Category Archives: unhelpful foods

But what about ………?

This post was prompted by a question about whether I eat potatoes and sweet potatoes, because they’re not on my foods to eat more of or foods to eat less of lists.

Those lists don’t mention every food type and I can remember questioning my nutritionist about various foods I wasn’t sure of.  As I read more about different healing diets (Paleo, SCD, GAPS, Wahls Paleo, SANE, FODMAP, Anti-Candida etc) I got confused.  The paleo diet avoided all grains and legumes, but I ate lentil soup quite often for lunch.  Would I feel better if I cut out the lentils?  Some diets recommended avoiding dairy, others encouraged eating live yogurt.  Who’s advice is right? Which one should I follow?

I think the truth is that there is no one right diet for everyone.  Some people thrive on Paleo, some don’t.  Some people swear by veganism, some people seem to feel better when they eat meat.  The problem is that when you feel awful most of the time it’s hard to know how much of that is due to the food you’re eating, and which foods you should avoid.

Actually I think all these diets have plenty in common and the differences are pretty small.  Here’s what’s common:

1. Eat lots of fresh vegetables

2. Avoid processed foods and eat real whole foods

3. Eat protein (the quantity and type of protein recommended varies)

3. Eat whole food fats

4. Avoid refined sugar

These are major common items, and for most people would be a major change to their diet.  After this there are differences, and whether you do better on one diet than another is probably down to your individual situation.  Personally I found that going paleo left me constipated and my body does much better with some legumes and whole grains.  However, there are people out there who swear by paleo, and so I presume they don’t have that problem.

Ultimately the best diet for me may differ from the best diet for you, particularly if we are sensitive/intolerant to different foods.  I suggest working on the basics and not worrying too much about the fine print.  Of course if you notice that you always feel bad after eating a certain food try eliminating it and see if you feel better without it.  We’re all different, so we all need to find our own optimum diet.



Experiments with Gluten

If you’ve been following this blog for a while you’ll know that my daughter and I follow a gluten free diet (Our experience of going gluten free), and in my last post Dairy Difficulties I talked about our recent experiments with my son, and how he appears to tolerate gluten, but have problems digesting dairy.

With the recent improvements in my health I have been considering testing whether I react to gluten by doing a gluten challenge (eating it and seeing what happens). I didn’t want to do this earlier, because I was still regularly having “bad days” and I wouldn’t have known whether any symptoms were from eating gluten, or a bad ME/CFS day. However, I am reasonably stable day to day now, so I thought I could differentiate between a gluten reaction and my everyday healthy feeling.

I’ve been waying up the pros and cons for a while, and I’ll summarise them as:

My reasons for trying gluten are:

  • I’ve never had a test that showed I was sensitive to gluten
  • I may never have had a problem with gluten, my avoidance of it may not have been part of the reason for my recovery, and I may not need to avoid it at all.
  • I may have been gluten intolerant, but my gut has now healed and I can tolerate it again.

Reasons for continuing to avoid gluten and not try it are:

  • I could be coeliac, in which case even a small amount of gluten will be doing long term damage to my body. My daughter has the gene for coeliac disease, so there is a higher than average chance of me also having this gene. My blood test for coeliac disease was negative (As was my daughter’s and son’s) but this test generates false negatives, so you can get a negative result but still have coeliac disease).  It’s also possible to have “silent coeliac disease” with no gastrointestinal symptoms.
  • I could be intolerant, and spend several hours/days feeling ill following eating gluten.

Having decided to go ahead, last Saturday evening, whilst my daughter was away (I don’t want her to experiment like this because I’m pretty sure it would not be good for her health) I had a tortilla with a normal, wheat containing wrap.

Saturday evening and Sunday morning I felt fine, however Sunday afternoon and Monday morning I was very fatigued and also light headed. It thankfully cleared by Monday afternoon, after a restful morning, but it was an unwelcome reminder of how I used to feel all the time. Unfortunately, having said that I could distinguish between the effect of gluten and ME on my body there is another variable to throw into the equation. I had my period at the same time (I should have thought of this and waited until that was out of the way to try gluten). Whilst I haven’t been affected during my period for quite a while, I have been in the past, and I know it is a natural low point of the month for many women.

