Monthly Archives: November 2013

Taking a Step Backwards

I’ve been struggling for the last week.  I don’t know why;  perhaps it’s the change in the weather, perhaps I’m fighting off an illness.  All I know for sure is I have less energy than usual, and the everyday tasks that I’ve been gradually getting more successful at managing are once again too much for me.

So I’m writing this post as much for myself as for anyone else who’s also struggling.  Here’s what I know I should be doing to get back on track.

  1. Listening to my body, not pushing to do more activity than I feel I can manage.
  2. Getting enough sleep.
  3. Having regular rests in the day
  4. Not catastrophising.  It’s easy to let the negative thoughts take over – “I’m back to square one”, ” I’m never going to get better” “nothing I’m doing is working”
  5. Doing very gentle stretching exercises.  I’ve got some very simple yoga exercises that I do.  WIth the decrease in my daily activity and more lying on the sofa my muscles get more achy.  Gentle stretching helps my circulation.
  6. Using distraction to stop focussing on how bad I’m feeling
  7. Reducing neurological activity
  8. Continuing with my healthy eating
  9. Focusing on things I’m grateful for

So how am I doing at the above list?

  1. Sometimes with three children I am forced to do more than I feel able.  However, as much as possible I am easing off on the activity front.  My husband is being really supportive and the kids are quite good at fending for themselves (sadly they’ve had plenty of practise in the last two years).
  2. My sleep is not as good as usual.  I have been having some daytime naps because I am so tired, but this isn’t helping my night time sleep.  Moving forwards I will be trying to do more guided meditations throughout the day to stop me reaching the point where I feel I need the daytime sleep.  I will also make sure I have valerian tea before bed to aid my night time sleep.
  3. For some reason I have been reluctant to go back to my rest schedule from a few months a go – 4 rests of 30-60 minutes each.  I think this is because I don’t want to admit that I’m not maintaining my progress.  However, I know that the way to get out of this is to nourish my body with plenty of rest.  Tomorrow I’m going to be strict with myself.  This will hopefully stop my need for daytime naps and help me improve my nighttime sleep.
  4. I have had some negative thoughts creeping in, but I’m aware that they’re not reality. By using guided meditations that focus on positive visualisations I will be counteracting these thought patterns and building  positive neural connections.
  5. I’ve been doing little bits of gentle yoga and stretching exercises.
  6. I’ve watched plenty of Rom Coms and other “happy” TV over the last few days.  That’s worked well at distracting me, but I think it’s been too much neurological activity.  I’ve also been doing a bit of reading, but despite trying several books I can’t get into any of them.  I’m not sure if this is because the books are not very good, or because my brain doesn’t want to do reading at the moment.   I’ve just downloaded a new audiobook.  I’m hoping that will be a less demanding distraction.
  7. I think I’ve been having too much neurolgical activity.  When I’m physically fatigued and looking for distractions TV, computers and books are the obvious choices.  However, by increasing my rests I will decrease my neurological activity.
  8. My diet is generally good.  I haven’t managed to do my juicing the last few days; it has felt like too much effort, but my meals are still good.  I also had a piece of gluten free cake, so I have slipped on my sugar-free eating, but overall I think I’m still a 9/10 for my diet.
  9. I have found focusing on things I’m grateful for helpful in the past, and I have been using this technique to counteract the negative thoughts.

Sometimes it’s necessary to take a step back on the road to recovery.  However, I know I’m not back at square one.  I have a really good understanding of my illness and what to do to feel better.  I just need to be extra diligent at doing all these little actions over the next few days.

To anyone else struggling at the moment.  Remember, it won’t last forever, things will improve.  A book that really helped me last year was Things Get Better by Katy Piper.  If you’re struggling to cope with everything I highly recommend it.



Our Experience Of Going Gluten Free

This post has been encouraged by several people who think they may benefit from going gluten free, but are overwhelmed by the idea of doing it.

I am planning another post about the technicalities of what gluten does in our bodies, this post is going to focus on how we changed my daughter’s, and later, my diet.

Why Gluten Free?

