Jess’ Theory: Digestion is King

Digestion is King. Photo credit Morgue Filer User naama

So I have a theory. A theory about the connection between the food I eat, my digestion and subsequent fatigue and migraine headaches.

It is only a theory, not backed up by any precise science or medical research.

It is a theory based on the solid evidence that my body has presented to me time and time again. My body the great scientific experiment 🙂

My theory goes something like this:

(I warn you it is not a particularly pretty theory..)

1. I eat a food that is technically ‘Jess Friendly’ (a technical term meaning gluten and dairy free)
2. Sometimes immediately, though often up to day or two later, I have a severely bloated and distended abdomen, I suffer with spasms of cramping pains and most significantly to this little theory of mine, my digestion grinds to a halt. No pooping. My body has firmly dropped anchor at constipation-city.
3. I can’t stop yawning. I have a never ending need to rest and when I do I fall asleep. My energy is drained, reaching new lows.
4. My head is filled with haziness for a day. And then a dull ache builds up on the left side of my forehead. It creeps up gradually, often so slowly I don’t always recognise what’s happening. But the pain always starts on the left side. It spreads down behind my left eye and inches across my face and down my nose. I feel nauseous, dizzy and generally spaced out. Bright lights and loud noises are horrible. On the worst occasions I end up in bed horizontal and not moving with a cold compress over my eyes.
5. I take co-codomol, the pain reducing drug, which, if I’m lucky hits the spot and gives respite for a few hours. The side effect of this glorious drug…constipation. A classic catch-22. Either, a) I try and relieve the pain by taking the drug and thus exacerbate the constipation, which caused the headache in the first place or b) I just suffer in agony, waiting for the pain to pass.
6. Once the acute pain is passed, usually after a long sleep, I’m left with a head that feels physically battered and bruised. I feel fragile and very sore, as if someone has been pummeling my head with their fists. This gradually subsides over a day or two.
7. Slowly after 3-4 days the cogs of my digestive system slowly begin to grind into life once more and things begin to return to normal.
8. Oh and to top it all off, around stage 2, a giant spot (or three) forms on my chin, huge, red and very painful. The toxins literally popping out to say hello any way they can.

This was the story of last week for me.

I ate a, supposedly, gluten free and dairy free pizza whilst at a friend’s house. I suspect the base was gluten free (it was too hard and tasteless to have been wheat filled) but the toppings (despite pertaining to be Jess friendly) most likely were not, or at least had been contaminated in some way. I reacted immediately with bloating and stomach pains and then as the week progressed, the full theory played out.

This is not the first time this pattern has happened for me. A few months ago, Mr B and I ate dinner at a (new to us) local pub. I was ecstatic that this place served gluten free dairy free fish and chips! And the main course was, and has been on numerous occasions since, fine. When I’ve only had the fish and chips I’ve been fine. No reaction. But that first time in my over eager state I ordered the gluten free crumble for dessert. So overjoyed that there was a gluten free dessert, that I forgot the key ingredient to a good crumble topping is of course butter. Dairy. It wasn’t until several spoonfuls down that I made the connection. Oops. And the next day I paid the price with the above theory cycling into action.

There was another time involving sausages at a friend’s BBQ. And another involving crème brûlée (yes I know it’s dairy laden, I was so brain fogged at the time I stupidly thought it was just made from eggs) and another after eating pâté. These are just the incidents that I have recognised and remembered as preceding a severe headache.

The fact it is not usually an immediate reaction is my excuse for why I have not joined the dots before. It was a real light bulb moment when the penny finally dropped last week. ‘I’m so tired, I have a huge spot, I haven’t been to the toilet properly all week, my head is so sore, yesterday I had a migraine’ I complained to my Mum and Sister over Skype. My Mum (always the wise one 🙂 ) asked, ‘what have you eaten?’ And then after a few moments of back peddling through my memory in search of a ‘bad’ meal, I realized. The pizza on Sunday. I bet that will have been it.

I’m not a doctor. And medically what I’m saying may make no sense. But I think from the research and reading I have done on the topic, our digestion is at the heart of our health and when it fails to function optimally, negative consequences show up across our bodies. It may not be headaches and migraines for everyone. But for me I clearly have a vulnerability in that area and too many times now my body has followed this pattern. So for me and my body my theory makes sense. Digestion is clearly the king for me and when he decides to have a day off, it has as huge knock on effect, with the rest of the kingdom going down with him.

