Outrage! DAFNE after 1 year

tim2000s · Jan 14, 2015

pinewood said:
I've found it interesting to read all the criticisms about DAFNE telling people to eat what they want and inject accordingly. To me, this is a reassuring positive. I haven't been on the course yet and I was only diagnosed with T1 a month ago, but I have to admit that probably the ONLY thing that has kept me going through this stressful period of my life is the reassurance that I can eat as normal and not change my diet. Not everyone wants to move on to an ultra low-carb diet to manage their diabetes and my understanding is that, with reasonable exercise, I should not have to change what I eat and should carry on as normal - if I feel like a cookie or ice cream, I should have it and learn how to deal with the insulin dose accordingly. In my opinion it's hard enough living with T1 without having to restrict what you eat and having to take away some of life's food pleasures!

I think this is where the messages being purveyed become very confused. With MDI treatment and DAFNE, you can eat what you want, when you want. In order to maintain a good level of control, you maybe shouldn't always eat what you want, when you want.

Having the ability to understand how much insulin is required to stop your glucose levels spiking post-prandially based on the content of the food is very important. Understanding the timing of delivery of that insulin is also very important. Both of these affect the height of the spikes and when done properly, reduce the Hba1C, reducing the risk of complications.

The issue at hand is that for many diabetics, eating normally means eating badly, and that's where the controversy arises. As mentioned in the other thread that @smidge created after her DAFNE course, should the DAFNE simply describe how to manage your diabetes in relation to what you eat, or should it really promote ways of eating that will enable you to find it easier to control your diabetes and blood sugar?

As an example, when I was diagnosed in 1988, (in the days before proper food labelling and the internet) we were advised to buy a book called "Countdown" which listed the majority of foods and provided carbs (in exchanges of 10g) per serving/portion/weight. It included fresh and non-fresh food. This book was split into Green, Amber and Red sections. Foods in the Amber and Red were advised to be eaten infrequently because they were not that great in terms of Diabetic control. This is where I learned to carb count. I distinctly remember that my meals were composed of 7 exchanges (70g of carbs) per meal as I had a lot of weight to recover having been running high blood glucose for a long time. Transposing this onto MDI was fairly simple (and in the first instance was an insulin to carb ratio of about 1u:6g). It was very clear in these circumstances what was considered good and bad, and I was encouraged to eat "good" carbs (starchy, low GI).

This is the question that a lot of people are asking. Should DAFNE encourage what should be "Normal eating for Diabetics" or simply "Normal eating for the population at large who won't get complications"?

pinewood · Jan 14, 2015

Daibell said:
It all depends on how much you eat and how many carbs. If you eat too mnay carbs you will gain weight, become insulin resistant and get into an insulin spiral. I take your point but no one on insulin can eat normally if that means the typical Western diet. Yes, you don't need to ultra low-carb.

Point taken. Everything in moderation, I suppose. I ate pretty healthily before being diagnosed and I exercise very regularly too, but I have never denied myself the odd treat and don't intend to change that now that I've been diagnosed with T1.

donnellysdogs · Jan 14, 2015

pinewood said:
Point taken. Everything in moderation, I suppose. I ate pretty healthily before being diagnosed and I exercise very regularly too, but I have never denied myself the odd treat and don't intend to change that now that I've been diagnosed with T1.

I've had odd, rare treat now and again. Never seen a dietitian, never been on dafne. Never had advice from any health professional except how to count exchanges when taken into hospital 30 years ago.

The thing that I am sure has helped me was that one and only hour session with the nurse telling me about 1 digestive being one exchange and two rich teas being 1 exchange - on my 2nd day of my stay in hospital. She also told me and my parents quite directly about good food to eat.. Meat and veg. No treats were ever mentioned.

I learnt myself how to bend the rules occasionally to have treats.

However, I was given such clear guidance on the foods...however, there wasn't all the dreadful food around then. I still remain with having treats rarely...

I have remained at 8/10 the vast majority of my 50+ years and no complications.

A lot of this normal eating with t1 is just not good eating. The foods people are having are just loaded with carbs AND fats. So this is just optimising the swings in levels that t1's get. I really believe that my body has benefitted from NOT having those swings in levels. Eating 'properly' and being taught properly from day 2 has been my reason for keeping my levels pretty flat and stable.