Our journey into the world of the gluten free diet began after a test, via our nutritionist, in Spring 2012 revealed my daughter was gluten intolerant.  In some ways this was a relief.  She has had health problems for years, and numerous doctors, including several gastroenterologists, had failed to help her.  She had had a blood test for coeliac disease in 2010, but this was negative, and there was no mention of gluten intolerance being possible if it was not coeliac disease.  I understand that non-coeliac gluten intolerance/sensitivity is only now being accepted by medical professionals.

Food Shopping

I was still very weak in spring 2012, so the details of how I coped with my daughter becoming gluten free are hazy.  I had only just started attempting to do weekly on line grocery shopping, and found it incredibly draining.  I was given a list from our nutrtionist of all the foods that may contain gluten, there is a similar list available as a download from the coeliac uk webpage . The obvious foods like bread and pasta didn’t phase me, I knew I could buy gluten free equivalents.  It was other stuff that I found hard.  For example many, many processed foods contain gluten.  The answer here is to cook your own food from scratch, but I was too ill to do that.  For the first few weeks, as I was shopping, every food label had to be checked .  I soon got to know which products were “safe” and which to delete from my weekly shop.  On-line shopping made things slightly easier, because I was able to look at labels from the comfort of my sofa, and do a search for “gluten free …….” and see what came up. Here are some examples of foods I was shocked to find contained gluten:

  • stock cubes (don’t panic there are now several G.F. brands around)
  • Soy sauce ( Use Tamari sauce instead)
  • Oven Chips* – some are coated in wheat flour.  It seems to be the cheaper ones that don’t contain gluten, but you need to check the packets
  • Crisps* – this is the most random one.  Some crisps contain gluten, some don’t.  Sometimes different flavours in the same range contain gluten.  Again it’s a case of checking every packet.
  • Ice cream* – this was on the list we were given, but in my experience most ice-cream I buy is gluten free.  Of course ice cream cones contain gluten. You still need to check each pack to be sure.
  • Sausages and burgers – you can buy gluten free ones, but they tend to be expensive.
  • cooking sauces e.g. sauces for chicken, pasta etc.  There are some gluten free brands available, but they tend to be more expensive.  Seeds of Change make some good sauces.

Other People’s cooking

In addition, at this time we were still reliant on other people cooking meals for us.  My friends rose to the challenge of cooking gluten free meals, but I’m sure there were occasions where meals inadvertently contained a small amount of gluten (e.g. from stock cubes).  Despite being told we needed to eliminate gluten 100% I just accepted we were doing the best we could, and was honest with our nutritionist about our progress. My mum has struggled with remembering my daughter needs gluten free food, but now, after a year and a few mistakes along the way, she seems to have  a good grasp and tries really hard to cater for us.

Packed Lunches

One of the hardest things to change was packed lunches.  My husband was (and still is) making all the packed lunches and I found it incredibly difficult to find gluten free lunches that didn’t require lots of preparation, that he was willing to prepare.  Our nutritionist sent us a list of ideas for “easy” packed lunches, but these were still too much for him to cope with, and I was incapable of adding extra cooking activity into my day.  Fortunately I found some gluten free falafels and they became the staple gluten free lunch when we didn’t have other ideas;  my daughter still has them regularly in her lunch box. This year, with my improving health my daughter and I have written a list of ideas for her lunches to encourage variation.  We have found the Lunchbox Doctor website an excellent source of ideas, although it is not specifically gluten free.

School lunches

I met with the school cook and found that the school could provide gluten free lunches on some, but not all days.  When we first began this gluten free journey the school had an excellent cook and she told me which meals she could adapt and which she couldn’t.  Since the school could not supply gluten free sausages, I arranged to supply sausages for her to cook.  This meant my daughter was able to have school lunches on more days, and took the pressure of my husband to produce packed lunches.  Unfortunately that cook left and the new one produced food that was so unappealing my children gradually refused to eat any school meals  (the school is going to change catering suppliers to improve the situation).

