Newly diagnosed Prediabetic - with mobility issues / spinal CSF leak

[shellmcc04]

Hi all

Recently diagnosed Prediabetic (A1C is 42 after being at 40-41 for the last 4 or 5yrs), I have PCOS and struggle daily with upright function due to a chronic spinal CSF leak (long story short, a defect in the lining of my brain & spine that causes CSF to leak at a point in my spine, my brain doesn’t get the lovely cushioning effect of fluid so I have limited upright time and going through many medications / invasive scans to manage this until my defect is found & surgically repaired). I am limited to walking best part of 20-30mins before I have to lay down and twisting, lifting, exertion is banned by my neurologists (which breaks my heart as circa 5/6yrs ago I loved exercising). I knew that the Prediabetic diagnosis would be in my future with PCOS but not at the age of 41.
My diet is currently as follows - truthfully I didn’t think it was that bad (but I can see after research there are a LOT of hidden & simple sugars there) - but I cannot do exercise, I cannot go to the gym to try to spare my brain the pain & ill effects afterwards. The advice on NHS website compared with advice from individuals on various forums seem to contradict each other (NHS pushes for basing diet on whole grains, starches and fruit & veg - whereas I’m seeing many folk advocating for keto / no carb / low carb just meat, dairy and veg), I am struggling to know what is right to do. Am I entitled to ask for metformin to help improve my bloods from my GP or do they push for diet/lifestyle changes first? I cannot take GLP’s as they slow CSF production in the brain and I desperately need to hang onto as much CSF as possible. I just got told to “reduce my sugars” and not much else by an NHS diabetes dietician and they didn’t seem to understand my issue trying to balance lifestyle changes with a rare condition like a CSF leak:

Previous Diet
Breakfast: Porridge, no sugar almond milk, topped with half a banana, tea with semi skimmed milk (no sugar)
Snack: Low-cal crisps like Pom bears or a KIND nut cereal bar, Coffee w Semi skimmed milk or a skinny latte
Lunch: Scrambled eggs x2, 1-2 Slices of White Toast, Butter, Tea with semi skimmed milk or Diet Coke
Snack: Fat free Greek Yog, chopped Strawbs or mixed berries
Dinner: Roasted Chicken leg, steamed mixed veggies, Gravy made up from granules with water, Mashed potato (or just veggies mentioned above)
Dessert: Few plain rich tea Bics, Tea or a Lindahls Choc Protein Pudding

As mentioned, I can see lots of hidden sugars after really looking at what I was eating. I’ve switched out white toast for 1 slice wholemeal (from those little 400g loaves), changed to full fat Greek yoghurt, switched crisps to handful mixed nuts (omitted the KIND bars, bananas biscuits for now) and switched to just americano with a little semi skimmed milk. I hope this is a step in the right direction but truthfully I don’t know - it might be totally wrong, so welcome feedback for a newbie.
I feel quite deflated / sad as I wasn’t “this person” many years ago and I had my PCOS in control with regular exercise, the combined oral pill and now (following my CSF leak), I can’t take the combined pill anymore to regulate my hormones, can’t exercise and struggle to stand / be upright let alone going to the gym. I doubt very much there will be anyone on this forum with both a CSF leak and diabetes / prediabetes, but goodness if there is, I would be so grateful to hear from you

Thanks for reading if you got this far xx

 

[Leadinglights]

Hi all

Recently diagnosed Prediabetic (A1C is 42 after being at 40-41 for the last 4 or 5yrs), I have PCOS and struggle daily with upright function due to a chronic spinal CSF leak (long story short, a defect in the lining of my brain & spine that causes CSF to leak at a point in my spine, my brain doesn’t get the lovely cushioning effect of fluid so I have limited upright time and going through many medications / invasive scans to manage this until my defect is found & surgically repaired). I am limited to walking best part of 20-30mins before I have to lay down and twisting, lifting, exertion is banned by my neurologists (which breaks my heart as circa 5/6yrs ago I loved exercising). I knew that the Prediabetic diagnosis would be in my future with PCOS but not at the age of 41.
My diet is currently as follows - truthfully I didn’t think it was that bad (but I can see after research there are a LOT of hidden & simple sugars there) - but I cannot do exercise, I cannot go to the gym to try to spare my brain the pain & ill effects afterwards. The advice on NHS website compared with advice from individuals on various forums seem to contradict each other (NHS pushes for basing diet on whole grains, starches and fruit & veg - whereas I’m seeing many folk advocating for keto / no carb / low carb just meat, dairy and veg), I am struggling to know what is right to do. Am I entitled to ask for metformin to help improve my bloods from my GP or do they push for diet/lifestyle changes first? I cannot take GLP’s as they slow CSF production in the brain and I desperately need to hang onto as much CSF as possible. I just got told to “reduce my sugars” and not much else by an NHS diabetes dietician and they didn’t seem to understand my issue trying to balance lifestyle changes with a rare condition like a CSF leak:

