[BTW this is a slightly different text style. Is it too small for you?]
My latest self-experiment is relevant to everyone, not just Spoonies/people with ME (pwme). You could get the whole family to join your version of this mini-experiment. The upside is you get to eat sweet things in the name of science! The downside is you need to prick your finger to get blood sugar readings.
Although I haven’t finished it yet, I hope it’s not an exaggeration to say that the information I’ve learnt already has likely redirected me from a road to diabetes and at the same time put me on a street with many more sweet-treat outlets. Bizarre but read on…
Large Personalised Nutrition Study
This home-hacking of blood sugar is inspired by a large Israeli study ((1)click link) into individual differences in blood glucose response after eating. Some of their results are quite startling and challenge generally accepted wisdom about universal glycemic index charts. The reason seems to be that our microbiome varies and interacts differently with food. We can hack our microbiome very quickly by knowing this personalised information, creating a personal diet, increasing beneficial bacteria and reducing unhelpful bacteria. This is useful in the general population for counteracting diabetes and obesity.
A quick explanation is this cartoon they made:
This TV programme is how I found out about it and includes a more thorough explanation watch http://www.bbc.co.uk/programmes/p03gqpjm/player and for their results see http://www.bbc.co.uk/programmes/p03gqssd/player (not embedding properly here).
Glucose and ME
I’m particularly interested in these ideas because there does seem to be something odd about controlling blood glucose in my ME, that isn’t the same as diabetes. It is a commonly held view among pwme that refined sugar is bad and avoiding blood glucose fluctuation is a useful strategy. In response to this I have taken advice from a ME specialist nutritionist, and for the last 3 years I have had an extreme diet when it comes to sugar. I cut out refined sugar and also restrict natural sugars (hardly any fruit, honey, maple syrup). Since I have a sweet tooth this feels restrictive. I want to know if it is worth it.
In terms of my previous blood glucose tests, I have been asked to get random tests re-tested a couple of times because doctors consider them too high. When I have a fasting test I don’t come out as diabetic. In other words, there is possible pre-existing evidence of a problem processing glucose but it isn’t straightforward diabetes.
The area is under-researched (like most aspects of ME) but there’s maybe evidence of a biological problem, rather than this being just a fad. For example, abnormal glucose uptake in muscle cells (2). There is also some evidence that simply restricting dietary sugar (and yeast in this case) doesn’t make any difference in ME/CFS (3).
Key Points from the Large Study
Some key points I picked up from the Personalised Nutrition study are:
- People can have opposite response to the same food, so that bananas cause blood sugar spikes for one person but they can eat cookies with no spike. The next person can be vice versa:
- 2. When one person repeats the test with the same food the results are very similar. This probably means that repetition is a waste of time/resources.
- Some people are ‘Carb Sensitive’ and the amount of carbohydrate in a meal correlates with their post-meal glucose (Post-Prandial Glucose Response or PPGR). For other people the quantity doesn’t matter.
- For some people they can bring down the PPGR by increasing the ratio of fat in a meal. For other people this doesn’t work.
- Fibre increases PPGR BUT higher fibre the day before can lead to lower PPGR.
- Microbiome changes are quick and 1 week of avoiding personal blood sugar spikes can change it for the better.
- Changing the microbiome in this way may help me lose weight and prevent diabetes in the future.
I am in the process of devising an at-home, low budget version of this experiment that will work without access to microbiome testing, continuous glucose monitoring or algorithms. I’m sort of making it up as I go along and have no expertise in nutrition or diabetes, so you might be able to offer me further tips or use my makeshift plan as a starting point for your version. Please let me know if you do this at home too and what you do differently.
This process I’m doing should take 2-3 weeks, but could take any amount of time you like. The glucose testing is just to work out your diet, it isn’t necessary in the long-term and shouldn’t become obsessive.
Optional 1: You may find it beneficial to also record your ME symptoms before you make changes, while you’re testing higher sugar foods and when you’ve improved your diet. This will give a sense of whether it is immediately improving your health. I’m using the ME-CFS Assistant app for this (and will be able to see graphs).
Optional 2: if you are prepared to throw more money at this than I am you could do a stool sample before and after the diet change to check that you really have improved your microbiome. There may even be research studies near you who would do this for free (if they’re after people’s poo!). Instead I’m using symptoms and weight as a proxy for this.
This is what I’ve decided to do:
Phase 1 Observation
- Buy a Diabetes Blood Glucose Monitoring kit with roughly 50 test strips and 50 lancet spikes (probably costing a total of £20-25ish as a one off cost e.g. Amazon)
- Learn how to use the kit (I find getting a big enough blob of blood tricky)
- Take a blood glucose reading when I haven’t eaten recently, just for information
- 1 hour after I started eating a meal take my blood glucose (PPGR)
- Record this information (either on paper or using the ME-CFS Assistant app)
- Repeat this for things I usually eat (for about a week)
- If any readings are very odd repeat them as stress, exercise etc can alter it a bit
Phase 2 Experimentation
- Write the results out as a scale/list from highest to lowest. Colour code anything 7.8mmol/l or above as red, 6.95-7.7 as amber, 5.0-6.94 as green and under 5 as blue
- Can I spot any themes already?
