the treatments progressed, and my energy levels improved. There were also some indications that there was a positive impact on my hormones – my periods became more regular, and my skin returned to its natural, slightly oily state (I had though that its dryness was just a natural result of getting older). But best of all, I started to feel happier and more optimistic about the future. There had been times in the past when I wondered whether I would ever feel properly well again, or whether I was just going to have to learn to live with chronic, low-level discomfort and fatigue. As the acupuncture improved those residual physical symptoms, I could finally believe that I was going to fully recover. It was a great relief!

Although I haven’t seen Danielle for over a year now, it’s a tribute to her that I haven’t needed to. And it’s good to know that if I start feeling unwell again, I can go and see her for a tune-up.

A question of breakfast


I not afraid to admit that I still haven’t cracked the issue of the grain-free breakfast. At lunch and dinner I hardly notice the absence of grains any more. But I’ve been completely unable to embrace the solution offered in the no-grain and no-carb literature: I do not want to eat a piece of salmon, or a leg of chicken, for breakfast. I do not want to try miso soup. Eggs are fine as far as they go, but I am running at 100 miles an hour most mornings, trying to get myself and two small children out the door by 8:30, and I am not in the mood to cook.

I think this is the first time I’ve mentioned that I can tolerate small amounts of rice. For some reason, perhaps because it has never been a large part of my diet, rice doesn’t seem to bother me as much as other grains. (The harm-hierarchy goes wheat, rye, oats, corn, rice.) So I’ve been eating Dove’s Farm cereal flakes for a few months now, which is a mixture of rice and buckwheat, and one of the very few wheat-free cereals that doesn’t contain any maize. I have it with fruit and Greek yoghurt, which is great, but I’m really tired of having it every morning (except Sundays, when I have buckwheat pancakes – see the Recipe tab). Breakfast is definitely the hardest meal to decouple from grains, and even after two years a breakfast without bread or cereal seems inadequate and unsatisfying. This probably explains why I’ve been eating the same breakfast for over six months, now that I’ve found a cereal I can tolerate!

I wonder whether this difficulty is purely cultural, or if there’s something more to it. There are plenty of societies that cope with alternative breakfast foods, and the ubiquitous presence of bread and breakfast cereals is so heavily marketed in our society that it’s easy to imagine that we’re all brain-washed in some way. On the other hand, there is something slightly delicate about the morning stomach, which craves something slightly bland and sweet, rather than a heavy, strongly flavoured menu. I’m not a huge fan of the English breakfast, which is probably something to do with my vegetarian past, and who has the time to cook on a weekday morning? Dr. Atkins (himself apparently overweight when he died) must have had a wife or personal chef to prepare his eggs and bacon in the morning: I need quick and easy option, something to eat with one hand while I’m packing lunch boxes with the other.

I’ve recently had a go at baking my own bread again (as commercially available wheat-free bread also universally contains maize). I’ve found a bread-making flour which only contains rice, potato starch and tapioca, and it produces an acceptable if slightly cake-y loaf. I keep it sliced in the freezer, and use it when only a sandwich or a slice of toast will do – which is actually less often than I thought. I’ve tried the same recipe for pizza dough, but found it too heavy. I now make my pizza following Jane Kennedy’s inventive recipe – the base is made out of grated zucchini (courgette), mozzarella and a beaten egg. Hmm, maybe Jane has some ideas about breakfast? I’m very open to suggestions.

Inflammation and depression


I’ve had a frustrating week this week, with unexplained bloating and water retention: with no change in my diet, I’ve managed to put on 3 llbs, which is usually a sign of something going awry. I often wonder about the bloating reaction, and its relationship to inflammation in the body. There seems to be some kind of a web of relationships between the over-stimulation of the immune system, fluid retention, aches and pains in the muscles, and maybe even low mood and depression. I recently heard piece on BBC4 radio, on a programme called All In The Mind, which discussed a possible link between auto-immune disorders and depression (broadcast on 29 May 2012 and still available on the BBC iPlayer). The research suggested that people with auto-immune diseases suffered disproportionately from depression, and that this could be linked to the amount of inflammation in their bodies.

