DWED on Radio 1 today

[Northerner]

Calls for diabulimia to be recognised, says doctor

The latest NHS figures suggest insulin omission is a growing problem in young women.

The NHS National Diabetes Audit says a high proportion of women aged between 15 and 30 are skipping insulin injections to lose weight.

Now a charity wants 'diabulimia', as it is known, officially recognised as a mental health condition.

Diabulimia is when diabetics deliberately restrict their insulin for weight loss.

http://www.bbc.co.uk/newsbeat/20988655


Listen today at 12:45 and 5:34 for the whole feature.

Well done on publicising this DWED! 🙂

 

[Caroline]

It is good to raise awareness and get the message across, hope it is a success.

 

[DeusXM]

I partially agree but I think part of the solution is also agreeing that insulin restriction isn't actually a bad thing provided it is managed sensibly.

There is a world of difference between someone not taking their insulin and not controlling their blood sugar to lose weight, and someone restricting their insulin intake but then modifying their diet to lose weight while maintaining blood sugar control.

For instance, I myself am reducing my insulin intake in an effort to lose weight. My total daily dose has gone from around 50u per day to nearer 30u. However, my carb intake has also gone down from around 70-90g a day to nearer 5-15g. The result is I am taking less insulin but my blood sugar has remained well-controlled. What I'm doing is an effective way of losing weight and is not a mental health problem. Simply telling vulnerable women (and men, for that matter) that cutting down their insulin is a terrible thing will simply perpetuate a cycle of not being able to lose weight, meaning they'll then go to extremes.

The problem is the advice we're given as T1s - has anyone seen Novo Nordisk's advice for a T1 going out to a party for the evening? http://www.changingdiabetes.co.uk/w...with-diabtes/living-with-type-1/partying.aspx

I read this and worked out that in addition to eating a three course meal and a few calorific alcoholic drinks, over the course of 12 hours I'm also generally expected to eat another four snacks (including one 'extra large' one). I appreciate we need to avoid hypoglycaemia but I can easily imagine an 18-year-old woman who feels a bit overweight looking at this advice in dispair - this is like an extra 2000 calories on top of what they're already eating and the advice is still 'don't adjust your insulin'. Why not advise to eat like everyone else, and then just dial back their insulin according to the activity and effect of alcohol? Similarly, we're also all told to eat pasta or a banana before exercising - which of course then completely defeats the entire point of doing the exercise for most people!

As long as we keep telling people that cutting down on insulin is a 'no-go' area, we'll still see thousands of T1s struggle to lose weight and we'll still see several of these people deliberately put themselves into dangerous DKA, rather than safe and benign ketosis.

 

[Northerner]

I partially agree but I think part of the solution is also agreeing that insulin restriction isn't actually a bad thing provided it is managed sensibly.

There is a world of difference between someone not taking their insulin and not controlling their blood sugar to lose weight, and someone restricting their insulin intake but then modifying their diet to lose weight while maintaining blood sugar control.

I think that's rather missing the point of the problem, and what DWED are concerned with - you may as well say that if only people ate sensibly then there would be no eating disorders. The problem here isn't 'managing' weight loss whilst maintaining good BG levels, it is disregarding BG levels and omitting insulin due to a compulsion to lose weight unnaturally.

 

[Caroline]

I think that's rather missing the point of the problem, and what DWED are concerned with - you may as well say that if only people ate sensibly then there would be no eating disorders. The problem here isn't 'managing' weight loss whilst maintaining good BG levels, it is disregarding BG levels and omitting insulin due to a compulsion to lose weight unnaturally.

and this is only one part of a whole area of eating disorders and mental health issues.

 

[DeusXM]

The problem here isn't 'managing' weight loss whilst maintaining good BG levels, it is disregarding BG levels and omitting insulin due to a compulsion to lose weight unnaturally.

I think you're interpreting diabulemia as a one-thing condition, whereas I think it's far more likely to be a spectrum disorder. Yes, I'm sure there are people out there omitting insulin to maintain an abnormally thin body. But almost every single report I have ever read about an individual with diabulemia seems to start with someone who was overweight in their teens and wanted to be the same size as everyone else. I might be wrong but I really don't think the majority of diabulemia sufferers are people who suddenly wake up one morning and decide to be unnaturally thin by not taking their insulin - it's the end result of months or years of putting on weight and being unable to shift it, and then making the connection that they used to be thin before they were diagnosed. Diabulemia is perfectly logical if you're unable or unwilling to consider long-term consequences and THAT'S the heart of the problem. To tackle diabulemia, there needs to be a clear pathway set out to deliver what is perceived to be the positive outcome (going from overweight to normal weight) without suffering the negative outcome (DKA).