I see the effects that these odd treats have on me and having to bolus huge amounts and having to put pump on 250% overnight... Trouble is these foods are just ate normally by some T1's....

tim2000s · Jan 14, 2015

Just had an interesting conversation with the optician at my annual visual (rather than DECS) check up. Boots now do a full photos of the eye screening, and while I have the expected background retinopathy, given the exercise and insulin changes of the past six months, it's not unexpected and is very minor. But it raised an interesting discussion.

Her comment was that very few diabetics understand that while Hba1C is an important indicator for overall blood glucose levels, someone can come in with an Hba1C level that is 7% and still have level two or three retinopathy as a result of that level being extremely variable and swinging from high to low a lot. Not many of her patients understand this or that high blood glucose levels can lead to changes in vision temporarily. I had quite a long discussion about this, and her point of view was that very few diabetics that she sees actually have any depth of knowledge of how diabetes affects the eyesight and it was a refreshing change to have someone who "gets it" talk to her.

This brings me back to DAFNE though. We are on the topic of Dose Adjustment for Normal Eating, and while we have discussed what should be classed as normal, it's fair to say that, for most people, while having an Hba1C improvement from 8.5% to 7% is great, if they achieve this with a wide variance they will suffer vision problems.

Whilst DAFNE provides a framework for theoretically managing the variance of blood glucose levels, the reality is that for many this comes with wider fluctuations in actual levels. Should DAFNE therefore promote ways of eating that help to reduce the variance of blood glucose as well as provide the mechanism for managing doses? The same "What is normal for a diabetic" question.

To look at it another way, if you are a coeliac, you absolutely can't eat gluten without noticeable and sever consequences. As a diabetic, because we have developed Insulin, eating what you like is seen as much less of an issue, yet the reality is that eating a sensible, non-NHS healthy plate is more likely to manage the condition better. For many conditions, this goes without saying. Why shouldn't it for diabetes?

donnellysdogs · Jan 14, 2015

I've tried to monitor the swings in my bloods pretty much since diagnosis 30 years ago. I was told to avoid them. Even better with SD monitoring on a pump...i have said lots of times on this forum that I believe that my non retinopathy after 30 years is due to having less swings.
I did have a spell of my background retinopathy just before getting pump and for about 6 months after.. But in 30 years to now be back to no retinopathy for past 3 years again is fantastic.
My bloods aren't perfect. When I have a set failure the sudden increase is horrendous but this is rare thankfully.

I have never been ona dafne course, so do they actually mention nowadays about avoiding the seings in bloods?

I don't think there is any proof of minimal swings helping retinopathy being avoided though...

Agree that foods and the eat well plate can encourage the swings in levels...

Heathenlass · Jan 14, 2015

Whilst DAFNE provides a framework for theoretically managing the variance of blood glucose levels, the reality is that for many this comes with wider fluctuations in actual levels. Should DAFNE therefore promote ways of eating that help to reduce the variance of blood glucose as well as provide the mechanism for managing doses? The same "What is normal for a diabetic" question.

I couldn't agree more .

On my DAFNE course, lunchtimes were supervised (!) by the educators in the hospital canteen. The others chose chips, curry and rice more or less each week. I chose a cheese salad, and brought a Nine Bar with me , as I know there is practically b*gger all that I can eat in the bastion of " Healthy Eating " . Only my choice was commented on, as there would be " not enough carbs " and " You won't need to bolus for that " ( Oh but I do ! ) . The difference was that for me, that was in fact "normal eating " , and my bolus was 0.5 to 1 unit depending on my BG levels, whilst the others needed a very large bolus PLUS a correction dose .

Further comments were made on my small TDD, despite me being diagnosed many years ago, far longer than the others, that I was " very unusual " . I suppose that I am, as I can't eat grains, don't like rice or potatoes and never have. I have always actively avoided sugar as that was the way I was taught to begin with , so it's a life long thing. I was also the only person not to have weight issues.

Finally, after five weeks of what I ate being scrutinised ( them hearing my food diary being read out was a hoot ! ) plans were made for the follow up meeting which was the week before Christmas. It was suggested we bring mince pies and cakes

I feel it would have been helpful for more information on food and the effects on diabetics to be part of the course, that potatoes are glucose chains and spikes can be avoided by substitutions.