I found this fascinating, because my reaction to my trigger foods includes low mood, as well as the physical symptoms. And the change in mood can happen suddenly, within 15 minutes or so of eating something I shouldn’t. I can’t help wondering whether my body’s inflammatory reaction to certain foods also has an effect on how I’m feeling emotionally. For example, a couple of weeks ago I decided to treat the children to some microwave popcorn. They had never seen popcorn popping before, and we gathered around the microwave together like we were getting ready to watch a TV show! They loved hearing the mini-explosions, and when I opened the bag, the smell was so enticing – hot and salty and sweet all at once. So I decided to take a risk and eat a few handfuls.

They were delicious, but within minutes I started to tremble slightly, and my heart-rate increased. I had also forgotten about the instant effect on my energy levels. It’s like I’m having an internal “brown-out”, and everything suddenly feels like it’s a huge effort. But I also became aware of a creeping feeling of unease, like there was something I should be worrying about. Minutes earlier my mood had been “normal”, but now the world was slightly “off”, and I felt like sitting down and feeling sorry for myself. I’ve always assumed that the low moods I experienced when my symptoms were at their worst were related to the frustration of my situation, and the constant stress of poor health. It’s so hard to separate that kind of (completely understandable) depression from something which may be caused, or encouraged, by a physical reaction to a substance. However, if I needed any more incentive to stay away from my trigger foods, this theory has certainly provided it!

Social leprosy


There is no better guarantee of social leprosy than the inability to eat grains, especially wheat. Today was a perfect example: it was my company’s quarterly meeting, when the whole firm meets to discuss performance, share information, set goals…. and eat lunch together. The spread is standard British cold buffet fare – sandwiches, sausage rolls, pizza and spring rolls, followed by cupcakes, brownies and flapjacks, none of which I can eat. Now, you might imagine this is a good thing, and it is good for my health and my waistline. But I haven’t been working at this firm for long, and eating lunch is part of the ice-breaking process before the meeting begins in earnest. So I join the queue and grab my plate, and peer hopefully at the food, looking for something I can tolerate (I’m not hungry, because I have eaten my lunch half an hour earlier). As usual, I fall upon the fruit, adding a few crisps to my plate to make it look less holy. I still get the usual comments: “Is that all you’re having?” “Are you on a diet?” “Wow, healthy! You’re making me feel bad!”

I have explained to the people in my department that I have a restricted diet, but there are many others I only ever see at the quarterly meeting, and there simply isn’t time to explain to everyone the reason for my virtuous plate. So I smile and say “I’m not that hungry!”, and keep going. Of course it doesn’t matter to most people, but sometimes it matters to me, because there are moments when you just want to “belong”. Food is a big part of that sense of belonging, even when it’s a cold, fat-laden buffet in a corporate setting (or perhaps especially when it’s a cold, fat-laden buffet in a corporate setting). At these moments I sometimes have a childish “Why has this happened to ME?” moment, when I wonder what I did to deserve being unable to eat the same food as everyone else. Those moments used to be more frequent, but they are less so now. I have adapted over time, become more accepting, and have (mostly) learned to be grateful that my illness actually had a cause that I was able to identify and deal with.

But there are times when all I want to do is scoff the egg and cress sandwich, the cheesy pizza, and the crispy spring roll dipped in sweet chilli sauce. And then I want to finish off with a hunk of dark chocolate brownie or a butter-iced cupcake, accompanied by a hot, caffeine-filled drink (I can drink tea, but how I miss the cake/biscuit and tea combination!). And then I want to sit down with the girls I work with and moan about how much I’ve eaten and how bad I feel! Instead, I’m the leper in the corner with the fruit platter.

