A few more thoughts on Food Intolerances in ME/CFS

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

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.

7 Responses to “A few more thoughts on Food Intolerances in ME/CFS”

  1. thehomeschoolingdoctor August 10, 2013 at 8:52 pm #

    Lay off of those bananas and chocolate! Those are “musties”! (As in must-haves!) Thanks for the post!

    • myjourneythrume August 10, 2013 at 9:18 pm #

      I know I must! Tho i am munching 84% dark (with puffed quinoa pieces in it) as I write this…oops but it just tastes so damn good!!! Thanks for reading and commenting 🙂

      • Jackie August 11, 2013 at 5:26 am #

        OMG. What is this chocolate bar you speak of? It sounds like a sort of allergy friendly Crunch bar (do you have those there?)

      • myjourneythrume August 14, 2013 at 10:31 am #

        It is just like a crunch bar! But so much better! It was just a bar of super dark choc with puffed quinoa in with a trace of Madagascan vanilla. I found it in the bio section of a French supermarket. I’ve bought several bars of it back home with me! I’ll try and post a pic. It made me think of making rice Krispy cakes with the puffed quinoa.

  2. Trisha August 12, 2013 at 1:03 am #

    Hm, I think I’d better lay off the dark chocolate too! I hope knowing the foods you’re sensitive to will jump start you on your road to recovery.

    • myjourneythrume August 14, 2013 at 10:16 am #

      But it’s so hard, they’re so tasty!! Thanks for your kind wishes.


  1. Mashed, puréed, blended or blitzed, give me baby food and my body is happy | my journey thru M.E. - September 11, 2013

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

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