I felt OK on Tuesday and Wednesday, and then had two more “bad” days on Thursday and Friday – feeling more fatigued than usual and the general malaise that it so common, yet so hard to describe.  Again I don’t know if this is related to the gluten, or perhaps I was fighting off a cold that my kids have had.

So the results of my experiment are inconclusive.  I definitely felt worse than usual after ingesting the wheat wrap, but I can’t be sure that how I felt was due what I ate.  I’ve realised that there are always other variables at play.  If I’m going to test this properly I think I need to consume gluten at every meal for a few days until either I feel ill or I remain fine. The thought of possibly deliberately making myself ill scares me. It has taken a long time to get to this state of health, and how I felt last week was a most unwelcome flashback.  For that reason I’ve decided not try this at the moment.

Additionally my son has had another run of tummy aches, so it seems dairy free is not the whole answer to his issues.  We are going back to the doctor about his symptoms, but even my husband (who is extremely sceptical about the negative effects gluten can have) has suggested perhaps we should try removing gluten again.  However, this is not something we’re going to rush into, so we’ll wait and see what the doctor says first.

What would you do in my position?



I confess. I’m a sugar addict. I gave up sugar for several months in the spring/summer of 2012 when my determination to get well overcame my desire to consume the white stuff. Then I went on holiday, slipped off the wagon and (because holidays are a relaxing time with few demands) improved. That destroyed my motivation to go back on a sugar free diet, and although I’ve had a few attempts at it since I’ve not managed to kick the habit. I’m doing my best to minimise my consumption, but I frequently succumb to some dark chocolate, or my daughter’s baking.

A sugar free diet is crucial if you are someone who is suffering from Candida or Small Intestine Bacterial Overgrowth (SIBO). It’s also an ideal for all of us. There is plenty of evidence that sugar is bad for us, and unlike some foods e.g. caffeine and red wine where there are health claims that in some way counter balance the negative effects I’m not aware of any beneficial health claims for sugar.

What’s the problem with Refined Sugar?

Whole books have been written about sugar. Since I want to keep this post fairly brief, I’ll focus on the main issues for ME/CFS sufferers:

Nutritional Value

It’s empty calories – no micronutrients, just pure carbohydrate. To heal our bodies we should be aiming for optimum nutrition from our food, refined sugar is absolutely wrong in this respect.

Blood sugar, insulin and weight gain

Sugar is absorbed into our blood stream quickly leading to a spike in blood glucose levels. Our body responds to this by releasing insulin, which reduces the level of glucose by diverting it into body tissues for short term use or storing it as fat. The surge of glucose followed by the rapid drain leaves us starved of energy, so we search for another sugar fix to bring us out of the slump. Insulin also inhibits the conversion of body fat back into glucose for the body to burn. Since high insulin levels prevent the body from burning fat if you want to lose weight it is important to keep your insulin levels low. You may have been advised to eat low GI food -this was the only nutritional advice I got from the NHS ME/CFS clinic I attended. Low GI foods break down in your digestive system at a slow, steady rate and hence do not cause such a spike in insulin levels.

Hormone Regulation

ME/CFS sufferers often have difficulty regulating their hormones, due to problems with the Hypothalamic-Pituitary-Adrenal (HPA) axis. Thus putting stress on this system, by eating lots of sugar and needing our hormones to balance is not a good idea.

Gut Bacteria

Bacteria in our gut carry out many important functions. You can read more about that in A Healthy Gut. There are many factors that can affect our bacteria, (see what causes damage to our gut). One of the factors that can have an adverse effect on our gut bacteria is Sugar. The “bad” bacteria feed on sugar and increase in number. This crowds out the “good” bacteria and can lead to a damaged gut.

My Experience

I know if I eat a lot of sugar I don’t feel good. I get shaky and weak. It’s not a nice feeling. On my 40th birthday my friends threw a small get together for me (it was all I could cope with). They baked cakes and whilst they were drinking wine, they knew I wasn’t drinking alcohol, so they had bought a selection of soft drinks for me. I was touched by the effort they had put into the evening, and whilst normally I politely decline soft drinks and stick to water I did imbibe on this occasion, along with plenty of cake (it was my birthday after all). That night I woke up at about 3 am with my heart pounding – fight or flight at its best. When I spoke to my nutritionist about this she explained it was probably due to my body trying to process the sugar – in particular my liver struggling to cope with blood so high in glucose. In simple terms my liver was struggling so the body helped by going into emergency (fight of flight mode). This experience was unpleasant enough to ensure that when I do eat sugar I usually limit the quantity and try to eat it with other foods, especially fat and/or protein which helps moderate the effect.