The whole picture


There was a time a couple of years ago when I was fairly certain I had chronic fatigue syndrome, and I the idea really scared me. While I knew that excluding grains from my diet was making a big difference, I thought it would make sense to treat myself “holistically”, and make sure my overall health was as good as possible. So as well as monitoring my diet carefully, I started filtering my water, taking a high-strength multi-vitamin and some other supplements, and exercising regularly (I also went to an acupuncturist – more about that in another post). I really don’t know how much these extra elements contributed to my recovery, but I keep doing all of them, just in case!

Yoga is a favourite part of my exercise routine, although I’m not able to get to a regular class at the moment, so I make do with a good selection of DVD’s. I’m a big fan of vinyasa flow routines, and my favourite teachers are Zyrka Landwijt, Barbara Benagh and Seane Corne.  I think it helps to have attended some regular yoga classes before relying on DVD’s, because you have an idea of the basics, and hopefully know your limits! But having been to some pretty uninspiring classes in my local area, I treat these DVD’s as a chance to be instructed by some of the world’s best teachers. Especially for someone who lives in a rural area, they are a pretty good option.

I also think yoga is the perfect “moving meditation”. I did a short course in Mindfulness Meditation last year, and really enjoyed it, but found that I simply couldn’t manage to set aside a separate 10 or 15 minutes every day to dedicate to mindfulness practice. Instead, I focussed on the things I had learned about incorporating mindfulness into daily life, and I now practice mindful driving, mindful walking and mindful tooth-brushing! But I especially like working it into my yoga, and it’s very easy to cultivate awareness of the movements of your body, your contact with the ground, and especially your breath, during the practice. I used to think that yoga helped me to sleep simply because of the physical act of stretching and releasing tension, but now I  think there’s more to it: the simple act of being fully aware of the body gives the mind space, and allows it to uncoil as the body uncoils. Even small moments of presence have a lasting effect, and seem to allow for a deeper sleep. All of which seems to have contributed to my recovery.

The mystery of food “allergies” and “sensitivities”


It’s the last day of the school holidays today, so I shamelessly parked the kids in front of the computers, and sat down to look at some of the books I’ve accumulated about food allergies and sensitivities, especially about grains and gluten. I thought if I was going to write a blog about this stuff, I needed to remind myself of some facts! As I looked through them I remembered why they are sitting on the shelf, and not lovingly placed on my bedside table. Although I was able to glean bits and pieces of information from many of them, nothing actually seemed to fit my case or my symptoms. There is a heavy emphasis on coeliac disease, which is understandable: this is a “true allergy”, a life-threatening condition which remains undiagnosed in many people. But I’ve been tested for it, and I don’t have it.

I then assumed that I must have a less well-established “food sensitivity”, an IgG antibody reaction (as opposed to an IgE reaction). I told my doctor I was going to have this test, and she basically said “It’s your money!”. I deliberately started eating grains again for several weeks, and then sent my blood off to YorkTest for a FoodScan food intolerance test. I couldn’t believe the results when they arrived: although I scored highly for a reaction to eggs and dairy (which I can eat with no problems whatsoever), I scored zero for barley, corn, gluten, millet, rice, rye and wheat. It was a bad moment. I actually wondered if I was going a bit crazy, imagining everything.

A consultation with a nutritionist was included with the test, and I immediately made my appointment. The poor woman wasn’t much help. She was clearly used to dealing with people who wanted to talk about the things they were actually shown to be reacting to, not things the test had excluded. She still wanted to me exclude eggs and dairy from my diet to see if it made a difference, but when I added these to all the other things I couldn’t eat, I was basically living on meat and fruit and vegetables (traumatic for an ex-vegetarian). Still, I persisted with the diet for several weeks (including during a holiday in France, which was a nightmare), and I didn’t feel any better than when I had been excluding grains alone.

It took some time, but in the end decided I had to concentrate on how I actually felt rather than looking at the numbers on a chart (sounds obvious now, but it wasn’t then). I didn’t get any symptoms when I ate eggs or dairy, and avoiding them was making life even more difficult than it was already.