Previous Diet
Breakfast: Porridge, no sugar almond milk, topped with half a banana, tea with semi skimmed milk (no sugar)
Snack: Low-cal crisps like Pom bears or a KIND nut cereal bar, Coffee w Semi skimmed milk or a skinny latte
Lunch: Scrambled eggs x2, 1-2 Slices of White Toast, Butter, Tea with semi skimmed milk or Diet Coke
Snack: Fat free Greek Yog, chopped Strawbs or mixed berries
Dinner: Roasted Chicken leg, steamed mixed veggies, Gravy made up from granules with water, Mashed potato (or just veggies mentioned above)
Dessert: Few plain rich tea Bics, Tea or a Lindahls Choc Protein Pudding

As mentioned, I can see lots of hidden sugars after really looking at what I was eating. I’ve switched out white toast for 1 slice wholemeal (from those little 400g loaves), changed to full fat Greek yoghurt, switched crisps to handful mixed nuts (omitted the KIND bars, bananas biscuits for now) and switched to just americano with a little semi skimmed milk. I hope this is a step in the right direction but truthfully I don’t know - it might be totally wrong, so welcome feedback for a newbie.
I feel quite deflated / sad as I wasn’t “this person” many years ago and I had my PCOS in control with regular exercise, the combined oral pill and now (following my CSF leak), I can’t take the combined pill anymore to regulate my hormones, can’t exercise and struggle to stand / be upright let alone going to the gym. I doubt very much there will be anyone on this forum with both a CSF leak and diabetes / prediabetes, but goodness if there is, I would be so grateful to hear from you

Thanks for reading if you got this far xx

Welcome to the forum
You are only on the first point of prediabetes and to be honest your menu doesn't look too bad but things like bananas and potatoes look to be the main offenders though reducing the snacks and having more filling meals with protein and healthy fats.
Exercise does not have to be going to the gym but walking as much as you are able is good exercise and there are seated exercises in the NHS website which people with mobility issues can find useful.
This link may give you some more ideas for a few menu changes, you will see that unless you need to for other health reasons low fat is not needed. https://lowcarbfreshwell.com/

 

[Proud to be erratic]

Welcome to the forum @shellmcc04. I've read this far ..... alas I'm the wrong type of D to be able to advise very much to help you, I'm afraid. But there are many others who will be along in due course. My tiniest of thoughts was that if you are happy with full fat yoghurt would you also be happy with full fat milk. The higher the fat content, the lower the carb content! So you could have slightly more coffee with full fat milk; but the carb reduction is pretty small in the wider scheme of things.

 

[Inka]

Welcome @shellmcc04 🙂 Sorry to hear about your CSF leak - that sounds very difficult for you. I really hope they can fix it soon.

You could certainly ask for Metformin if you can tolerate it. It can help PCOS too, I understand. Your diet doesn’t look dreadful. If I were you, I’d look at places to cut a few carbs - which is what it sounds like you’re doing anyway. So, drop the banana, crisps, biscuits and Kind bars, look at the portion size of your mashed potato, etc

 

[shellmcc04]

Welcome @shellmcc04 🙂 Sorry to hear about your CSF leak - that sounds very difficult for you. I really hope they can fix it soon.

You could certainly ask for Metformin if you can tolerate it. It can help PCOS too, I understand. Your diet doesn’t look dreadful. If I were you, I’d look at places to cut a few carbs - which is what it sounds like you’re doing anyway. So, drop the banana, crisps, biscuits and Kind bars, look at the portion size of your mashed potato, etc

Thank you so much for the kind comment and suggestions - I feel better for reading and seeing that I am heading in the right direction. Yes definitely will do re potatoes (which breaks my heart as my family is scouse / Irish so we do love our potatoes but needs must!). Is there much scope on switching up to sweet potatoes as there seems to many folk against it / for it - I suppose it depends on the individual. My GP said he wants to retest in 3 months so I’m hopeful my efforts can make a difference to my A1C x

 

[Inka]

You could try sweet potatoes. They’re supposed to be healthier. I’m Type 1 so take insulin, but I find them kinder to the blood sugar. It does depend on the individual though and, again, watch portion size. You could also try something like mashed celeriac.

You’ve got a lot to deal with. Don’t make yourself miserable with massive changes. You might well find some small, sustained changes make a big difference.

