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Real life with type 1: An awkward relationship with carbs

Updated: Jun 8

There's an elephant in the room (for those of you familiar with the history of the Family Centre, her name is Elly :)) It's the role of food and carbohydrate intake in type 1 diabetes.


I must have written this blog post over twenty times trying to get it right. Because somehow, for reasons that will forever elude me, we don't like to talk about food's role in managing type 1. In fact, the Family Centre has copped heavy criticism over its lifetime for daring to talk about it. It's something I wear as a badge of pride. It's just another area where we're willing to talk about it because we live with it.


But really, it boggles my mind. In 21 years of living with type 1 diabetes, there is one thing that is abundantly clear. While there are more than 42 factors that influence blood glucose (check them out here: https://diatribe.org/diabetes-management/42-factors-affect-blood-glucose-surprising-update), there is no factor more impactful on my day to day blood glucose management that what I eat.


Well duh, I hear you all say. Eat more carbohydrates, and your blood glucose will go up unless you take more insulin. Get a dose wrong for the carbs you eat, and your blood glucose falls out of the careful balance we're all trying to maintain. It's one of the absolute cruxes of type 1 management - the better your ability to match insulin and carbs, the better your blood glucose management.


But somewhere along the way, we decided that we should ignore the carb side of things and just focus on the insulin. Everything is sugar-free with insulin, right?


On the one hand, I love the philosophy behind this approach. Type 1 has a nasty tendency to drive you to avoid things you enjoy for fear of it impacting blood glucose. No, I won't take the dog for a walk, what if I fall low. No, I won't eat that birthday cake, it has too much sugar... This approach says follow the normal dietary advice and eat what you like, insulin will sort you out.


But, great as this philosophy is, it ignores reality. I'm no Dietitian, I'm not a Diabetes Educator, but I do live with this damn thing every day and I know what it takes to manage it.


Carbs and type 1

First, no matter what approach you take, you have no choice but to be aware of the carbohydrates you take in. We call this being "carb conscious". Even if you choose to eat ALL the carbs, you have to know what you're taking in order to match it with insulin. Even if you're on set doses (a whole separate topic), you are matching intake to insulin.


Secondly, it is hard to find a person with type 1 diabetes who doesn't change something about their food intake as a result of their type 1. Some people have foods that kick their butts no matter how clever their insulin-dosing strategy is (pizza or sushi anyone?). Some people can stick the landing with these foods with a complex dosing strategy but decide it is not worth the effort.


Some people take it a little further and try to reduce their overall carbohydrate intake. The approach here is not rocket science. If carbohydrate intake is the single biggest factor determining my day-to-day blood glucose variability, what if I reduce that a little bit?


We all know that nailing our insulin doses is a constant challenge, no matter how good our carb counting is, no matter the safety net we might get from a closed-loop insulin pump. What carbs were snuck into that dish by the chef at a restaurant? Can I trust the carb count on the label (no you can't, that label wasn't designed for insulin dosing, it is allowed to be more inaccurate than you think!), how much does that banana weigh and how green is it and... (I hate dosing for bananas...).


It's not like the stakes are low here. Miscount the carbs on a high-carb meal by even 10% (maybe that pasta sauce is so good because the chef added a bit of sugar?) and we could be talking about units of extra insulin on board or nowhere near enough. And of course, we're not working with a fully functioning pancreas here, our insulin has to absorb through our skin and make its way to where it’s needed. What if the timing is off by just a little bit? It's not like we can tell our insulin to speed up or slow down once it's in there.


Somedays, getting carb counts and insulin doses right is like nailing water to a tree. External insulin dosing is still, even with all our advancements, a crude replacement for a well-oiled piece of human biology. You will get it wrong. You will get your dose right with every piece of info you have, and it still won't end up with the result you want because of factors you can't even see.


That's real life with type 1 and pretending otherwise is setting people up for failure.


Low-carb? Keto? Sucking the joy out of life?

It's about here that some in the diabetes community will start frothing at the mouth, ready to declare me a crazy advocate of keto diets or carnivore diets or some other wackadoo dietary strategy.


I am no such advocate. Sorry keto peeps, I'm sure your diet is great for you but it 'aint for me.


