Online dietician recommendation?

[Kuba85]

Hi. As per my post earlier this week, our 5.5yr old daughter was diagnosed with T1 diabetes this past week. We are thinking of consulting our changed family diet with a specialist to help us arrange meal plans etc. I already sent out some inquiries to those accredited by the UK Association of British Dietitians.

[edited by moderator to remove rule breach]

 

[becca59]

I have no experience re children and diet, but am intrigued by your reference to “changed family diet.”

 

[Kuba85]

So it’s early days for us.. But our initial reaction was:

- we are on this together with our daughter so will follow her with respect to adapting some healthier habits (we already eat rather organic, etc, but could still adjust some things like normal rice for brown rice, plain pasta for wholegrain pasta)

- we will try to use this as an opportunity to eat even cleaner than we have done because those habits stay with kids for life

- obviously we are also planning for none of us to have any unnecessary snacks in between our meals much like her

- online sources indicating there is a higher risk of obesity in teenagers/people using insulin. Is this even true? Does this have to be taken into account when planning meals/diet?

Basically we wanted to consult someone recommended online what is best course of action vs what we are eating now? How far do we need to adjust if at all? Is there a harm in having higher insulin injections as opposed to smaller doses - I find it odd to say “you can eat whatever you want, just add more insulin”. Where do you draw the line?

All this information is probably available online and you can experiment etc. But we are able to verify what is best and how to adjust.

*It is possible we will get some of this info from the hospital, but if someone used this sort of person before then maybe they could also comment here whether they found the process useful in the first place.

 

[ianf0ster]

Hi @Kuba85 Unfortunately the forum rules ( C12. Disclosing personal information of others without their permission) prohibit Forum members from recommend individual Dietitians or Health Care Practitioners including practices or the name of an individual HCP.

 

[Kuba85]

Ok. Apologies for breaking the rules/asking someone to break the rules.

Maybe the question I should have asked was - has someone used such service and if so, was it helpful/useful?

 

[ElenaP]

Have a look at this Facebook group, where parents follow Dr Richard Bernstein's advice.

Typeonegrit​

​

 

[ianf0ster]

Hi @Kuba85 I'm a Type 2 rather than a Type 1, but I do take an interest in most things related to Diabetes diets.
Many Type 1 members of this forum eat fewer carbohydrates than are in a 'normal diet' and thus reduce the amount of insulin they need to inject and with that reduce the chances of a significant mis-match between the amount of carbs eaten and the insulin needed to cover them.
That seems to make sense to me, however there are others including doctors who disagree and take the 'eat as many carbs as you like and adjust/increase your insulin to cover for them' approach.

You have already been pointed in the direction of Dr Richard Bernstein (well known in the USA) who uses a low carbohydrate diet to help manage his own Type 1 diabetes and that of his patients. There is also Dr Ian Lake in the UK (I came across him on Twitter) who also favours a low carb approach.

I will tag some of our Type 1 members in on this thread: @EllieM, @Antje77 , @Jaylee

I hope you get information that helps you (I doubt if you need a dietitian).

 

[Kuba85]

Thank you. This probably explains my confusion around the process, i.e. there seems no single right answer.

We did intend on following the first approach though. Ehhh lots to take in.

Many Type 1 members of this forum eat fewer carbohydrates than are in a 'normal diet' and thus reduce the amount of insulin they need to inject and with that reduce the chances of a significant mis-match between the amount of carbs eaten and the insulin needed to cover them.
That seems to make sense to me, however there are others including doctors who disagree and take the 'eat as many carbs as you like and adjust/increase your insulin to cover for them' approach.

 

[Jaylee]

So it’s early days for us.. But our initial reaction was:

- we are on this together with our daughter so will follow her with respect to adapting some healthier habits (we already eat rather organic, etc, but could still adjust some things like normal rice for brown rice, plain pasta for wholegrain pasta)

- we will try to use this as an opportunity to eat even cleaner than we have done because those habits stay with kids for life

- obviously we are also planning for none of us to have any unnecessary snacks in between our meals much like her

- online sources indicating there is a higher risk of obesity in teenagers/people using insulin. Is this even true? Does this have to be taken into account when planning meals/diet?

Basically we wanted to consult someone recommended online what is best course of action vs what we are eating now? How far do we need to adjust if at all? Is there a harm in having higher insulin injections as opposed to smaller doses - I find it odd to say “you can eat whatever you want, just add more insulin”. Where do you draw the line?

All this information is probably available online and you can experiment etc. But we are able to verify what is best and how to adjust.

*It is possible we will get some of this info from the hospital, but if someone used this sort of person before then maybe they could also comment here whether they found the process useful in the first place.

Hi,

Firstly, it's a tricky one regarding weight. Because type 1 undiagnosed can cause drastic weight loss..
The weight initially lost can be regained as a natural result once insulin is re introduced.

A child is also still developing.
I would be wary of focusing at this stage regarding potential obesity whilst a newly diagnosed is still working out a balance of things..
I personally couldn't put weight on if I tried..

There will no doubt be times your daughter may need to snack (fix hypos.) if the basal happens to be out for whatever reason?

