NHS diet advice

[Jon Mors]

Hi,

Our 7 year old son was diagnosed a few months ago with T1. We are puzzled by the diet advice provided by the NHS, which is basically to eat whatever you want and adjust insulin accordingly. This seems very '1950s' to me. I can understand why they want to keep it simple but we are good cooks and even before this diagnosis we were healthy eaters and are thankfully able to afford to eat well. We are concerned that the NHS might pull us up on following a low carb diet (inspired by De Beers book). Any advice on how to manage the NHS relationship? We hope they will just come to trust us in time, but aren't banking on it so are circumspect about what we tell them. For what it's worth the low carb diet appears to be doing wonders and his glucose is largely within the normal range.

Thanks, JM

 

[In Response]

If you eat low carb as a family, there should be no problem.
If you are feeding your 7 year old son a different diet because he has diabetes, you risk further issues and a hatred of diabetes which could lead to rebellion.
In my 20 years of experience with Type 1 eating a "normal" healthy diet with the majority of my meals home cooked, dosing insulin appropriately has meant I live a very healthy life with absolutely no complications.
I tried low carb for a while and found it much harder as I had to calculate insulin to protein ratio which is different for each different type of protein. So diabetes took over more of my life and I couldn't do (and eat) what I wanted.

This has nothing to do with a 70 year old understanding of Type 1. It is based on advice from DSN, dietitian, books, fora and personal experience. Plus, using modern tools and technology such as a CGM makes insulin dosing so much easier.

 

[AndBreathe]

Hi,

Our 7 year old son was diagnosed a few months ago with T1. We are puzzled by the diet advice provided by the NHS, which is basically to eat whatever you want and adjust insulin accordingly. This seems very '1950s' to me. I can understand why they want to keep it simple but we are good cooks and even before this diagnosis we were healthy eaters and are thankfully able to afford to eat well. We are concerned that the NHS might pull us up on following a low carb diet (inspired by De Beers book). Any advice on how to manage the NHS relationship? We hope they will just come to trust us in time, but aren't banking on it so are circumspect about what we tell them. For what it's worth the low carb diet appears to be doing wonders and his glucose is largely within the normal range.

Thanks, JM

Jon, to be honest, I would take the NHS mantra to be continue to live your normal lifestyle where eating is concerned.

I'm a long term low carber, so I appreciate beneficial it can be.

 

[Jon Mors]

Thanks very much for you replies. To be clear though, the NHS are NOT saying continue with your normal diet. They are saying 'include starchy carbs', i.e. do not do a low carb diet but include pasta, rice, potatoes. We have tried to give these but that led to his sugar level spiking. We will therefore go low carb as a family. Indeed, we have already started and everybody is happy with it. We already eat lots of vegetables and meat so cutting out the carbs hasn't been that noticeable. My son is definitely getting enough calories, vitamins etc.

My question was not about the diet, but whether the NHS has any power over us regarding the diet, i.e. somehow forcing us to change his diet against our will.

Thanks

 

[bulkbiker]

Thanks very much for you replies. To be clear though, the NHS are NOT saying continue with your normal diet. They are saying 'include starchy carbs', i.e. do not do a low carb diet but include pasta, rice, potatoes. We have tried to give these but that led to his sugar level spiking. We will therefore go low carb as a family. Indeed, we have already started and everybody is happy with it. We already eat lots of vegetables and meat so cutting out the carbs hasn't been that noticeable. My son is definitely getting enough calories, vitamins etc.

My question was not about the diet, but whether the NHS has any power over us regarding the diet, i.e. somehow forcing us to change his diet against our will.

Thanks

Why would you tell them.. it's up to you and your family what you eat.

 

[Jon Mors]

We were asked to use mylife app and NHS can see exactly how much carbs we give him.

 

[bulkbiker]

We were asked to use mylife app and NHS can see exactly how much carbs we give him.

No way would I ever share my way of eating with the NHS via an app.
They are profoundly unaware of what healthy eating is.

 

[Resurgam]

I brought up my children without all the high carb foods which are 'so healthy' - my son is a foot taller than me, and the family are just awaiting the arrival of their 6th child - I mean - it might be a bit scary if everyone gave up the high carb foods and lived like us but things would certainly be lively.

 

[EllieM]

@Jon Mors
You might find the Typeonegrit facebook group helpful, I believe there is discussion there are about how much to tell your team.

I can see the point of the team being in the loop, as they are in charge of insulin dosing etc. Is your son on a pump?

 

[In Response]

If you are finding your son’s levels are spiking when he eats higher carb meals, his insulin dose is wrong not his diet.
You may chose a lower carb diet as a family to make insulin dose calculation easier (but remember you will need to also calculate insulin dose and timing for protein which is more complex than carbs) but few kids eat all their meals all the time with their family.