At the end of the day, if eating something on a regular basis spikes you hugely, initially, even though a dose can bring your bloods down to an " acceptable " level hours later, that is a significant part of the day when your BG is very high. But then again, testing two hours after is not encouraged, only before the next meal with no clue what your bloods have been in between . So yes, spikes and troughs, not levelish at all, and with the potential for damage. Surely it makes sense to not spike so high by a) testing to find out what spikes you and how high, and b) having the knowledge to make informed choices in what are less likely to do so ?

Signy

tim2000s · Jan 14, 2015

Heathenlass said:
I couldn't agree more .
I have always actively avoided sugar as that was the way I was taught to begin with , so it's a life long thing.

This. I had exactly the same thing when diagnosed. Sugar was what you ate when you were hypo. The result? After moving to MDI, sugar became more of a guilty pleasure, and as a rampant baker and having a ridiculously sweet tooth, it's a good job it is a guilty pleasure too!

noblehead · Jan 14, 2015

pinewood said:
I've found it interesting to read all the criticisms about DAFNE telling people to eat what they want and inject accordingly. To me, this is a reassuring positive. I haven't been on the course yet and I was only diagnosed with T1 a month ago, but I have to admit that probably the ONLY thing that has kept me going through this stressful period of my life is the reassurance that I can eat as normal and not change my diet. Not everyone wants to move on to an ultra low-carb diet to manage their diabetes and my understanding is that, with reasonable exercise, I should not have to change what I eat and should carry on as normal - if I feel like a cookie or ice cream, I should have it and learn how to deal with the insulin dose accordingly. In my opinion it's hard enough living with T1 without having to restrict what you eat and having to take away some of life's food pleasures!

There's very little criticism of the course and if you do a search in the forum search facility you will find 100's, perhaps 1000's of posts from members who have found the course extremely helpful and helped get them back onto the right track.

The course itself doesn't tell you what you should eat, it just gives you the knowledge to match your insulin to the food you eat, diet is an individual choice just as it is for anyone who doesn't have type 1 diabetes.

The best approach is not to go over the top when eating carbs and keep them in moderation, and if you fancy something sweet have it as a special treat , say once in a while and not something that you eat everyday, but your right type 1 diabetes is hard to live with and we shouldn't get too obsessed with our diets, the best guide is your pre & postprandial bg readings which will determine which foods (and in what quantities) you can eat yourself.

There's is, and never will be one diet that suits all, as we are all individuals Pinewood, just find your own way and do the course when you get the opportunity.

Emmotha · Jan 14, 2015

My course recommended what to eat as in a quarter of a plate of carbs at every meal or something stupid like that. Which strikes me as more of a "beginner" level of management.

They also said it was fine to peak up at 12 after meals as long as you were back down 4 hours later.

Obviously I have not followed any of this and decided I didn't want to spike at all so have low carbed.

But the things I found useful were more how to work out bolus and basal. Then the day to day living like how to go on holiday etc.

I agree DAFNE is not the best and seems old fashioned, but I think it's better than nothing :-/

phoenix · Jan 14, 2015

re swings, sugar and normal eating.
The big problem is the definition of what is normal eating. This quite recent French article based on official documentation. It still stresses that the diet for T1s is not really different to the diet everyone should follow ie what should be a normal eating pattern.. It isn't totally liberal though, definitely not advice to eat totally freely.
.It mentions that you shouldn't avoid carbohydrates but that you should control them' to avoid excessive fluctuations' . (controlled doesn't necessarily mean ultra low ,it's determined by age/gender/weight/activity and the amount is still supposed to be prescribed by a dietitian ) Restriction of sugary items is important to avoid the highs and there is now a mention of avoiding artificial sweeteners because it says you maintain a taste for sweet things. (that's new) Eating high fat is not encouraged but the recommendations for fat are not actually that low at 35-40% of diet in the general guidelines . Lots of fibre from veg and fruit at each meal is encouraged (and may even be supplemented to add more)
I suspect if DAFNE tried to introduce advice like this(and it is evidence based) then they would be people on this forum who would consider it far too high in carbohydrates but also people who feel that it is somewhat restrictive since it insists on 3 meals a day and no snacks (unless you are involved in exercise)
I've quoted most of it below if anyone wants to read it.

added; I have to say that I was also told to eat a quarter of a plate starchy carbs (half a plate veg, 1/4 protein plus some dairy and a fruit) . There has though to be some adaptation; my quarter of a plate might not need to be piled as high as someone who was younger and fitter. It does help to give a balanced meal and balance is normally advocated since it is more likely to result in coverage of as wide a range of vitamins and minerals as possible

http://www.eurekasante.fr/maladies/metabolisme-diabete/diabete-type-1.html?pb=alimentation (with the help of google translate.