The problem is that current diabetes dietary advice is predisposed to make people with T1 put on a lot of weight. I am convinced a campaign that pointed out the dangers of not taking insulin combined with a more practical approach to how people with T1 can lose weight without compromising on BG control would eliminate the overwhelming majority of a diabulemia cases.

Yes, well done to DWED for raising awareness. But awareness isn't enough. What is the practical step? The awareness raising campaign itself is basically pointing out if you don't take your insulin, you'll lose weight. Is it not conceivable that this could massively backfire? Yes, diabulemia needs to be recognised as a medical condition but without any actual action, all that's going to happen is it's going to be come more well known and possibly, more prevalent.

 

[everydayupsanddowns]

Personally I think there's a very clear BIG difference in the dose adjustment/management that Deus talks about and trying to lose weight by skipping doses.

Most of us T1s lost a *lot* of weight before Dx, but nothing about that was healthy.

Maybe I've just been lucky, but I've never been told not to reduce doses if I wanted to eat less. The advice I have *always* been given (from way back in 1991) was if you eat fewer carbs you need to take less insulin.

 

[bennyg70]

Personally I think there's a very clear BIG difference in the dose adjustment/management that Deus talks about and trying to lose weight by skipping doses.

Most of us T1s lost a *lot* of weight before Dx, but nothing about that was healthy.

Maybe I've just been lucky, but I've never been told not to reduce doses if I wanted to eat less. The advice I have *always* been given (from way back in 1991) was if you eat fewer carbs you need to take less insulin.

Agreed, I lost 3 stone in the last year by switching to a Low gi diet, including exercise in my routine, and controlling portion sizes. I still intake a good qty of carbs, not huge tho, say 130 - 160 g average. With this my insulin naturally came down in accordence to my carb to insulin ratio, Ive never been advised not to do this, Its carb counting & dose adjustment.

I find this a different story to people who skip insulin altogether. I dont know much about the subject but I imagine they try and replicate the situation they were in pre diagnosis, as much of us found ourselves in, where we rapidly lost weight.

 

[lauraw1983]

I think you're interpreting diabulemia as a one-thing condition, whereas I think it's far more likely to be a spectrum disorder. Yes, I'm sure there are people out there omitting insulin to maintain an abnormally thin body. But almost every single report I have ever read about an individual with diabulemia seems to start with someone who was overweight in their teens and wanted to be the same size as everyone else. I might be wrong but I really don't think the majority of diabulemia sufferers are people who suddenly wake up one morning and decide to be unnaturally thin by not taking their insulin - it's the end result of months or years of putting on weight and being unable to shift it, and then making the connection that they used to be thin before they were diagnosed. Diabulemia is perfectly logical if you're unable or unwilling to consider long-term consequences and THAT'S the heart of the problem. To tackle diabulemia, there needs to be a clear pathway set out to deliver what is perceived to be the positive outcome (going from overweight to normal weight) without suffering the negative outcome (DKA).

The problem is that current diabetes dietary advice is predisposed to make people with T1 put on a lot of weight. I am convinced a campaign that pointed out the dangers of not taking insulin combined with a more practical approach to how people with T1 can lose weight without compromising on BG control would eliminate the overwhelming majority of a diabulemia cases.

Yes, well done to DWED for raising awareness. But awareness isn't enough. What is the practical step? The awareness raising campaign itself is basically pointing out if you don't take your insulin, you'll lose weight. Is it not conceivable that this could massively backfire? Yes, diabulemia needs to be recognised as a medical condition but without any actual action, all that's going to happen is it's going to be come more well known and possibly, more prevalent.

Granted I haven't been diagnosed that long compared to many, but that is a staggering statement. Eating disorders are FAR more complicated than that, and adding in diabetes to that only complicates things further. I have always been told to adjust doses according to food intake, and DAFNE is a huge step in that too - which is a course all Type 1's should have the opportunity to do IMO. Historically maybe when insulins weren't as refined(?) as they are now, yes people had to "eat to their insulin" and I can see why that led to weight gain....but nowadays, no. It's all about education - people need to do that for themselves, just as much as a Dr telling them something.

I have also low carbed like you (also for weight loss) and it's common sense you need far less insulin - and possibly less basal too as your body weight drops too of course.