But if you've got type 1, it's about time we supported you to understand that insulin isn't the only tool in your tool belt. You can change what you eat. At this point I can almost hear the cries of horror from traditional diabetes teams... but let's talk real life with type 1.

I have a complete inability to process the carbohydrates in my food without external insulin. I can use external insulin but that's not an easy task. There are consequences if I get my doses wrong. Real, life-threatening consequences.


I could remove all the carbohydrates from my diet but then what kind of life would I be living? I like carbs. Some of them are delicious. And if I completely removed carbs from my diet my body would still find ways to create glucose from what I eat. So I'd still need insulin even then. Plus my body would still be producing glucose from my liver so getting away from external insulin isn't happening. I'd be sad, missing out on the foods I love, possibly missing out on nutritious food, still needing external insulin and incredibly restricted in what I could eat on any given day. I'd probably land a good HbA1c, but not much else.


I could do what I was told when I was diagnosed and just eat whatever I wanted and take insulin to match. And I'd find it bloody hard. I'd make lots of mistakes. I'd get things wrong through no fault of my own. I'd endure massive swings of blood glucose as I compensated for over and underdosing, I'd swear at nutrition panels and curse the name of every chef at every restaurant I ever attended. I'd curse my diabetes educators for making it sound so easy when so many things throw off my dosing on a daily basis. Sound familiar? It's what I did for more than a decade. It sucks.


Is it possible to get good blood glucose control with that approach? Of course. I have done it myself. But it's hard, it's draining, it takes up a lot of brain space. It includes plenty of hypo's and hyper's despite best efforts. And the reality is, the evidence tells us that for most people it isn't working. We give people an imperfect tool to manage an incredibly complex condition and wonder why less than 1 in 5 people achieve target blood glucose control.


So what's the alternative? Living the carb-conscious life

Here's the not-so-shocking truth. Both carbohydrates and insulin intake matter. And both can be varied. Now obviously don't do this without the support of your clinical team, but let's talk a bit about why.


At its simplest, the fewer carbohydrates that you eat the less insulin you will need. But more than that, the fewer carbohydrates you eat at any one time, the smaller the insulin dose you will need. Who cares how small or big an insulin dose is? You do. Not because you're trying to avoid taking insulin but because you're trying to avoid taking too much or too little (again, duh).


And if that insulin dose is huge because you're eating a plate of mom's spaghetti, you'd better be good at carb counting (and mom better not be sneaking anything into the sauce), because the large dose of insulin you take is in your system now. And maybe that bowl was a bit smaller than you thought. Maybe your eyes were bigger than your stomach. Maybe the cream in the sauce slows down your digestion and that massive dose of insulin gets into the blood faster than the glucose.


Little mistakes with big doses can equal big consequences. Let’s make that real. Here’s the nutrition panel for a typical spaghetti (remember it's the dry pasta they use here):




Note the note they put at the bottom there: “Quantities stated above are averages only” – Oh dear – that label might not be accurate! But also, who weighs 125g of pasta? And what if you’re cooking a batch for everyone – did you split that pasta evenly 4 ways?

So, we’re dealing with 72g of carbs so far. But it’s not, maybe the label is a bit off, maybe your estimation is a bit off – so let’s say it's 10% on either side. Now we’re dealing with anywhere between 65 and 79 grams of carbs we have to dose for.


But you don’t eat pasta without sauce do you (that must be a sign of psychopathy… or my 6-year-old). So, let’s grab a typical bolognese pasta sauce:



Ok! So, we’ve got another 8 grams of carbs. But did you really weigh out the sauce to 112g? And is that label really accurate? Let’s use the same rule of 10% and now we’re dealing with 7-9grams (not so bad with the smaller carb count hey?).


But added together now we’ve got a carb count to dose for of anywhere between 72 and 88g. Let’s use some easy math here and assume we need 1 unit of insulin for every 10g of carbs. Here’s what that looks like:

Scenario

Carbs

Insulin Required*

What the label says

80

8 units

Carbs are 10% less

72

7 units

Carbs are 10% more

88

9 units

*in this hypothetical example of course!


1 unit is a lot of insulin to miss out on or give too much of right? For me, that’s the difference between a major hypo, happy blood glucose or an annoying high.