 

[Drummer]

Hello @shellmcc04 and welcome to the forum.
If you were a full on type two then your entire way of eating would be better avoided, as it is carbohydrate in general which is a problem for those like me - as it had been all my life but the 'healthy' way to eat the NHS advises is so entrenched it can't be argued against until it becomes clear is is totally inappropriate for those who cannot deal with carbohydrate in the quantities encountered in the modern diet.
I am on a low carb forum for weightloss and it can be rather amusing to read the reports of sudden pregnancies after PCOS responds to low carb - usually the natural fats involved restore hormone balances too. We are of course delighted for them but their shock and amazement comes over all too clearly, bless 'em.
If you were to cut back on other sources of carbs, with you not being a long way into the diabetes range I am sure you could manage some potato - the porridge is an odd one, some people find they can cope with it and others (like me) get a spike in glucose which doesn't match the carb content. I find the same thing with peas and beans.
I substitute swede or cauliflower for potatoes, and find that swede in bubble and squeak would be my choice anyway. I cook a swede in a pressure cooker to soften it for mashing, or cube it for a stew.

 

[shellmcc04]

Hello @shellmcc04 and welcome to the forum.
If you were a full on type two then your entire way of eating would be better avoided, as it is carbohydrate in general which is a problem for those like me - as it had been all my life but the 'healthy' way to eat the NHS advises is so entrenched it can't be argued against until it becomes clear is is totally inappropriate for those who cannot deal with carbohydrate in the quantities encountered in the modern diet.
I am on a low carb forum for weightloss and it can be rather amusing to read the reports of sudden pregnancies after PCOS responds to low carb - usually the natural fats involved restore hormone balances too. We are of course delighted for them but their shock and amazement comes over all too clearly, bless 'em.
If you were to cut back on other sources of carbs, with you not being a long way into the diabetes range I am sure you could manage some potato - the porridge is an odd one, some people find they can cope with it and others (like me) get a spike in glucose which doesn't match the carb content. I find the same thing with peas and beans.
I substitute swede or cauliflower for potatoes, and find that swede in bubble and squeak would be my choice anyway. I cook a swede in a pressure cooker to soften it for mashing, or cube it for a stew.

Thanks so much for the tips, I’m hopeful these help - haha don’t worry I do not want kids and there’s no chance of “accidents” happening if my A1C drops 🙂

I hate cauli, don’t mind swede but my husband isn’t a fan - I’ll figure something out to take its place - I’m quite found of greens, carrots, tenderstem broccoli and sweet potato (but I know the sweet potato is approach with caution). Luckily I don’t like pasta and I don’t really eat rice, it’s the spuds that’ll break my heart the most. I meant to add I’ve been adding a couple of tsps of chia seeds to my porridge of a morning too

 

[Leadinglights]

Thanks so much for the tips, I’m hopeful these help - haha don’t worry I do not want kids and there’s no chance of “accidents” happening if my A1C drops 🙂

I hate cauli, don’t mind swede but my husband isn’t a fan - I’ll figure something out to take its place - I’m quite found of greens, carrots, tenderstem broccoli and sweet potato (but I know the sweet potato is approach with caution). Luckily I don’t like pasta and I don’t really eat rice, it’s the spuds that’ll break my heart the most. I meant to add I’ve been adding a couple of tsps of chia seeds to my porridge of a morning too

You could try butternut squash instead of potatoes lower carb than sweet potatoes which are pretty well the same as normal potatoes. Quite a few other veg you could try, cabbage, courgette, mangetout or sugarsnaps, peppers, and all the salad things,
Some people find porridge is a problem and can push up blood glucose so have something like full fat Greek yogurt with berries and seeds or nuts. I have a low carb granola on mine, M &S grain free fruit and nut or Keto Hana which are only about 9g carbs per 100g.

 

[shellmcc04]

You could try butternut squash instead of potatoes lower carb than sweet potatoes which are pretty well the same as normal potatoes. Quite a few other veg you could try, cabbage, courgette, mangetout or sugarsnaps, peppers, and all the salad things,
Some people find porridge is a problem and can push up blood glucose so have something like full fat Greek yogurt with berries and seeds or nuts. I have a low carb granola on mine, M &S grain free fruit and nut or Keto Hana which are only about 9g carbs per 100g.

Ooh thank you I shall have a look at the M&S granola - I do like Greek yoghurt granola and berries in the warmer months

Thank you I’m screenshotting all these suggestions 🙂 more than anything I want to be realistic, I don’t want to go to absolute extremes and end up with disordered eating or just overwhelmed & giving up. It’s hard with back n forth to hospitals so often grabbing a banana / coffee is my staple

 

[Leadinglights]

Ooh thank you I shall have a look at the M&S granola - I do like Greek yoghurt granola and berries in the warmer months

Thank you I’m screenshotting all these suggestions 🙂 more than anything I want to be realistic, I don’t want to go to absolute extremes and end up with disordered eating or just overwhelmed & giving up. It’s hard with back n forth to hospitals so often grabbing a banana / coffee is my staple

If you need something to grab then the Nature Valley Protein bars are only 12g carbs per bar or shop own or KIND protein bars.