I am very glad they are raising awareness, and hope it soon is properly recognised within the medical world - it needs to be.

 

[trophywench]

Diabulimia isn't really about being fat in the first place is my understanding. Could be, but I doubt it. Like anorexia, it's a desire to be unnaturally thin because you have a completely distorted view of yourself.

The mental aspect is there because of the distortion (which you wouldn't see normally, you'd look in the mirror and say, well that bit's OK and that bit's OK, but I could do with shifting the fat here or there, so I'll concentrate on those bits - I'll give up chocolate/exercise more whatever) and then a 'control' thing after that.

When you have 'stuff' happening to you that you don't understand (probably diabetes in this case, but could just be LIfe - that your brain just can't cope with) then I think sometimes you opt to control the one thing or things you CAN control, whatever that happens to be.

 

[DeusXM]

The advice I have *always* been given (from way back in 1991) was if you eat fewer carbs you need to take less insulin.

Which is broadly the same thing. The reality, as we all know, is that insulin converts excess blood sugar to fat. So a sensible approach to weight loss is to reduce the intake of foods that raise blood sugar, which then also results in a reduction in insulin intake. The sensible approach to wait loss is to therefore eat less blood-sugar raising foods, which mean you take less insulin, which means you put on less weight. Perhaps I wasn't clear as I could have been in the first instance - my approach to losing weight has been to eat fewer carbs, meaning less insulin. By eating fewer carbs, I can reduce my insulin intake safely, thus reducing my fat storage and promoting fat metabolism. It's a bit chicken and egg, I know!

Eating disorders are FAR more complicated than that, and adding in diabetes to that only complicates things further.

I completely agree eating disorders aren't simple at all. The reason diabetes adds an extra layer of complication is because it's one less automated variable and despite people going on DAFNE and adjusting their doses according to their carb intake, the message is still the same. Diabetes UK still push a ridiculous line that meals should be based around starchy carbs. Other organisations says your diet should be at least 60% starchy carbs! Being able to bolus adequately for a 100g carb meal won't do anything for you in terms of weight management. It's ideal from a blood sugar perspective but no-one seems to discuss the weight implications. Every single conversation I've had with a dietician or doctor about carb intake has always ended in exactly the same way:

Doctor: "Insulin does convert glucose to fat. But you're diabetic so you need to match your insulin intake to your carbs. And your carbs need to be a significant part of of your diet. And you need to watch your weight."
Me: "So if I take less insulin, I'll store less fat."
Doctor: "Well, that will give you higher blood sugar, so that's a bad idea."
Me: "So what if I ate fewer carbs so I'd need less insulin?"
Doctor: "You shouldn't cut down on carbs."
Me: "So how can I cut down on insulin if I'm not supposed to cut down on carbs? How can I possibly then lose weight?"
Doctor: "Eat a low fat diet."
Me: "What's that got to do with insulin?"
Doctor: "Fat is bad."

I'm sorry but that's the advice that's churned out by every single official authority on diabetes. And it's just not good enough. The problem is as long as we keep telling people cutting down on their carbs and their insulin is wrong, you'll end up with the all-or-nothing disaster situation. How on earth is someone supposed to be able to safely work out for themselves to avoid weight gain when they are constantly told by experts to eat before exercise and to do nothing about the two things that have the greatest influence on their weight?

I imagine they try and replicate the situation they were in pre diagnosis, as much of us found ourselves in, where we rapidly lost weight.

Bingo. That's what happens when you tell people that cutting back on carbs is off limits.

Yes, I completely agree that diabulemia and eating disorders are extremely complex mental health issues and the people with these issues need a lot of support and love. But I am convinced that it would be extremely easy to avoid the snowball effect that creates diabulemia, at least. If more T1s were told the truth, by doctors, and were 'allowed' more free rein to develop diet plans beyond the relentless 'have a baked potato with everything', far fewer T1s would develop unhealthy relationships with food and be far happier with their bodies. That won't help those with diabulemia right now but I'm sure it'll help plenty of young people out there feeling they need to lose weight quickly because they simply won't be overweight to start with.

 

[everydayupsanddowns]

Doctor: "You shouldn't cut down on carbs."