People who are newly diagnosed with diabetes often feel they can no longer eat carbohydrates (pasta, rice, potatoes, cereals, cakes, etc.). In fact, it is not so: this false idea dates back where insulin was not available and where the survival of diabetics depended almost complete suppression of carbohydrates in their diet. The main rules of the diet of patients with type 1 diabetes are not fundamentally different from those that each of us should follow. These rules are designed to ensure a balanced diet, varied and adapted to the patient's physical activity, help control blood sugar, to avoid excessive weight gain and prevent cardiovascular complications. In children and adolescents, they also aim to ensure their growth. These rules are adapted to the characteristics of each patient, dosage and rate of taking insulin, physical activity, weight, eating habits and preferences, etc. For this reason, regular consultation with a dietician is an important part of medical care in case of type 1 diabetes.

Control carbohydrate intake .The main objective of controlling the intake of carbohydrates (sugar) is to avoid excessive fluctuations in blood sugar, either because of over consumption of foods high in sugars or inadequate intake of carbohydrate meals or during physical effort (exposure to the risk of hypoglycaemia). For this reason, carbohydrate intake should be divided into three meals without snacking between meals and not skipping meals. Only diabetics who have an intense physical activity can reserve some of their main meals (a fruit, dairy, for example) for one or two snacks taken between meals.

For people with diabetes, it is better to choose carbohydrates naturally contained in whole grains and pulses rather those found in cakes, sweets, jams, breakfast cereals, etc. This is especially important in children with diabetes to prevent nocturnal hypoglycemia. For each patient, the maximum amount of carbohydrate to consume each day is determined by the dietician by sex, age, weight and activity of the patient but also by the injection regime

Artificial sweeteners are "sweetening" products which are not ( a naturally occurring) part of the carbohydrates . These are food additives used to impart a sweet taste to foods. We distinguish sugar substitutes (polyols) and intense sweeteners (saccharin, aspartame, acesulfame K and cyclamate). The use of these sweeteners is not recommended for people with diabetes because they maintain the taste for sweet foods.

Reduce consumption of fatty foods ..... snip (it mentions particularly animal fats but says to eat oily fish).

Increase fibre intake For people with diabetes, eating foods rich in fibre (fruits and vegetables, compotes with no added sugar ) at each meal slows sugar absorption by the digestive system and helps control sugar levels in the blood. The amount of fibre can also be increased by the consumption of bran, flax seed, psyllium, buckwheat, etc.
Limit alcohol intake..... snip (1 drink a day women, 2 drinks a day men; warning about alcohol and hypos.)

lizdeluz · Jan 14, 2015

tim2000s said:
This. I'm glad I'm not the only one who feels this way. I'm not sure they teach you about it on DAFNE though

Packets of jelly babies. When I'm hypo I tend to go into 'determined panic' mode. I think that's better than 'chilled everything's fine' mode. I find that this one can sneak up on me.
DAFNE might as well teach their attendees about it.
However, the 'even keel mode' is going to be our preferred option; I just think it would be a good idea for T1s to be recognised as doing a good job when they achieve this state from time to time.

lizdeluz · Jan 14, 2015

tim2000s said:
I think this is where the messages being purveyed become very confused. With MDI treatment and DAFNE, you can eat what you want, when you want. In order to maintain a good level of control, you maybe shouldn't always eat what you want, when you want.

Having the ability to understand how much insulin is required to stop your glucose levels spiking post-prandially based on the content of the food is very important. Understanding the timing of delivery of that insulin is also very important. Both of these affect the height of the spikes and when done properly, reduce the Hba1C, reducing the risk of complications.