The nutritionist did say that there were other tests I could have around reactions to grains, but in order for them to work, I would have to start eating grains again! Having just recovered from my last bout of enforced grain-eating, this was out of the question for me. So we parted ways.

I still don’t know what those “other tests” are, and I wonder if I should look into them further. It is possible that they would require several weeks of eating wheat and other grains, and I wonder how I would cope with work and motherhood being unable to move freely or concentrate properly, existing on painkillers. Would it be unnecessary suffering to tell me something I already know? Or could it could scientifically validate my symptoms, and maybe narrow the range of foods which are a problem for me?

Sunday morning breakfast


Had my favourite Sunday morning breakfast today: buckwheat pancakes. They are so simply to make, and they are the closest you can get to a cake-like texture without wheat flour – soft and fluffy and perfect with conserves (apricot or forest fruits are my favourites), honey or Nutella. My other half has also been known to enrobe them with butter and maple syrup, and then sprinkle them with nuts! The recipe is simply:

  • 1 cup buckwheat flour
  • 2 teaspoons baking powder
  • 2 eggs
  • enough milk to make a fairly thick batter

Beat the ingredients together gently, and allow to stand for 10 minutes. You may find the mixture has thickened, and requires a little more milk. Drop generous tablespoons of the mixture onto a hot, lightly greased frying pan, and………well, I don’t need to tell you how to make pancakes. My kids happily eat these, and can’t tell the difference from the ones I make with wheat flour.

A note on buckwheat flour:

Despite its name, buckwheat is a seed, not a grain, and I find that I can tolerate it quite well.

Buckwheat flour can be a little challenging to obtain, at least in the rural parts where I live. I like Dove’s Farm, which is good value for a big packet of the stuff, but I can only get it over the internet, and the postage cost is extortionate. I have recently discovered Infinity Foods, which is more expensive, but this is because it is both organic and certified gluten-free. I was able to buy it from my local health-food shop in Chipping Norton in Oxfordshire, and this makes more sense for me because there are no postage costs.

Hello world!


OK, so this is my first post, to an audience of…… probably no-one! But I can’t believe there aren’t other people out there in the world who can’t tolerate grains or pulses. I’m unique, but I’m not UNIQUE. So what do I mean when I say that “I can’t tolerate grains or pulses”?

Firstly, I should say that I do not have coeliac disease. I was tested for it, and when the test came back negative, the doctor washed her hands of me. Not unsympathetically, she informed me that conventional medicine only recognises the “true allergy” of coeliac disease, and if I didn’t have it, they couldn’t help me. I had an equally sympathetic rejection from a consultant rheumatologist, which gives you a hint about the kinds of symptoms I was suffering. They were things like:

  • muscle soreness and stiffness
  • tender skin
  • bloating and unexplained weight loss/gain
  • fatigue/lack of energy
  • racing heart (over 100 bpm at rest)
  • irritability, sadness and other mood swings

Importantly my symptoms were not digestive, and I don’t believe they are related to gluten in particular. But they were bad enough to make me miserable and worried for my health. I was actually upset when I was told that I didn’t have coeliac disease! I so wanted to put a name to what was happening to me, and therefore have a defined treatment path. But instead I had to work things out on my own – and two years later, I’m still going through that process. This blog is part of that: trying to connect with other people who are going through, or have been through, the same experience.

I also want to keep a kind of diary of the challenges I face, talk about the difficulty of living without grains in our society, and share recipes! I love food, but it’s impossible to find any kind of cook-book which is totally grain- and pulse-free (with one magnificent exception being Jane Kennedy’s Fabulous Food Minus the Boombah and its sequel), and I’ve had to invent all kinds of work-arounds, to avoid having to cook two separate meals every evening (my family still eat grains in abundance!). It’s been a two-fold process of coming to an acceptance of the reality of my situation (if I eat this I WILL feel utterly wretched), and trying not to feel like freak. It hasn’t been easy, but I want to use this blog to recognise my progress.

So….. watch this space.