I can see why you feel the way you do if you've had that frustrating conversation - but that's the bit of the puzzle that's missing for me. I've never been told that (though I don't doubt that many have, based on what some T2s post on forums like this one)

 

[Northerner]

...Yes, I completely agree that diabulemia and eating disorders are extremely complex mental health issues and the people with these issues need a lot of support and love. But I am convinced that it would be extremely easy to avoid the snowball effect that creates diabulemia, at least. If more T1s were told the truth, by doctors, and were 'allowed' more free rein to develop diet plans beyond the relentless 'have a baked potato with everything', far fewer T1s would develop unhealthy relationships with food and be far happier with their bodies. That won't help those with diabulemia right now but I'm sure it'll help plenty of young people out there feeling they need to lose weight quickly because they simply won't be overweight to start with.

I still think you are missing the point, and also what the charity is all about. In society there are people who suffer from body dysmorphia, anorexia and bulimia, whether they are overweight or not. With T1 thrown into the mix they have a powerful extra tool they can use to alter the perceived problems with their bodies. It's not necessarily about whether they have gained weight, but how they view themselves. Currently, there is no joined-up system of care for people who suffer from T1 and an eating disorder, so an ED specialist may offer inappropriate advice to a sufferer, and likewise a diabetes specialist may offer contradictory advice. DWED is working hard to improve this situation and works closely with individuals to make sure they receive the right care at the right time, as well as getting the condition recognised as a diagnosable one within the NHS.

 

[DeusXM]

You have been extremely fortunate then (at least, compared to me) - in the last 14 years, I've had just ONE DSN ever countenance the idea of cutting back on carbs. I can't blame them though - look at the advice that's given from the official authority:

http://www.diabetes.org.uk/Guide-to...ith-Type-1-diabetes/Ten-steps-to-eating-well/

Include starchy carbohydrate foods as part of your diet - Examples of starchy carbohydrates include bread, pasta, chapattis, potatoes, yam, noodles, rice and cereals.

Cut down on the fat you eat, particularly saturated fats - eating less fat will help you to lose weight if you need to.

http://www.diabetes.org.uk/Guide-to...-well-with-Type-1-diabetes/A-healthy-balance/

http://www.diabetes.org.uk/Guide-to...es/Recipes/Catering_for_prople_with_diabetes/

High fibre cereals
Unsweetened fruit juice
A selection of wholemeal and granary breads or rolls as well as white.

Have plenty of starchy carbohydrate foods available.
have bread already on the table as people requiring insulin may have given their insulin injection and therefore will need some carbohydrate within half an hour of their injection.
People with diabetes need meals including carbohydrates, such as potatoes, pasta or rice.

Suitable snacks are:
Fruit - fresh or dried.
Plain biscuits, eg garibaldi, rich tea, gingernuts, digestives, hob nobs.
Bread or toast, muffins, crumpets, teabreads, plain or fruit cakes and cereals.

This is the official advice. It's utterly dreadful. How on earth can anyone with diabetes hope to avoid weight gain with advice like this?

 

[DeusXM]

In society there are people who suffer from body dysmorphia, anorexia and bulimia, whether they are overweight or not. With T1 thrown into the mix they have a powerful extra tool they can use to alter the perceived problems with their bodies. It's not necessarily about whether they have gained weight, but how they view themselves.

Yes, I agree with this. My question though is what percentage of diabulemics are people with serious body dysmorphia, and what percentage are people who have become overweight as a result of following diabetes treatment guidelines. I genuinely don't know, and I may be wrong, but my instinct tells me the majority of cases of diabulemia probably have a very different starting point from body dysmorphia.

 

[lauraw1983]

I think you are in a minority being given that advice then by every single person you see about diabetes.

I never have been.

When I *DID* ask a dietician about low carbing all she said was "at the moment there's hasn't been enough research into long term low carbing for anyone, let alone diabetics so we can't recommend it" - she didn't say NOt to do it.

TBH it's about education and the tools ARE out there for people to research themselves nowadays if they want to. If they don't, and they want to listen to outdated advice....well frankly that's up to them?

All that has nothing to do with diabulimia IMO though - completely separate issue which needs addressed differently.