Through having ME/CFS I have had it drummed into me to ‘listen to my body’. One of the causes of the severity of my illness was me ignoring all the warning signs that my body gave me. Now ‘listen to my body’ is my mantra. It helps keep ME/CFS at bay. It is not full-proof but it helps most of the time. And now it has helped me identify another symptom inducing pattern at work.

I’m not sure what the solution is to my theory, other than to be uber cautious (even more than I already am) of everything I put in my mouth and perhaps to never eat out again (which is just too restrictive and dull to be a viable option), but now I can clearly see the problem, I’ve got a better chance at finding a solution.

What about you? Do you suffer from headaches and migraines when you eat something wrong?

Do you listen to your body? What does it tell you?

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Mashed, puréed, blended or blitzed, give me baby food and my body is happy

Baby food all the way! Photo credit: Morgue File

I thought it was about time I returned to the theme of my diet and food intolerances. I’m sure you’ve all missed hearing about the idiosyncrasies of my digestive system and bowels and been waiting with bated breath on the edge of your seats in anticipation….No? Oh that’s just in my head then.

This week I had my 2 month review appointment with my nutritionist. It gave me pause to stop and reflect on how things have been going since I cut out the long list of foods that the food intolerance tests showed I have issues with – it seems there are not many things in life, food or otherwise, that my little ME/CFS addled body does not have an issue with..grrrrrr.

And you know what? I have seen improvement. Whoooooo! Now I don’t mean that my abdomen is super flat and smooth (I wish…tho think that would involve a lot of gym visits as well as no trigger foods) and that my bowels are operating regularly without assistance. No, sadly miracles don’t happen. But I am getting far less bloated and far less frequently. And with the aid of the organic natural soluble fibre supplement acacia senegal I am seeing bowel activity most days! Those of you reading this who share my IBS and digestion woes (and I know there are a lot of you) will fully appreciate just how wonderful this is. I would even go as far as to say that I’m having toilet action nearly everyday!

I haven’t cheated and had any, not even a tiny bit, of my trigger foods AT ALL since I came back from France a month ago. And the only trigger food I had during my holiday was a couple of sips of wine (grapes and yeast are no nos for me) and a little garlic butter on a steak. So overall I am pretty darn pleased with how things are going diet wise. As well as my digestion improvements I think I have seen improvements in my ME/CFS symptoms as well – fewer bad headaches and slightly more manageable fatigue levels. The improvement in fatigue is negligible but I’ll take that! Any progress is better than no progress after all.

Water water water, how much do you drink? Photo credit Morgue File

I have still had the odd times where my digestion has just seemingly gone on strike and I have bloated up to resemble a final trimester pregnant lady and had no toilet action.  But a pattern is beginning to emerge as to the cause.

My last day in France I had a steak that came with garlic butter melted all over it. The presence of dairy on my plate was not a good start but slowly I have realized that the hunk of red meat is not so good for me either. It wasn’t the best steak in the world and had been pretty near cremated (I’d asked for bien cuit – well done – knowing the French tendency to under cook meat but this chef was clearly used to cooking for tourists as bien cuit was tres tres tres bien cuit). It was very very chewy and took far too much of my limited energy just to chew and swallow. It made me realize that if it was that hard work on my jaw and teeth, imagine how hard it was on my poorly digestive system. I was very bloated for several days after, each time I ate, the food baby would grow. And worst of all, no pooping for 4 days. Urrrrggghhhhh indeed. I was incredibly fatigued that week with a real spike in my ME/CFS symptoms which was to be expected what with the effort of the travel home  but the red meat will not have helped and may well have been a significant contributing factor to my problems. Since then I’ve only eaten red meat twice and both times it was  home made very slow cooked tender lamb (a mild korma and a tagine) where the lamb literally melted in my mouth. And you wanna know the good news? Eating the lamb in this way seems to have been okay! No major bloating and no blockages in the poop department – yipppeeee!

Relaying all this to my nutritionist she asked me what blood group I was. Huh? I was a bit confused. Whilst I rummaged in my purse to find my NHS blood donor card which I new stated my blood type, my nutritionist explained that those of us with type A blood groups have far less stomach acid than the other blood groups. Less stomach acid means less fuel to break down food which leads to bloating, constipation and all the other lovely digestive problems that are such a part of my life. Ah Ha! I eventually located my donor card and guess what? Yep I am blood group A Negative. So I naturally have low stomach acid. Great. Makes sense. Low stomach acid is particularly problematic with heavy proteins as they take more to break down, hence my problem with the super charred steak. I was advised to take several digestive enzymes each time I ate steak and to save it for special occasions. Fine by me.