 

[shellmcc04]

If you need something to grab then the Nature Valley Protein bars are only 12g carbs per bar or shop own or KIND protein bars.

Oh see I was having the KIND protein bars but I thought they might be a bad choice - I usually go for the dark choc & salted nuts one (I read somewhere on another thread if the sugars per 100g is over 4g then it’s not good to have - or I might be getting muddled!). I’ve not tried NV bars I’ll look them up, thank you 🙂

 

[Leadinglights]

Oh see I was having the KIND protein bars but I thought they might be a bad choice - I usually go for the dark choc & salted nuts one (I read somewhere on another thread if the sugars per 100g is over 4g then it’s not good to have - or I might be getting muddled!). I’ve not tried NV bars I’ll look them up, thank you 🙂

Make sure you are looking at the carbohydrates not just the sugar as you may be misled.
I think with something like the protein bars is how many carbs in the bar you are going to eat and if it is instead of a meal or as an addition to a meal.
Careful to make sure they are the Protein ones as others will be high carb.

 

[shellmcc04]

Make sure you are looking at the carbohydrates not just the sugar as you may be misled.
I think with something like the protein bars is how many carbs in the bar you are going to eat and if it is instead of a meal or as an addition to a meal.
Careful to make sure they are the Protein ones as others will be high carb.

Of course thank you so much - I will definitely check carbs too (I think I see 15g carbs suggested for snacks and KIND protein bars are 7.2g)

 

[everydayupsanddowns]

I’ll figure something out to take its place

If you’ve not tried it yet, have a go at one of those knobbly alien-looking celeriacs. Some T2 members here have great success in blends and mixes, eg 75:25 spud/celeriac, or 50/25/25 spud/cauli/celeriac. Even though you dislike cauli on its own, you may find is disappears in a buttery peppery blended mash and you can hardly tell its there.

You are just on the lowest rung of the at risk range, so a few modest changes are likely to go a long way to steering you away from a diabetes diagnosis. I certainly can’t see the need for you to even consider reducing carbs so far as to approach keto levels. Aiming for somewhere around 130g of carbs a day should give you plenty of flexibility, and mean you can adapt your current way of eating rather than having to start from a blank sheet. I think I’d find that easier. To make smaller incremental changes over a period of time.

 

[shellmcc04]

If you’ve not tried it yet, have a go at one of those knobbly alien-looking celeriacs. Some T2 members here have great success in blends and mixes, eg 75:25 spud/celeriac, or 50/25/25 spud/cauli/celeriac. Even though you dislike cauli on its own, you may find is disappears in a buttery peppery blended mash and you can hardly tell its there.

You are just on the lowest rung of the at risk range, so a few modest changes are likely to go a long way to steering you away from a diabetes diagnosis. I certainly can’t see the need for you to even consider reducing carbs so far as to approach keto levels. Aiming for somewhere around 130g of carbs a day should give you plenty of flexibility, and mean you can adapt your current way of eating rather than having to start from a blank sheet. I think I’d find that easier. To make smaller incremental changes over a period of time.

Thanks so much for the tips - truthfully I’ve never tried celeriac so maybe time for some experimenting 🙂 that’s such a comfort to read, small sustainable changes are definitely better (for me)! As a bonus where I’ve reduced carb intake I’ve definitely noticed much less bloating, so that’s good

 

[helli]

I read somewhere on another thread if the sugars per 100g is over 4g then it’s not good to have

I have no medical training (and I do not have type 2 diabetes) but I am still going to add my 2p worth here.
I find these strict rules tough and do not take into consideration things like the effect of additional fat (in the nuts and chocolate in KIND bars, for example) have in increasing the length of time taken to digest and, the longer your body has to process it.
If you want to invest in a glucose meter, you could find out what are your nemesis and what you body can tolerate.
Some people sign up for the 2 week free trial of Libre to get an insight into the workings of their body. This is free for people with diabetes but I do not know about prediabetes - it maybe worth checking out if you have a smart phone.

The other thing to remember is that we are all different. For example, some people find that porridge has little impact on their BG whereas other find that it can shoot their BG into the stratosphere.
And another thing to remember is portion size - a whole Easter egg contains a lot of sugar whereas as single square in not very much. So, instead of cutting out your beloved potatoes, how about having a smaller portion.

I think that's all for now ... before it turns into my equivalent of Monty Python's Spanish Inquisition.