Now let's consider the same meal but much to Mom's disgust, we've subbed out the pasta for a lower-carb alternative. It's the sauce you wanted anyway, right? Does it really matter what the vehicle is to get that delicious bolognese into your stomach? If it doesn’t, you've just changed the diabetes management game entirely.


Let’s for argument's sake use Edamame pasta. Yes, it’s green which is weird, but its texture is good and who cares as long as I get that sauce? Here’s the nutrition panel for one brand:




So 2g of carbs. Let’s get that wrong either way by 10% and we’re talking 2.2 or 1.8g of carbs – still 2 in my book (and most bolus calculators)!


Let’s keep the pasta sauce the same, it’s the good bit after all. And here’s the insulin calculation:

Scenario

Carbs

Insulin Required

What the label says

10

1

Carbs are 10% less

9

0.9

Carbs are 10% more

11

1.1

 

We can see our safety net here is much bigger. Even if we smashed that bowl and really messed up we’d only be off by a little bit. We’d maybe see a small blood glucose rise or a light dip that is more easily corrected. A rollercoaster is unlikely. A deep and rapid hypo is unlikely.


Take in fewer carbohydrates and it will likely be easier to keep your blood glucose in check, it will be easier to correct it if you mess up, and the consequences are likely to be smaller. We call this the law of small numbers. Keep your doses smaller and things become a little easier to manage.


What does it mean for people with type 1?

Am I saying eliminate all pasta in your life? Absolutely not! if pasta is your thing go you! Just know that you'll need to watch that dosing carefully and be accurate in your carb counting. You've got this!


So what am I saying?


Carbs matter. Your metabolism is not normal. Sorry, your immune system betrayed you.

So, add food intake to your toolkit. Deliberately. Know that insulin is not your only tool to manage blood glucose. You're probably already doing this in one way or another. But give yourself permission and the skills to work-out what works for you.


Some people decide that any restriction on their carbohydrates is too much to bear. Cool. You should be supported to nail that insulin dosing game as much as you can to live the carb life. But know that if you're getting your butt kicked despite the support, you could always consider some easy changes to food.


Some people decide that food isn't that important to them. As long as they're getting nutritious fuel in the system they're going to choose the foods that are easiest to dose for. Cool. You need a team that is going to support you to do that, not tell you that your plate doesn't have enough grains on it. You also need a team that's going to tell you that just because you don't have to dose for bacon, it's not the only thing you should be eating (tragedy I know). The real tragedy here is that the protein in the bacon turns to glucose eventually and you'll have to dose anyway, but that's a story for another day.


But in between these extremes, you will open yourself up to so many more options if you stop assuming that insulin is the only tool at your disposal. It isn't. You're not crazy for choosing foods that provoke an easier-to-manage blood glucose response, you're sensible in the face of a complex disease.


Even if you just experiment with a few food swaps. Even if you just get rid of carbs that you don't really like anyway, you might find a happier place.


And don’t underestimate the benefits of having a bit less to think about. Less complicated carb counts, potentially less rollercoaster blood glucose, less severe hypers and hypos. It could help you claim some brain space back from type 1.


Type 1 is hard enough, don't try and manage it with one hand tied behind your back.


What about the risks?

If you do decide to start lowering your carbohydrate intake, some people are not going to like it. Some people are going to tell you it’s a “fad diet”. Don’t worry, you’re not going on a diet at all.


Some people will tell you that it will increase your risk of hypoglycemia. Well, if you don’t adjust your insulin intake to suit eating less carbs then yeah, but adjusting carbs and insulin is the type 1 life. Get some good support from an educator if you’re not confident adjusting. And remember that there’s no such thing as a low-carb hypo treatment! If you need rapid-acting glucose you need rapid-acting glucose!


Some people will tell you that you’re increasing your risk of DKA. This comes mostly from the mistaken assumption that everyone going low carb is eating a keto diet and producing ketones in their blood. That’s a bit of a furphy anyway but we’re not saying go keto. Or even “low carb” (whatever that is). Again, we’re talking about reducing carbohydrate intake, whether that’s a food swap or a wholesale change. And again, get your educator involved if you need help.


Some people will tell you that doing anything with your diet will result in an eating disorder. Tell that to someone avoiding peanuts because they’re allergic. Anyway, having type 1 means having a bit of a weird relationship with food at the best of times. We’re definitely at higher risk of eating disorders generally, whether we lower carbs or not, and there’s more info on help for that if it ever pops up below.