Now add to my already low levels of stomach acid the fact that I drink buckets of water each day and you get even lower acid levels meaning it is even harder for my body to break down food. Good okay. So I should drink less (I drink close to 3 litres of filtered water / herbal tea per day) . Yes well that’s easy to say. But I am constantly thirsty. And if I don’t drink when thirsty I get a horrendous headache. So yes I have the choice between low stomach acid and digestive problems or persistent thirst and headaches. Wow what a choice. The reason I am so thirsty is thanks to my lovely friend ME/CFS. Thanks to my nervous system being totally screwed and permanently stuck in stress mode my brain is constantly being signalled that I’m thirsty. Hence the gallons of water I get through each day.

So where does this all leave me then? Well avoid heavy cuts of meat like steak for a start. Stick with my soluble fibre focus to keep me regular.

Smoothies are good for my tummy! Photo source Morgue File

Purée, mashed, poached, blended into smoothie or blitzed into juice, soup, slow cooked, soaked, de-seeded and de-skinned (yes I am the crazy lady peeling the cucumber and scooping out the tomato seeds). As Mr B says, give me a jar of baby food and I’ll be just fine…But hey, call me crazy, I don’t really care, cos it seems to be working. Fewer skins and seeds seem to be helping my digestive system to function that bit more smoothly. As a reminder of this yesterday I had 5 dates as a snack with my morning smoothie. My tummy was near enough instantly bloated, hard to touch and wasn’t happy for the rest of the day. Dates have quite tough skins….

I’m pondering a few more dietary things:

Raw v cooked fruit and veg – a raw salad leaves me feeling worse than steamed veg; eating an apple sends my tummy outwards in seconds whereas stewed apple does not.

Sugar. Sugar, sugar, sugar. If I eat ‘too much’ (by which I mean very little) refined sugar my fatigue increases. I noticed this with the granola bars and flapjacks I made this weekend for my friends coming over. The flapjacks were an overdose in golden syrup so yes naturally high in sugar and naturally bad for me. But the granola bars used light muscovado sugar. I keep reading about people who ‘quit sugar’ and felt so much better. But they cut all forms of sugar out of their diets, including fruit and high GI veggies. I think I need to detox a little from sugar. But I’m very wary about triggering detox symptoms as I do not need to trigger an ME/CFS flare, that’s the last thing I need to do. Cutting refined sugar out of my life isn’t hard as I don’t eat much of it anyway but for now I think I’ll keep the fruit in my life.

So for now I’ll keep pondering.

How are you doing with your diet? Do you notice an improvement in your health when you eat a certain way? What works for you? Whilst diet is inherently personal and what works for me may not work for you and vice versa but it’s always good to share. Information is power after all.

Must go, time for me to purée some bananas 🙂

If  you missed (what were you thinking?!) my previous posts about my diet and food intolerances, you can read them here, here and here.

A few more thoughts on Food Intolerances in ME/CFS

Sunflowers mean happiness to me. Photo credit Morgue File User Irish_Eyes

In recent weeks I have written a lot about food intolerance testing and what my test results mean for me. I see diet and digestion as central to my recovery from ME/CFS. Digestive problems are put simply a royal pain in the butt (haha pun intended).

Digestive IBS type symptoms are common in ME / CFS sufferers. You probably know that IBS is a stress related condition. If you’re anything like me your digestion seems to fall apart at times of stress such as exams or job interviews. This connection can be taken a step further in ME/CFS. Neurological understanding  shows that the nervous system of an ME/CFS patient is stuck in the stress response mode. This means that all non essential body functions are automatically paused by our brains in order to concentrate our energy supply on dealing with the stress . So if you’re facing a tiger you need your heart to beat and your eyes to be on high alert but less important is whether your digestion breaks down the sandwich you ate for lunch smoothly.

In short digestion is a secondary body function in a stress situation and so it has less energy with which to function. Less energy means less activity and less activity means a sub-optimal digestion ie. that lovely bloated blocked up feeling of constipation. Alternatively the stress response may mean your digestion actually overreacts in order to optimise your body for the situation, ever had nervous diarrhoea before an interview anyone?