I'm currently traveling through France. My basal is bang on. (Or should be.) Yet, I've been having to "sugar surf" best part of the day.. doesn't quite help the lower carb WOE for me, today..

You could take a look at something like "Diet doctor."

Or the recipies by Rupy Aujla "Doctor's kitchen." Which seems to agree with how my insulin profile works?

Best wishes.

 

[Nicola M]

I don't really have any advice as to where you should go looking for help for changing your diet except maybe talking to your diabetes team and asking if they have a dietitian you can speak to.

But from personal experience, I was diagnosed when I was 1 years old and cutting out snacks was just not feasible, especially as a growing child and running around a lot as children do my blood sugars did drop a fair bit even with having relatively tight control. As Jaylee has said initially weight can be put back on once you introduce insulin. Growing up I never restricted carbs or followed a low-carb diet, even now I wouldn't say I particularly do, I average 150g-200g of carbs per day. Am I a decent weight? Probably not but then nothing that a bit more exercise couldn't fix.

 

[EllieM]

Dr Bernstein is very popular with some T1s but I'm not sure how popular his ideas are with diabetic teams managing T1 children. I'd personally hesitate to put a T1 child on a very restrictive diet, specially as the advent of modern technology, in my opinion, gives more dietary freedom. Though the low carb approach is very popular on these forums, that is partly because of the low carbing T2 community here, which I suspect feeds through to encouraging low carbing T1s to post here.

Just my opinion, but I think you'd want to be on good terms with the diabetic team managing your child's levels, so listen to their advice. I've also seen dietary advice for T1s change a bit over my lifetime. Whatever happens, you and your child will probably need to learn to count carbs (5's probably a bit too young but I was doing it at 8). The only thing I remember eating differently from friends is that we didn't have a whole lot of sweets/candy in the house, and it didn't occur to me that pocket money could be spent on sweets, and at Easter, where some friends got massive quantities of Easter eggs, I seemed to end up with a smaller egg and a toy ...

But I don't remember eating much differently from my non diabetic brother.

It may be worth your while also investigating the diabetes.org.uk forums of the UK diabetes charity, as they do a lot of work regarding T1 children.

I'm not personally convinced that a healthy diet for a T1 child is much different to a healthy diet for a non diabetic child.

 

[Kuba85]

Hi,

Firstly, it's a tricky one regarding weight. Because type 1 undiagnosed can cause drastic weight loss..
The weight initially lost can be regained as a natural result once insulin is re introduced.

A child is also still developing.
I would be wary of focusing at this stage regarding potential obesity whilst a newly diagnosed is still working out a balance of things..
I personally couldn't put weight on if I tried..

There will no doubt be times your daughter may need to snack (fix hypos.) if the basal happens to be out for whatever reason?

I'm currently traveling through France. My basal is bang on. (Or should be.) Yet, I've been having to "sugar surf" best part of the day.. doesn't quite help the lower carb WOE for me, today..

You could take a look at something like "Diet doctor."

Or the recipies by Rupy Aujla "Doctor's kitchen." Which seems to agree with how my insulin profile works?

Best wishes.

Thank you.

(Some) weight loss along with bed wetting have been indeed the giveaways for us. So we definitely expect and hope for some weight gain. I just wanted hopefully have her regain what is healthy for her, rather than excessive. And I thought a balanced diet may be a way to do it (mindful though that maybe I am over-engineering here because strictly speaking balanced diet is good for everyone but very very few count the actual nutrients every day..).

Basically, reading day and night about this for the last few days I was mindful of any psychological effects down the line associated with this, and weight gain can contribute to that.

But again, maybe I am overcomplicating things and at the beginning we should just focus on eating what we did before we ended up in a hospital but only learning what level of insulin is needed to allow that sort of food ‘lifestyle’ (plus reduce some unnecessary snacks, unless she has low sugar level).

 

[Jaylee]

The only thing I remember eating differently from friends is that we didn't have a whole lot of sweets/candy in the house, and it didn't occur to me that pocket money could be spent on sweets, and at Easter, where some friends got massive quantities of Easter eggs, I seemed to end up with a smaller egg and a toy ...

Sweets were for "emergencies only."

Pocket money was for comics or I could save for airfix models?
Easter, was socks in a mug..

 

[ElenaP]

We are thinking of consulting our changed family diet with a specialist

I am impressed that you are already thinking of the whole family's diet. It would help your small daughter feel less different if her parents and any siblings quietly give up cakes etc.

 

[Jaylee]

Thank you.

(Some) weight loss along with bed wetting have been indeed the giveaways for us. So we definitely expect and hope for some weight gain. I just wanted hopefully have her regain what is healthy for her, rather than excessive. And I thought a balanced diet may be a way to do it (mindful though that maybe I am over-engineering here because strictly speaking balanced diet is good for everyone but very very few count the actual nutrients every day..).

Basically, reading day and night about this for the last few days I was mindful of any psychological effects down the line associated with this, and weight gain can contribute to that.