Ok I'm convinced (or at least intrigued), how do I start?

Like I've said throughout, this is probably something you're already doing, whether consciously or not. But here's a few tips for getting started.


Carb Counting is important: Whatever dietary strategy you choose, your carb counting will be incredibly important. In some ways it will be easier with reduced carb intake but regardless, getting this right is vital to nailing your insulin doses. Carb counting sounds easy but there's lots that goes into it. Luckily, our carb-counting ninja Amy Rush has put together our leading Cyber Carbs online course that will teach you everything you need to know. Anyone with type 1 can benefit from this intensive course on carb counting with confidence. https://t1learning.com/cyber-carbs/



Get the right team behind you: Don't do this alone. Changing your carb intake will impact your diabetes management and you need the right advice to do this safely. You also need people who get what it’s like to live with type 1 and are willing to support you with whatever dietary strategy you chose to explore. At the very least I'd suggest finding an amazing diabetes educator who genuinely understands type 1 diabetes and a dietitian who is willing to look beyond the standard healthy eating guidelines to help you manage type 1 in the way that works for you and doesn't end up causing malnutrition! These can be very hard to find!


Luckily (and admittedly, with some bias!) we have both! The Type 1 Diabetes Family Centre is lucky to attract clinicians who live and breathe type 1. It's all we do. We even have two amazing Diabetes Educators who are also Dietitians and are happy to support you in exploring carbohydrate reduction as part of an overall strategy to manage type 1.

With telehealth appointments available you don't even have to come to us, we'll support you wherever you are across Australia. More info here: https://www.type1familycentre.org.au/diabeted-education-and-dietetics


Remember that food is more than fuel!: Food is one of the great joys of life. Having type 1 can sometimes make it feel like food is the enemy. As you explore a dietary approach that works for you remember that we are trying to strike a balance between effectively managing type 1 diabetes and not letting it hold you back from the things you enjoy. 

Working with your team to find an approach that works for you is key. If you ever feel that your relationship with food is becoming challenging then reach out for support.


Unfortunately living with type 1 means being at increased risk for eating disorders and challenges with body image so know that support is available.


At the Family Centre we are very lucky to have specialised support for people with type 1 including a specialist in Eating Disorders, Beck Newton (https://www.type1familycentre.org.au/eating-disorders) and a psychologist dedicated to supporting people with type 1 diabetes, Natalia Hazell (https://www.type1familycentre.org.au/psychology).


Eat delicious food: Ain’t nobody got time for lower-carb foods that suck. Don’t just eat something because it’s lower carb. Some low-carb food is genuinely awful.

But there are AMAZING low-carb recipes. Indulgent, delicious, nutritious and filling. And we’ve done some of the hard work for you. If you want battle-tested lower carb recipes that taste amazing then our Carb Conscious Cookbook is for you: https://www.type1familycentre.org.au/product-page/carb-conscious-cooking-book


Or you know, check out the hundreds of other recipes and cookbooks available online and in bookshops everywhere. We’ve cracked the code on good low-carb foods. Don’t put up with terrible “sugar free” products ever again – just eat good stuff that happens to be lower carb.



Learn from the tribe: While experimenting with new foods can be fun, it can be hard to keep on top of all the options out there. Luckily, we have more than 2,500 people living with type 1 diabetes connected to our community who are more than happy to share their experience, their wisdom and their recipes! If a particular food is giving you trouble or you want to find an alternative that doesn't taste like cardboard, someone in our tribe will have walked that path before. You never need to do this alone, join the conversation and connect with others walking this path: https://www.type1familycentre.org.au/connect


Start wherever you want to start: This isn't a diet. It's a tool that you can use as you choose. Please don't suddenly leap into a keto diet or something dramatic like that. Work with the team you trust and have fun with the experimentation. If you find something doesn't work for you then find something else. There are as many approaches to t1 management as there are people with t1 after all.


And most of all, Happy eating!


I'm off to enjoy a bolognese that for some reason I've just developed a hankering for...

 

 








Benjamin Jardine

CEO - Type 1 Diabetes Family Centre ("the diaboss")

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