To me the connection between stress and digestion is clear. In a normally functioning ‘healthy’ human where the nervous system is not stuck in chronic stress response mode, the redirection of energy away from non-essential body systems is fine, because it is not perpetual. It is only temporary. However in ME/CFS when we are permanently facing that hypothetical tiger, continuous redirection of energy away from our digestive system results in chronic IBS symptoms which give the perfect environment for food intolerances to develop.

But to me it also seems like it is a bit of a chicken and egg situation. Which comes first? ME/CFS symptoms or IBS type symptoms? The analysis in the previous paragraphy would suggest that IBS symptoms are a consequence of ME/CFS (in the same way that the cause of POTS in my case was in part at least, the de-conditioning of my body through me having ME/CFS).  However arguably it could be and seemingly was the other way round for me. I first developed IBS symptoms when I was at University in 2005. I was diagnosed with IBS at that time and I was wheat and gluten free from then onwards. My first taste of ME/CFS symptoms in the form of fatigue and myalgia came a few years later in summer 2007. I wasn’t actually diagnosed with ME/CFS until February 2011.  My IBS is type C (meaning constipation rather than D for diarrohea for those lucky enough not to be familiar with IBS lingo). Being constipated is clearly not good for your body. All those toxins sitting in your gut refusing to leave. Yes, definitely not ideal given it provides highly fertile soil in which chronic illness can take hold and flourish. So did my IBS cause my ME/CFS? Or were my IBS symptoms purely the first symptoms I showed (or shall we say listened to) of ME/CFS? I think it’s safe to say I have a sensitive gut. It is, for whatever reason, my weak spot (one of many it has turned out). Thanks to this weakness perhaps this was where ME/CFS was able to take hold first in my body?

As I say a classic chicken and egg scenario. Either way, digestive problems play a big part in ME/CFS, not just for me, but for the majority of sufferers.

In light of this here are three key points that have come out of my food intolerance research, testing and nutritional support:

• The more you eat a certain food the greater your risk of developing an intolerance to it. This is the basic guidance and it does make sense for me with many of the foods the test found me intolerant to. Take kiwi for example. I was having a kiwi each day with a handful of almonds as my mid morning snack. I’d been doing that everyday for about 2 years. When I cut wheat and gluten out of my diet 8 years ago cakes made with ground almonds became my staple treat. I used Kara coconut milk as my dairy free milk alternative on my muesli each and every day for the last few years. And now I find I’m intolerant to (amongst other things) kiwi, almonds and coconut. Funny coincidence? Not so much.

• To lessen the risk of developing an intolerance, you need to eat a varied diet (which I thought I did but apparently not so much…again kiwi is the case in point…). You need to rotate food types. Basic rule of thumb is a rotation of 4 days. So I’m thinking I need to reduce my dependence on bananas and dark chocolate cos I’d be a bit screwed and highly upset if I became intolerant to either of those!

• An important point to note about food intolerance and allergen testing is that  if you haven’t eaten a particular food regularly for the few months prior to testing then in general you will score a negative reaction in the intolerance testing. This was the case for me with wheat and gluten. It is several years since I (knowingly) ate any wheat or  gluten (then it was only for two weeks for a celiac screening) and thus I didn’t have sufficient traces of these foods in my blood sample to provoke a reaction. But I know all too well how badly gluten and wheat affect my ME/CFS symptoms as well as my IBS so they are firmly staying on the NO list. This also shows how severely intolerant I am to cows milk and grape given my diet wasn’t at all high in either of these foodstuffs and yet I did react to both cows milk and grape very strongly. Alternatively it may mean that I have been ingesting these foods in hidden ways, for example the organic sugar free jam I used contained grape juice as the sweetener which just goes to show how important reading labels are if you do buy anything at all ‘processed’.

• I know some of you are skeptical about food intolerance testing. To be honest so was I. But things got too bad for me not to try it. It’s still early days and things are a long way from me saying I have a happy digestive system. But things have been better since I cut out all of my trigger foods (no more egg and soldiers for breakfast, kiwi and nuts as snacks, tofu stir fries etc) both in terms of IBS and overall ME/CFS. And that is encouraging me to keep going and just reinforces in my mind the importance of diet and that we truly are what we eat.