The issue at hand is that for many diabetics, eating normally means eating badly, and that's where the controversy arises. As mentioned in the other thread that @smidge created after her DAFNE course, should the DAFNE simply describe how to manage your diabetes in relation to what you eat, or should it really promote ways of eating that will enable you to find it easier to control your diabetes and blood sugar?

As an example, when I was diagnosed in 1988, (in the days before proper food labelling and the internet) we were advised to buy a book called "Countdown" which listed the majority of foods and provided carbs (in exchanges of 10g) per serving/portion/weight. It included fresh and non-fresh food. This book was split into Green, Amber and Red sections. Foods in the Amber and Red were advised to be eaten infrequently because they were not that great in terms of Diabetic control. This is where I learned to carb count. I distinctly remember that my meals were composed of 7 exchanges (70g of carbs) per meal as I had a lot of weight to recover having been running high blood glucose for a long time. Transposing this onto MDI was fairly simple (and in the first instance was an insulin to carb ratio of about 1u:6g). It was very clear in these circumstances what was considered good and bad, and I was encouraged to eat "good" carbs (starchy, low GI).

This is the question that a lot of people are asking. Should DAFNE encourage what should be "Normal eating for Diabetics" or simply "Normal eating for the population at large who won't get complications"?

A good explanation of why the DAFNE. (DAFYDD) I knew was confused.

phoenix · Jan 14, 2015

When I'm hypo I tend to go into 'determined panic' mode. I think that's better than 'chilled everything's fine' mode. I find that this one can sneak up on me

I tend more to the everything's fine mode, 'don't interfere (indeed please don't talk to me),I will take the minimum amount to get out of this'. It's only very rarely that I feel I want to eat lots (maybe it helps that I hate glucoses tablet and that's what I usually use, jelly babies would be even worse! )

lizdeluz · Jan 14, 2015

noblehead said:
There's very little criticism of the course and if you do a search in the forum search facility you will find 100's, perhaps 1000's of posts from members who have found the course extremely helpful and helped get them back onto the right track.

The course itself doesn't tell you what you should eat, it just gives you the knowledge to match your insulin to the food you eat, diet is an individual choice just as it is for anyone who doesn't have type 1 diabetes.

The best approach is not to go over the top when eating carbs and keep them in moderation, and if you fancy something sweet have it as a special treat , say once in a while and not something that you eat everyday, but your right type 1 diabetes is hard to live with and we shouldn't get too obsessed with our diets, the best guide is your pre & postprandial bg readings which will determine which foods (and in what quantities) you can eat yourself.

There's is, and never will be one diet that suits all, as we are all individuals Pinewood, just find your own way and do the course when you get the opportunity.

The really good thing about the DAFNE class is that, despite our differences, the attendees suddenly found that they were not alone with this s*****g condition.

ConradJ · Jan 14, 2015

Spiker said:
Yes, this advice is intended to reassure people, so that they don't get overwhelmed. It can take many years to realised that this reassuring advice isn't actually correct. It's just a way of managing our psychological state.

Which is all very well until the complications begin, whereupon the diagnosed needs lots of expensive and invasive treatment, time off work / redundancy / early retirement, etc. as well as counselling. In the meantime, their marriage has probably fallen apart and the next thing is they're homeless and needing a support worker.

And all because no one had the 'heart' (i.e the gumption) to be honest about our condition.

Do they take the same approach with celiacs or those with a nut allergy?

Doctor/nurse: You're celiac.

Patient: Oh, what does that mean?

D/n: Oh, it's nothing really; if you eat gluten you could end up with your stomach being destroyed, but it's okay really because, you know, that may or may not happen in a long time. And there's much we can do, like colostomy bags, transplants, funerals. So, go ahead and have a few cakes if you feel like treating yourself.

Patient: is there any advice or information?

D/n: Why yes, here's a copy of the 'eat well plate'... look, see? Plenty of yummy breads, cereals & pasta... just make sure it's all low - Gi because that will slow the destruction of your gut. Well, time's up! Good luck, see you in six months or so - tata!