 

[Ushthetaff]

I’ve had diabetes long enough to remember when you couldn’t eat anything in fact it’s was a nightmare, so since they brought in the Bolus/ Basel regime eating “ normally” is probably one of the best advances in diabetes management , I wouldn’t worry about the NHS telling me what to eat and they certainly won’t determine what I eat , Everyone’s diet is different as we all like different th8ngs , if you follow a diet which suits you that’s fine ! You will find that different things like pasta don’t follow the same rules s other Carby foods , and that’s the challenge finding what affects you , it doesn’t happen overnight , just carry on eating what you like and adjust your diabetes around it not the other way around

 

[Jon Mors]

Thanks very much all for your advice and support.

When we give starchy carbs like pasta we do see a spike in glucose above the safe range, but it then falls back down within the safe range. If we gave more insulin the sugar level would come down too much.

We'll continue with low carb as it seems to be working well and nobody (including my non-diabetes child) seems to mind. As long as we avoid starchy carbs the glucose stays within 4-8 all day.

My son isn't on a pump but we do use an app to log meals and dosage, and our diabetes nurse can see that. We will cease using it in time (no point alienating the nurses from the get go).

There is absolutely no way we are going to take their diet advice re starchy carbs, so I guess my question is whether you deem it likely that will lead to conflict and if so how to manage it. As he is a child the situation is a bit different to when you are an adult, as they feel they have a duty of care to the child that goes above their duty to us as parents.

Thanks for the pointer to the Type1grit group. We'll check it out.

Jon

 

[bulkbiker]

Thanks for the pointer to the Type1grit group. We'll check it out.

If you need some NHS support there is also Dr Ian Lake a Type 1 who follows a ketogenic diet to great effect.. he's also a lovely guy.

https://type1keto.com

 

[michita]

Hi Jon

I am low carbing type 1. I don't eat starchy carbs.

I had some stressful time when I was diagnosed with NHS doctors and nurses after being too upfront about wanting to follow low carb diet. Their reaction was very negative.

My strategy nowadays is not mention low carb diet to them. If asked i say i am on moderate carb diet and be vague about details.

 

[Jon Mors]

Thanks BulkBiker (love your avatar by the way; suspect we are of a like mind) and Michita.

We'll do our best and be coy with them. Apparently his cholesterol was a bit high and they are preparing a diet plan. I know they are just doing what they know but that sounds ominous and it made my blood boil a bit. I guess we'll do the passive aggressive thing and smile and go 'yeah yeah' and then ignore them.

Ultimately it's hard to see child services taking him away to fill him full of toast and cheerios (although given how society has moved in the last few years this is less hard to envisage than it was, sadly).

Jon

 

[EllieM]

We'll do our best and be coy with them. Apparently his cholesterol was a bit high and they are preparing a diet plan.

I suggest you ask for a full breakdown of levels, though personally I'd want to see some research on what cholesterol levels should be in children before I worried.

As for the low carb diet, I do agree with @In Response that you may need to be slightly careful about the low carb route. Yes, it's fine if you're eating it at home as a family, but it's worth knowing how to dose when he's at social events with friends. You don't want to ignore the psychological aspect of having forbidden foods that he isn't allowed to eat because he's diabetic.

That 7 year old will be a teenager all too soon, and both starving (teenage growth spurt) and potentially rebellious (typical teenager).

Good luck.

 

[Marta3]

Hello, I really dont know how you are doing it with low carb and children. My son (11) is doing so much sport that without starchy carbs he would be just going low all night long. Yesterday after playing rugby at school and football in the evening he ate lasagne (we gave him less insulin because of sport) for dinner and he still woke up low this morning.

 

[RichardPTS]

Hi
As a parent of an 8 yr old T1 diagnosed in 2020, but also as an NHS hospital worker, I would do 3 things:
1. Let the DSN/consultant know you’ve heard what they’ve said, by repeating it back to them in the consultation and perhaps emailing them after with a summary of how you’re getting on in general, which references what they’ve said. That way you don’t get stuck in the frustrating cycle of them saying the same thing time and time again and you silently nodding but disagreeing, but them thinking you’re overwhelmed and need to come back to it. If they know you’ve heard, you can move on to 2.
2. Acknowledge that you have a low carb diet and why, but ask that you speak to the dietician to get specific advice. From my experience, this allows the tension to go elsewhere - to your relationship with the dietician- and then you can openly talk about all these things. The dieticians are then much more nuanced and less dictatorial because you know what you’re talking about and can have a professional to professional discussion (between you and them).
3. If you do have to defend your position, point out that you want to minimise change to your child and while some may erroneously switch to low carb to ‘help’, you were already low carb before all of this. And there are of course books by professionals with T1 who advocate low carb, so you can cite them too.
4. Smile and lot and complement how much you appreciate their help and support, even if you don’t feel it. It helps everyone liking each other and you become friends with them, which is definitely helpful

 

[RichardPTS]

Forgive me if the 4th sounds patronising- I didn’t feel like smiling much or complimenting anyone for about the first 6 months!

 

[Jon Mors]

Thanks all for your advice. Some good tips here. Definitely need to work on my smiley face.

Sorry for not logging in to say thanks earlier - life's been hectic with this and other things.