But again, maybe I am overcomplicating things and at the beginning we should just focus on eating what we did before we ended up in a hospital but only learning what level of insulin is needed to allow that sort of food ‘lifestyle’ (plus reduce some unnecessary snacks, unless she has low sugar level).

If I was to add anymore to this..

Work out what's consistently not working when it doesn't with your child. Then look at a change?
Nothing wrong with a healthy eating family venture all round.
But if the kid gets invited to her friend's birthday party? "Let her eat cake."

It doesn't make you a bad dad..

 

[Kuba85]

I am impressed that you are already thinking of the whole family's diet. It would help your small daughter feel less different if her parents and any siblings quietly give up cakes etc.

Tbh this is a new experience for us and those who are giving me their precious time on this forum are the only people I have encountered who had any diabetes experience. Never any friends/relatives. So I don’t know what others do, but being 39yo I cannot imagine chomping quietly on some sweets even when at work, when my 5yr old daughter at her school or home isn’t able to. That’s not right. And frankly if she can adjust, then so can her 3yr old brother… We are lucky we are just giving up excess sweet snacks and don’t need needles all the time like she does. A 3yr old can be taught basically anything at this point and in 2 years he will consider this normal state of affairs.

 

[Kuba85]

If I was to add anymore to this..

Work out what's consistently not working when it doesn't with your child. Then look at a change?
Nothing wrong with a healthy eating family venture all round.
But if the kid gets invited to her friend's birthday party? "Let her eat cake."

It doesn't make you a bad dad..

Funny you mention the birthday party. That was going to be my next/separate thread/question… Asking what parents do. There is normally there only pizza, crisps, sandwiches and .. cake. Don’t mind the cake but not sure how some poor quality, stale pizza can make up for a nutritious lunch… I guess that’s the next thing to figure out as there are plenty of parties ahead…

For the moment, we are just very uncomfortable with high deviations from normal glucose range levels, bu to maybe over time we will learn to tolerate it.

 

[EllieM]

For the moment, we are just very uncomfortable with high deviations from normal glucose range levels, bu to maybe over time we will learn to tolerate it.

When I was a child no one knew whether my glucose levels were deviating massively, because there were no tests other than ones that checked whether sugar passed into the urine (which it frequently did). So I have not much idea what is currently achievable for children with the new technology, but guess that some deviation is inevitable, specially given that your daughter's insulin needs will change as she grows.

The current hba1c level of 48mmol/L or 6.5% (depending on which units you use) was defined as the level at which diabetes is diagnosed because people with levels below this rarely had issues with diabetic complications in their eyes. This also corresponds to an average blood sugar of 7.8mmol/L , which is quite a lot higher than that of a typical non diabetic. I suppose I am trying to say that your daughter doesn't need to have perfect control to lead a normal and complication free life. Though I have been promised a cure in 10 years for my entire diabetic life modern tech has been absolutely transformative, and for new young diabetics the prospects are even better.

My advice would be to be patient, and recognise that it will take time to learn how to adapt to her diabetes.

Good luck. (And I think pizza is harder to dose for than cake )

 

[AloeSvea]

Hi @Kuba85. I just finished 'Rethinking Diabetes: What science reveals about diet, insulin, and successful treatments' by Gary Taubes, and if I was the parent of a T1 child, and thinking about family meals, I would want to read this book! It's focus is in fact type 1s, and it a fascinating history, and absolutely state of the art on the science.

 

[Kuba85]

Hi @Kuba85. I just finished 'Rethinking Diabetes: What science reveals about diet, insulin, and successful treatments' by Gary Taubes, and if I was the parent of a T1 child, and thinking about family meals, I would want to read this book! It's focus is in fact type 1s, and it a fascinating history, and absolutely state of the art on the science.

Hi, thanks so much. Ordered.

I do like the top review of the book on Amazon - https://www.amazon.co.uk/gp/custome...f=cm_cr_arp_d_rvw_ttl?ie=UTF8&ASIN=1803510692

"Don’t buy this book if you are looking for authoritative directions for how best to deal with type1 or type 2 diabetes. Conclusive advice is simply not possible to give in 2024. We still await the trials that might make this possible. What Gary Taubes offers is invaluable – an extensive account of the merits of the approaches that have been taken to prolong life with diabetes. Equipped with this information, you will be in a better position to make decisions for yourself. (...)"

So far, from what I have read there is a fairly strong association between insulin level and fat storage (this can itself lead to more insulin needed down the line and/or other complications, and possibly shorter life span + possibly less life fulfilment). Obviously there will be certain amount of insulin needed (long-lasting) to bring the level of glucose to the right range that is driven by age/body requirements.

It does seem to me however that from there on, the amount of insulin to be injected depends on ones lifestyle and choices. If a person can/chooses to eat healthier they will just need less of it (again as I understand the amount of long-lasting one will rather depend on one's age / body and so changes over time).

Taken together, I see zero downside to adjusting lifestyle to a healthier one. The linkage between obesity and T1D is not entirely conclusive (John Hopkins study showed similar rates for T1D and general population), but it really cannot hurt to eat better. Kids are still small, so I think there is never going to be a better opportunity in adjusting our lifestyle further and at the same time supporting our little champion.