A way forward

If you’re eating a high sugar and high refined carbohydrate diet, don’t try and make a sudden change. Instead aim for a gradual change. Think of one thing you are going to change this week. For example, perhaps you will stop drinking fizzy pop and replace it with water and/or herbal tea, or perhaps you will swap your daily mars bar for a square of dark chocolate and an apple. As I said in increasing or decreasing it is easier to focus on what you want to increase in your diet rather than what you are decreasing.

Writing this article has made me more mindful of my own sugar consumption. I am not ready to commit to going sugar free again at the moment, but I am going to take a look at my sugar habit and think about how to reduce it further.

Should you go gluten free?

              • Bone or joint pain,
              • muscle cramps,
              • leg numbness,
              • chronic fatigue,
              • abdominal pain,
              • headaches,
              • foggy mind,
              • diahorrea,
              • weight loss,
              • eczma and rashes,
              • depression,
              • anemia,
              • behavioural changes.

This is a list of symptoms for Non-Coeliac Gluten Sensitivity (NCGS) source.  There is a lot of overlap with CFS/ME symptoms, so If, like me, you read this list and identify with several symptoms then perhaps it’s time to try cutting out gluten for a few weeks and see if things improve.

What is gluten

Gluten is a protein found in Wheat, Barley and Rye.  It is made up of two main groups of protein glutenins and gliadins.

Wheat Allergy, Coeliac Disease, Non-Coeliac Gluten Sensitivity

There are three different types of reaction to wheat proteins; Wheat Allergy, Coeliac Disease and Non-Coeliac Gluten Sensitivity (NCGS).

  • Wheat Allergy is a classic food allergy and is an adverse immunologic reaction to wheat proteins.  I won’t be discussing this further in this article.
  • Coeliac Disease is an auto-immune condition where the reaction to gluten causes damage to the small intestine.  There is a good explanation of how gluten contributes to Coeliac Disease and damages the gut at SCD lifestyle.
  • In Non-Coeliac Gluten Sensitivity consuming gluten does not cause damage to the small intestine, but there is an immune response.  People with NCGS are more likely to have non-GI symptoms such as headache, “foggy mind,” joint pain, and numbness in the legs, arms or fingers.  The symptoms can occur hours or days after gluten has been eaten source.  There seems to be some confusion in the literature as to whether people with NCGS have a damaged gut.  my understanding is that damage can be present, but it’s not caused by gluten (because that would change the diagnosis to Coeliac Disease).   This post lists the other causes damage to our gut.

More detail on the differences between these three types of reaction to wheat/gluten can be found in this paper if you’re interested. In all three conditions the immune system is activated, but in different ways.

There are tests available for Wheat Allergy and Coeliac Disease, although it’s possible to get false negatives in Coeliac Disease diagnosis.  There is currently no test that can diagnose NCGS. Therefore it will not have been excluded as part of your diagnosis of CFS/ME.

What happens to gluten in a healthy gut

Digestion of Wheat Proteins happens in two stages in healthy individuals:

1. Stomach – Digestive juices produced by the stomach wall split the proteins  into peptides.  These peptides move to the small intestine for the second stage of the process.

2. Small Intestine –In the small intestine they are subjected to pancreatic juices and then reach the intestinal wall where they are broken down by enzymes in the gut lining.  Even in a healthy gut these peptides are resistant to digestion.

What happens to Gluten in a Damaged Gut

With damaged gut flora the second stage of the digestion process does not happen, as a result the peptides get absorbed into the body and cause problems: in particular, problems with brain function and the immune system.  A damaged gut is one of the characteristics of Coeliac Disease, and can also be present, but usually to a lesser extent in NCGS.

Can I have Gluten Sensitivity if I have a healthy gut.

The simple answer is Yes.  The sources I have read here and here agree that NCGS can occur when there is no increase in intestinal permeability.  It is an immune reaction.


It is possible to have Coeliac Disease or NCGS and be unaware, because the reaction to eating gluten is sometimes delayed by several hours or days.  Given that most people eat gluten containing foods several times a day the best way to see if you react to gluten is to remove it from your diet completely for 2 weeks and see if you notice a difference.