ConradJ · Jan 14, 2015

pinewood said:
I've found it interesting to read all the criticisms about DAFNE telling people to eat what they want and inject accordingly. To me, this is a reassuring positive. I haven't been on the course yet and I was only diagnosed with T1 a month ago, but I have to admit that probably the ONLY thing that has kept me going through this stressful period of my life is the reassurance that I can eat as normal and not change my diet. Not everyone wants to move on to an ultra low-carb diet to manage their diabetes and my understanding is that, with reasonable exercise, I should not have to change what I eat and should carry on as normal - if I feel like a cookie or ice cream, I should have it and learn how to deal with the insulin dose accordingly. In my opinion it's hard enough living with T1 without having to restrict what you eat and having to take away some of life's food pleasures!

Good luck to you @pinewood ... perhaps your luck will hold out, seeing as you're only a recent newcomer and the meds, info and technology is all so much better.

But believe me when I say this: carbs are the dark side of the meal plate for us... Once you start down the path of carbs and corrections forever could it dominate your life!

Nyadach · Jan 20, 2015

pinewood said:
I've found it interesting to read all the criticisms about DAFNE telling people to eat what they want and inject accordingly. To me, this is a reassuring positive. I haven't been on the course yet and I was only diagnosed with T1 a month ago, but I have to admit that probably the ONLY thing that has kept me going through this stressful period of my life is the reassurance that I can eat as normal and not change my diet. Not everyone wants to move on to an ultra low-carb diet to manage their diabetes and my understanding is that, with reasonable exercise, I should not have to change what I eat and should carry on as normal - if I feel like a cookie or ice cream, I should have it and learn how to deal with the insulin dose accordingly. In my opinion it's hard enough living with T1 without having to restrict what you eat and having to take away some of life's food pleasures!

Yes very much so. Food shouldn't be a chore, it's part of every day and we think enough about it converting it to numbers as is. DAFNE doesn't tell you anywhere what to eat, it's about giving us the tools to eat what we choose to eat. And that's the thing, it's about giving us the tools for it, and how we use them is up to us. Diets are a personal thing to us just like our lifestyles are, not one of us is the same as the next.

On the initial topic of this thread, it's simply not done at diagnosis due to the honeymoon period. While a run down of the basics should be done with a newly diagnosed diabetic so they can handle things and get used to them, going directly into insulin ratios and changing doses when their bodies are changing things itself is more something for their diabetes team to aid them with and educate them over the honeymoon period. Going right into DAFNE at the beginning would be quiet crazy in my opinion. I can still remember the big orange bible I was given listing every food under the sun...it was handy yes, but also quiet overwhelming as a kid.

PepperTed · Jan 20, 2015

I had been diagnosed for about 10 years before I was offered a DAFNE course. It was a revelation and made me feel so much more in control and empowered to manage my diabetes. Would I have felt the same as an 11 year old child? No, and I'm guessing my mum would have had to attend the course with me. It was hard enough for her helping me manage static doses, she sat watching the clock for months after I was diagnosed to make sure I didn't miss an injection. I think trying to understand and put DAFNE into place would have been way too much for her.

There is a lot to adjust to when you become diabetic. I've seen lots of other people in my life diagnosed, mostly with type 2, and they generally have not handled it well. I think DAFNE would be far too overwhelming for most patients right after diagnosis. I would say 6-12 months is a good time to let those emotions settle down before the wealth of information you get at DAFNE.

The people on this forum are the ones who have sought out information beyond what they're fed by their health care teams, who want to manage their diabetes proactively and have all the facts. So I'm not surprised that most of the replies here say they would have wanted DAFNE as soon as they were diagnosed. But I actually do agree with the guidelines that it should be delayed a bit.

Replenish · Jan 20, 2015

Dose Ajustment For Normal Eating.......... ha ha I just thought it was some medical acroynym......

What is considered too high a peak post meal? +10?

PepperTed · Jan 20, 2015

Replenish said:
Dose Ajustment For Normal Eating.......... ha ha I just thought it was some medical acroynym......

What is considered too high a peak post meal? +10?

I've seen different figures quoted in different places. Generally, for two hours after eating, up to 10 would be considered okay as long as it comes down to normal ranges before four hours are up. I've also seen 11 and 12 quoted but, personally, I like it to stay under 10.

Edit: I just spoke to my nurse, I'm calling her hourly with BG readings since I just started on the pump. She mentioned in the call that they expect BG to rise 2.8 an hour after eating, even if you have given the correct bolus. Thought I'd mention that here

Outrage! DAFNE after 1 year

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