Eating Out

Occasionally we eat out at restaurants.  We haven’t found this too much of a problem, the key is to select a restaurant that either has gluten free options, or cooks real food.   A lot of the chain italian/pizza restaurants now offer gluten free alternatives.  If we go to our local indian restaurant my daughter orders tandoori chicken and rice.  Carvery restaurants are a good option, because nearly everything apart from the stuffing and yorkshire pudding is gluten free, so there is plenty to choose from.  We have always found restaurant staff happy to adapt food.  We did once go to a restaurant where there were no gluten free options that my daughter liked.  The chef happily made her an omelette even though this was not on the menu.  It can help to phone up before hand and discuss what gluten free options can be provided.

Home Baking

My daughter loves baking.  She was pleased to discover that almost any baking recipe can be made gluten free by substituting gluten free flour for ordinary flour.  You also need to check that your baking powder is gluten free; some brands do contain gluten.

My Experience

My experience of eating gluten free food began gradually.  Although my foods to eat less of list included grains, I had not had a test which showed I reacted to gluten of wheat.  My appointments with my nutritionist initially had to be very short, because I would tire quickly and my brain fog would make continuing the appointment impossible.  Sometimes we would break the appointment into 2 sections so I could go and rest in the middle.  Perhaps if I had been more capable we would have discussed gluten in more detail – perhaps we did and I don’t remember (the joys of brain fog!). I began to have gluten free bread and pasta, but I didn’t totally avoid gluten, and on the occasions where I did eat gluten I didn’t notice any digestive problems.  I can’t remember when I decided to get serious about completely avoiding gluten myself, but I think it was spring 2013. As my health has improved my ability and commitment to change my diet has increased.  At the moment I am gluten free, because I am wheat, oat, rye, barley free.  I am focussing on eating more vegetables and avoiding grains (except small portions of rice and quinoa).  I have found if I pile my plate high with vegetables I do not miss the grains. My reasons for avoiding gluten are:

  1. I was recommended to avoid all the grains that contain gluten by my nutritionist
  2. Because of my daughter’s intolerance I have read about gluten sensitivity and the wide range of symptoms it can cause, many of which are present in CFS/ME (more detail to come in a separate post)
  3. To aid my recovery it makes sense I am trying to eat for optimal nutrition – maximum benefit from minimal digestive effort.  The more I read about grains, the more I realise that they put a stain on our digestive system, and for some people are harmful.

Gluten free does not mean healthy

Many of the gluten free foods in the “free from” aisles at the supermarket are gluten free equivalents of unhealthy, processed foods.  Gluten free biscuits and cakes will still be full of sugar and unhealthy fats.  They should not be consumed regularly if you are trying to improve your health.  However, I have found them useful when we are invited to social gatherings where everyone else is eating cake, and my daughter would feel deprived if she didn’t have gluten free treats.


I hope our experience reassures anyone thinking of becoming gluten free that it’s possible to do.  The initial change takes some effort, but once you have made the change you get into a routine and it becomes much easier.


* if you’re trying to recover from ME I would advise minimising/avoiding processed foods like crisps oven chips and ice-cream.

Banana Protein Pancakes with Berries and Yoghurt

This post is dedicated to my friend Ang who is making a real effort to eat healthily and has found porridge and IBS do not mix.  Oats, and most other grains, are included in my foods to eat less of list, but there’s plenty of other great foods to eat for breakfast.

This is my favourite breakfast at the moment.  I don’t have it every day, because I’ve been advised by my nutritionist to ensure I eat a variety of different foods.

Banana Protein Pancakes with Berries and yoghurt

Banana Protein Pancakes with Berries and Yoghurt



  • 1 ripe banana
  • 1 egg
  • 1 scoop plain whey protein powder (vanilla or chocolate flavoured would probably work, but I haven’t tried them)
  • coconut oil
  • a handful of berries (mine are frozen)
  • live natural yogurt.*


Mash the banana in a bowl, add the egg and protein powder and mix together with a fork to form a lumpy batter.

Heat a little coconut oil in a frying pan.  Add spoonfuls of the pancake mix to the pan to make approx 6 mini pancakes. Cook on medium heat.  Turn when bubbles form on the top of each pancake and the mixture is no longer liquid.