I know first hand how daunting it is to make a major change in your diet when you are suffering from CFS/ME.  I explain in this post how our family coped with changing to a gluten free diet for first my daughter and then me.

There is plenty of clear evidence that NCGS does exist, but this does not seem to be widely known by many doctors.  If you want advice from your doctor about whether you should try a gluten free diet I suggest you first question them on their knowledge of NCGS.  If they are not aware that the condition exists and that there is medical evidence to support this, they are not in a position to give you advice about going gluten free.

Please note that I have no medical training and my recommendation in this post is based on the reading I have done and my own experience of following a gluten free diet.



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.


This post was inspired by a glass of wine on Saturday night – only my second alcoholic drink in nearly two years.

Why I Don’t Drink Alcohol

Since I got CFS/ME  in January 2012 I have avoided alcohol almost entirely.

For the first few months of illness I felt dizzy and ill most of the time, and I had no desire to add to that with a hangover.  Once I got my dizziness under control and was pacing better I decided to try a small amount of wine.  So one evening in August 2012 when my kids were staying with my sister I experimented and had one half glass.

From that experiment I discovered I was alcohol intolerant!  The next day I had the worst hangover ever, as if I’d drunk 2 bottles of wine instead of half a glass. I felt like I’d been poisoned.

That experience was enough to stop my trying alcohol again until now.

How the Body Processes Alcohol

I have picked out some highlights (relevent to CFS/ME) of what happens during alcohol metabolism from this article.

  • Alcohol is absorbed into the bloodstream through the small intestine.
  • It travels to the liver where it is converted to energy.  Whilst the liver is metabolising the alcohol it is unable to carry out other functions.
  • The liver can process 1/2 oz alcohol per hour.  Excess alcohol flows to other parts of the body.
  • Alcohol in the heart causes you to pump less blood and the blood vessels relax, causing a lowering of blood pressure.
  • Alcohol is a sedative. When it reaches your brain it slows the transmission of impulses between nerve cells that control your ability to think and move.
  • Alcohol reduces your brain’s production of anti-diuretic hormones, which keep you from making too much urine. You may lose lots of liquid, vitamins and minerals.

 What Does This Mean For Me?

  • Tests I did with my nutrtionist indicated my liver is not getting rid of toxins as it should, but is recirculating them around my body: this is probably why a small amount of alcohol had such a massive impact on me.
  • I am already eating extra salt to counteract low blood pressure, thus alcohol lowering my blood pressure is not something I want.
  • I already have brain fog, therefore I don’t want the sedative effect of alcohol dulling me further.
  • I take vitamin and mineral supplements and  I don’t want to waste them by peeing them out at a faster rate than normal.

It’s clear that the effects of alcohol are not going to help me feel better.

What happened after my drink on Saturday?

I’m pleased to report that I felt OK after my wine on Saturday night.  I think this could be because my sauna is helping me to detox, and hence my liver is better able to process the alcohol than it was.

What will my attitude to alcohol be going forward?  

It’s on my list of foods to eat less of and I intend to avoid it almost entirely, because it’s not going to help me recover and it may hinder recovery.   However, on very special occasions, if I want a drink I won’t be scared of how I’ll feel the next day, I’ll be able to imbibe if I want to.

What’s your experience of drinking alcohol and CFS/ME?


Foods to eat less of

I could have labelled this post foods to avoid, but I find the idea of never eating a certain food instantly makes me want to eat lots of it.  Most of the foods here are the usual suspects, I will be writing some posts in the coming weeks about the reasons behind avoiding these.

  • Processed foods high in fat, sugar, chemicals additives or preservatives
  • Tinned foods or juices
  • Alcohol, caffeine and fizzy drinks
  • Grains—wheat, oats and rye
  • Refined grains— white rice, white flour or pasta
  • Sugar (including honey and malt)
  • Stock cubes (use gluten free stock cubes)
  • Yeast extracts
  • Soy sauce – use tamari sauce instead
  • Smoked meats and fish
  • Pickles and relishes
  • Peanuts
  • Any food containing vinegar (e.g. Mayonnaise)
  • Chilli and very spicy food
  • Dried fruit
  • Cheese