- Is there anything I specifically want to test from this? For example, my results seem to indicate a particular problem with corn flour, while rice and rice flour is OK, so I’m testing that theory
- Record PPGR for some of the standard foods mentioned in the original experiment e.g. a whole banana (fructose sugar), ice cream (fat and sugar), cookies (carbs, sugar and fat), a plain slice of bread (carbs), 2 slices of bread (double carbs) and a slice of bread with lots of butter on (carbs with fat), or a croissant (gluten/dairy free alternatives are OK). Can compare 50g of different carbs.
- Repeat for a few things I like but taste very sweet! Yummy…
- Further test whether I’m a ‘Carb Sensitive’ person by varying the amount of carbs in one of the meals I’ve already recorded. It may make sense to halve the carb in a high PPGR meal and double the carb in another meal with good PPGR
- Further test whether I’m a ‘Fat Beneficial’ person by varying the amount of fat with carbs in one of the meals I’ve already recorded. It may make sense to double the fat in a high PPGR meal and halve the fat in another meal with good PPGR
- Test my own theories as they develop
- Add my extra results into the colour-coded scale
- Review my symptom graphs. Is there any association with blood glucose?
Phase 3 Diet Implementation
- Record weight (just for information, changes may cause weight loss)
- Decide whether I’m a Carb Sensitive and if so decide specific adjustments (eg halve pasta, avoid bread for lunch)
- Decide if adding extra fat helps lower my PPGR and work out practical strategies
- Look again at all the red items on my list. Did I make any of these amber/green by altering carb quantity or fat ratio? Or can I see a way to do this?
- Cut out any items which are still red. Depending on how drastic this is, also cut back on amber items. I have a few red items, so probably enough to start with
- Eat more green items from the list and other meals following the same principles
- Does this seem like a healthy diet in other respects (vitamins, protein, variety)? If so, start this as my new diet plan
- In the first week of the new diet take a few PPGR readings to double check that blood glucose is on a downward trend from previous testing, or more stable
- Stop taking blood glucose readings but continue symptom monitoring
- Monthly reassess if helps blood glucose trend, weight, IBS and other symptoms
Results so far
At the moment I’m part way through the Experimentation phase, so I’ll need to write a follow-up post with full results, diet changes and outcomes from diet changes.
blood glucose list pdf (NB this is personal to me, so don’t change your diet to it!)
Speculation so far:
- Our spaghetti bolognese is almost identical to our chilli con carne (minus kidney beans, chilli powder and swapping rice/pasta) but chilli is the lowest full meal and spag bol the highest. Rice makes the difference?
- Flour seems to be a problem for me. Probably especially cornflour.
- Rice is a good carb for me to eat (other people may get sugar spikes from this).
- I seem to be OK with fructose, fruit based sweetness.
- Ella Woodward style recipes come out quite well in my tests considering they taste very sweet.
- I can also eat some refined sugar and stay in the green zone. This is surprising.
- The sweetness of food bears little relationship to blood glucose for me.
- Overall I think I am Carb Sensitive but not helped by fat. This needs some further testing.
Tests left to do: banana on its own, 2 slices of bread, slice of bread with butter, varying quantity of pasta, varying amount of fat.
Likely Diet Changes (to be confirmed)
- cut out/back flour based food, adjusted portions
- eat more rice meals
- eat slightly less potato meals
- reintroduce healthy fruit sugars
- eat some refined sugar occasionally (e.g. social occasions)
If anyone has access to the information, it would be useful to know what ‘good diet’ the official study would recommend for me.
To be continued….
- Zeevi et al (2015). Personalized Nutrition by Prediction of Glycemic Responses. Cell l 163, 1079–1094 November 19, 2015 http://dx.doi.org/10.1016/j.cell.2015.11.001
- Brown et al (2015) Abnormalities of AMPK Activation and Glucose Uptake in Cultured Skeletal Muscle Cells from Individuals with Chronic Fatigue Syndrome http://journals.plos.org/plosone/articleid=10.1371/journal.pone.0122982
- Hobday (2008) Dietary intervention in chronic fatigue syndrome. Journal of Human Nutrition and Dietetics. Volume 21, Issue 2, pages 141–149, April 2008 http://onlinelibrary.wiley.com/doi/10.1111/j.1365-277X.2008.00857.x/full
What is healthy PPGR?
“Ranges of blood sugar for young healthy non-diabetic adults:
Fasting blood sugar: 70–90 mg/dl (3.89–5.00 mmol/l)
One hour after a typical meal: 90–125 mg/dl (5.00–6.94 mmol/l)” blog
It can be normal to be up to 7.8mmol/l up to 2 hours after a meal (ie don’t panic!). Over this and it could be causing some damage if you keep going over, so it’s worth taking action