Serve with defrosted berries and yoghurt.

* I use home made yoghurt which has been fermented for 24 hours.  If you have a problem with dairy try goat’s or sheep’s milk yoghurt.


I’ve just been made aware of this amazing TED talk.

I highly recommend you sit somewhere comfy for 17 minutes and watch it.  What this lady has achieved by changing her diet is inspiring.

If you feel like reaching for a biscuit, cake or bread roll, watch this video first.

What causes damage to our gut?

I explained what happens in a healthy gut and the problems that occur in our bodies when our gut is damaged. What causes our gut to go from healthy to damaged? Unsurprisingly, it’s not just one factor.


We’ve probably all been prescribed antibiotics at various times in our life.  We are also exposed to them through food.  Animals, poultry and farmed fish are routinely given antibiotics so our meat, milk, eggs etc. provide a constant supply of antibiotics and antibiotic resistant bacteria.  A lot of fruit and vegetables are also sprayed with antibiotics. As well as having a devastating effect on beneficial bacteria in our body antibiotics also:

  • change benign bacteria, viruses and fungi, giving them the ability to invade tissues and cause disease.
  • Change bacteria, making them resistant to antibiotics, so more and more powerful antibiotics have to be developed
  • have a damaging effect on the immune system, making us more vulnerable to infections, which leads to a vicious cycle of more antibiotics and more infections.

Other Drugs

Most drugs, especially those used for long periods of time have a detrimental effect on gut flora.

  • Pain killers (aspirin, ibuprofen etc.) stimulate growth of certain bacteria in the gut which are capable of causing disease.
  • Steroids (like Prednisolone, hydrocortisone, betamethasone etc.) damage gut flora and in addition supress the immune system.
  • The contraceptive pill has a devastating impact on gut flora, and since an new born baby acquires most of it’s gut flora from it’s mother this will be passed on to the child.
  • Sleeping pills, heartburn pills and other types of drugs can all cause damage to the gut flora, digestive system and immune system.


What we eat has a direct effect on the composition of the gut flora.  This will be addressed further in future posts.


  • Different infectious diseases, bacterial and viral,  can cause lasting damage to the gut flora.
  • Chronic illnesses are often accompanied by serious defects in gut flora.
  • Abnormal gut flora is also commonly seen after surgery, chemotherapy, radiotherapy and hormone therapy.


Short term stress has a detrimental effect on the gut flora, but it usually recovers well once the stressful situation is over.  However, long term stress (physical or psychological) can do lasting damage to the indigenous flora.

Other Factors

The following are also known to have an effect on our gut flora:

  • Physical exertion,
  • old age,
  • alcoholism,
  • pollution,
  • exposure to toxins, radiation and extreme climates

What does this mean for CFS/ME sufferers?

Most of us have been exposed to most of these factors, and as such our gut flora will have been influenced, and will be unable to perform all the functions that it should.  By working to improve our gut flora, by following a good diet we can improve our situation, reduce many of our symptoms and improve our immune system.

When the gut is damaged

I’ve explained what happens in a healthy gut .  Now it’s time to discuss what happens when our microbial gut lining is damaged.  The microbial lining of our gut performs so many important functions that when it is damaged there is a lot that can go wrong.

  1. Without protection from the microbial lining the walls of the gut are open to attack from anything that comes along e.g viruses, funguses, bacteria, parasites, toxins.
  2. These “invaders” can then enter gut cells and cause inflammation of the gut wall, leading to diarrhoea or constipation.
  3. The gut wall becomes malnourished because the “good” bacteria are no longer present to digest food for the gut lining.
  4. The gut cell renewal process becomes slower, the new cells that are produced tend to be less healthy and without protection from the bacterial lining they become abnormal.
  5. The gut becomes unable to digest and absorb food properly, leading to mal-absorption, nutritional deficiencies and food intolerances.
  6. Fibre (which in a healthy gut is beneficial) is not broken down by the good bacteria and provides a habitat for pathogenic bacteria and aggravates inflammation in the gut wall.
  7. The immune system is compromised.  In people with damaged gut flora there are less lymphocytes (immune system cells).
  8. Our gut becomes “leaky” and unscreened molecules can enter the bloodstream, travel around our body and cause damage and symptoms in other organs.  There is a good explanation of leaky gut and how it affects us here, I especially like the diagrams.  In a nutshell it can affect the liver, the immune system, cause inflammation (leading to pain), brain fog, lowered immune system and more.