 

[HelenM]

A lecture to a group of people with D from clinician/researcher. (good but long!) She describes what eating disorders are, the relationship to diabetes. The extent and possible help/ treatments.
http://behavioraldiabetesinstitute.org/video-Eating-Disorders-Diabulimia-2008-10-27.html

The thoughts on low carbing from one recovered diabulimic.(main part is about putting a young child on Bernstein which I realise Deus isn't advocating)

I?m very ?vocal? about my distaste for low-carb diets. I don?t think that eliminating or severely restricting entire categories of food is nutritionally sound. Never mind its nutritional merits or lack thereof for a moment though because I?m at least as concerned that it?s psychosocially unhealthy. One of the reasons I?m so quick to elaborate on my success with a diet of moderation is because I perceive a global oversight of the importance of our diets to our psychosocial well-being. What we eat and how we eat has obvious physiological significance, but somewhere along the lines, the psychosocial significance has become lost, and I think that has much to do with why our society is plagued with eating disorders, food and body issues, and obesity.
If you know anything about me, my perspective on this probably comes as no surprise to you
Dietary moderation is relatively new to me, and I extol its merits because I?ve been all over the nutrition map with bulimia, diabulimia, starvation diets, and my own history of obsessive elimination of categories of foods that I demonized for fear that I?d gain weight under the guise that I was just trying to be healthier when I was really just blinded by food-related control issues

.

http://www.thebuttercompartment.com/?s=+bernstein

 

[DeusXM]

All that has nothing to do with diabulimia IMO though - completely separate issue which needs addressed differently.

See, I think that's the problem, seeing these as unrelated issues.

We already know that cultural pressure appears to have a particularly large influence on the proportion of female anorexic in their teens. That culture pressure is from media images of idealised body shapes.

The problem is the advice given for diabetes treatment in itself makes achieving this idealised body largely impossible as it promotes weight gain.

You can't disconnect diabulemia from the poor dietary advice given to people with diabetes. It stands to reason that if a)cultural pressure of body image increases the frequency of eating disorders and b)you have a medical condition which has a treatment route that makes it even harder to face off that cultural pressure, then changing the treatment regime could significantly alleviate the impact of that cultural pressure. And those who are mentally predisposed to eating orders, perhaps, might therefore make extremely bad choices in changing that treatment regime ie. diabulemia. If we can't remove the cultural pressure, and we can't magically reconfigure the way someone's brain works to stop them being predisposed to eating disorders, then the only option left is to change the diabetes treatment regime. And that means the entire medical edifice is going to need to be much more open-minded.

Raising awareness is obviously a good step but until someone actually starts yelling at the dieticians and the doctors to do things differently, all we're going to do is make sure they know the name of what's gone wrong, instead of fixing the problem.

Incidentally, I am not advocating low-carb for everyone. I'm all in favour of dietary moderation which is why generally I will eat carbohydrates if I feel like them. The point is that the official diet pushed for people with diabetes is NOT a moderate diet, it is all about restricting certain food groups and placing a disproportionate preference on one group in particular - ironically, the only food group that has the most potential for completely screwing up both blood sugar and weight management goals. Stuffing yourself full of carbs is just as immoderate as excluding them entirely. So there's another reason to connect dietary advice for people with diabetes and diabulemia. If non-moderate diets influence eating disorders, then frankly it's a miracle we don't all have diabulemia.

 

[Northerner]

I give up

 

[Twitchy]

DWED do an amazing job, & are right to campaign for a joined up approach to addressing diabulimia & supporting sufferers. But I think I can also see where Deus is coming from...over the past 3 decades I have repeatedly had more or less the same dietary advice as Deus re basing meals fundamentally on carbs...the way I read Deus' post (I may be wrong) is that presumably at some point in the mind of someone with diabulimia there is a tipping point where it goes from 'just' having bad feelings & image & the feeling of being out of control and tips over into drastic action (insulin restriction etc). Whilst a change in dietary advice probably wouldn't prevent this, maybe dodgy advice does have an effect in speeding the process? Maybe for someone in the early stages it would help give them a healthy way to be in control of their weight without drastic action? Admittedly, this assumes you can be 'a little' or 'slightly' disposed to eating disorders, & I don't know if that's true. It also assumes that by giving some control it won't just be leading the person onto a slippery slope, again, I don't know. I'm too tired to word this right tonight but pre pump I know I was getting extremely frustrated with weight gain & struggling to lose weight whilst on mdi, esp after so long being nagged to eat to the insulin. If I'd been younger at that point, I don't know if I'd have resisted the option of cutting my insulin. I suspect the only reason I wasn't overweight in my teens was luck & probably not brilliant control, but I've no records to check that. Whether diabulimia & dietary advice are linked or not, I think Deus has a point about the advice needing review, even if just to avoid unnecessary demoralisation of diabetics! 😱

But back to the original post - well done DWED - & fingers crossed the powers that be listen & get better support sorted & soon. It must be horrendous for sufferers & their families.