In summary the damaged gut lining does not just affect our digestion, but can cause lots of other problems all round the body. Once again thank you to Dr Natasha Campbell-Mcbride for her book Gut and Psychology Syndrome, which helped me to understand what happens in our gut.

A Healthy Gut

This post is going to get a bit technical about the biology of our guts.  I will attempt to explain what goes on in a healthy gut. My next post will explain what happens when our gut is not working properly (most people with CFS/ME have digestive problems – often diagnosed as Irritable Bowel Syndrome).  I share this information because I think it will help you to understand why I am following the diet that I am.

I credit Dr Natasha Campbell-McBride and her excellent book Gut and Psychology Syndrome for my understanding of this topic.  She is a practising doctor and her book is thoroughly researched, and includes a 17 page list of “selected” references.  Her explanations of what goes on in the gut and how this links to the brain were enlightening to me.


Our gut is inhabited by millions of microbes, this is a symbiotic relationship where neither party can live without the other. Gut flora can be divided into 3 main types:

  1. Essential or Beneficial Flora – the most numerous in a healthy individual and the most important group
  2. Opportunistic Flora – in a healthy person their numbers are limited and tightly controlled by the beneficial bacteria
  3. Transitional Flora -generally ingested with food.  In a healthy gut these pass through without doing any harm, but if the beneficial bacteria is damaged they can cause disease.

Natural Barrier

The whole length of our digestive tract is coated with bacteria, providing a natural barrier against undigested food, toxins, parasites and pathenogenic micro organisms we ingest.  If this protective barrier gets damaged, the gut wall suffers.

Our bacterial barrier can produce anti-biotic, anti-viral and anti-fungal like substances and they can engage the immune system to fight invaders.  They also produce acid ensuring the pH near the wall of the gut is very uncomfortable for “bad” microbes.

Our indigenous gut flora is also good at neutralizing the toxins produced by pathogenic microbes and that we ingest with food.

Digestion and Absorption

The healthy flora on the gut wall are designed to take an active role in digestion and absorption.  They can digest proteins, ferment carbohydrates and break down lipids (fats) and fibre.  By products of bacterial activity in the gut are very important in transporting minerals, vitamins, water, gases and many other nutrients through the gut wall into the bloodstream.

Providing Nourishment

Healthy gut flora provide a major source of energy and nourishment for the cells lining the digestive tract.  The bacteria digest the food converting it into useful, nourishing substances for the gut lining.  It is estimated that the gut lining gets 60-70% of its energy from bacterial activity.

Our bacteria also produce various nutrients and vitamins, namely vitamin K, pantothenic acid, folic acid. Vitamins B1, B2, B3, B6 and B12, as well as some amino acids.

Renewal of Cells

Cells in the gut lining have to work very hard digesting food, and hence need to be young and in good shape.  The gut is constantly producing new cells and shedding old cells in a process of renewal.


Fibre cannot be digested by a human gut without the help of beneficial bacteria.  In a healthy gut fibre is broken down by bacteria to provide nutrients which feed the gut wall and the rest of the body.  They also activate the fibre to take part in water and elecrolytes metabolism, recyle bile acids and cholesterol and other stuff.


If you’ve made it this far – congratulations, especially if you have CFS/ME.  I normally try and keep my posts quite short so they’re not too taxing for those with brain fog, but every so often I feel the need to write a more in depth post.

As you can see our guts (and the bacteria residing there) provide many essential functions, so if we want to improve our health then they are a key part of the equation.  In my next post I will attempt to explain what happens when our gut is damaged.