Type 1 Binge eating disorder

SueJB

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cold weather
Hi all,

I've found myself in a bit of a dark place recently surrounding my type 1 and ED, I just need a safe place to vent with people who understand, I hope that is okay.

I've been type 1 for 17 years, I'm now 27. By hba1c has been up and down over the years, slightly above target a lot of the time but never much cause for concern. As of yet (touch wood) I have got away with any complications as a result of my diabetes, only background retinopathy.

I was always an overweight child (apart from the months surrounding my diagnosis!) and for as long as I can remember I've been trying to lose weight. This is something I'm still battling with now and have been going round and round in circles with various slimming clubs.

Over the past 10 years I would say I've had very disordered eating - as yet unofficially diagnosed but have spoke openly to GP, DSN, diabetes psychologist and consultant about this topic. I can go weeks religiously carb counting and staying within range by eating well, but there are periods (currently on week 4) where I just don't care what I eat. I binge and binge and inject and inject. Sugars this week hit 25 and it was a real shock to my system but not enough to kick me out-of this horrible cycle.

I've got an appointment in a few days with my DSN so will talk to her about this,but just feel so alone and helpless and don't know what to do.

I know I am in control of what I do and what I eat, and I'm bloody frustrated with myself for not just pulling myself together, but having been diagnosed with depression I know it's not as simple as that!

Thank you so much for reading, I'm not sure what I expect from this post, I suppose to just be reassured I'm not alone!
You're not alone ever with everyone being here for you. Good luck and a warm hug
 
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Boy, reading all these posts makes me realise how not alone I am. Because alone is how we feel. Binge eating and over eating is more often than not driven by far too low glucose levels. So, the answer is about managing insulin, diet and excercise to avoid the lows and the highs. It is really really difficult and people that don't actually live with Diabetes really realy don't know what is it like and how hard it is. I am Type 1 and have struggled for years with weight and eating, and it is only now that I realise that the insulin and the low glucose drives appetite in a way no one can understand. From being on this Forum, I am learning that there are many people grappling and battling, and it is so important to know that you are not alone in this daily battle.
 

KateMeg

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18
Type of diabetes
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One thing that really helps me with this is trying to limit how much novorapid i'm taking. For me the more sugar I eat the more I want! When my bloods are over the 12/13 mark all i can think about is sugar. Trying to keep yourself full with fats and protein (try not to think calories!) will help to prevent you from wanting to binge, and hopefully help to break the cycle.
Boy, reading all these posts makes me realise how not alone I am. Because alone is how we feel. Binge eating and over eating is more often than not driven by far too low glucose levels. So, the answer is about managing insulin, diet and excercise to avoid the lows and the highs. It is really really difficult and people that don't actually live with Diabetes really realy don't know what is it like and how hard it is. I am Type 1 and have struggled for years with weight and eating, and it is only now that I realise that the insulin and the low glucose drives appetite in a way no one can understand. From being on this Forum, I am learning that there are many people grappling and battling, and it is so important to know that you are not alone in this daily battle.
Hi all,

I've found myself in a bit of a dark place recently surrounding my type 1 and ED, I just need a safe place to vent with people who understand, I hope that is okay.

I've been type 1 for 17 years, I'm now 27. By hba1c has been up and down over the years, slightly above target a lot of the time but never much cause for concern. As of yet (touch wood) I have got away with any complications as a result of my diabetes, only background retinopathy.

I was always an overweight child (apart from the months surrounding my diagnosis!) and for as long as I can remember I've been trying to lose weight. This is something I'm still battling with now and have been going round and round in circles with various slimming clubs.

Over the past 10 years I would say I've had very disordered eating - as yet unofficially diagnosed but have spoke openly to GP, DSN, diabetes psychologist and consultant about this topic. I can go weeks religiously carb counting and staying within range by eating well, but there are periods (currently on week 4) where I just don't care what I eat. I binge and binge and inject and inject. Sugars this week hit 25 and it was a real shock to my system but not enough to kick me out-of this horrible cycle.

I've got an appointment in a few days with my DSN so will talk to her about this,but just feel so alone and helpless and don't know what to do.

I know I am in control of what I do and what I eat, and I'm bloody frustrated with myself for not just pulling myself together, but having been diagnosed with depression I know it's not as simple as that!

Thank you so much for reading, I'm not sure what I expect from this post, I suppose to just be reassured I'm not alone!
 
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Alison54321

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This is difficult. Having diabetes is restrictive, and it's hard to stick to the rules for a long period, so at some level the desire to binge for a few weeks, is probably quite normal in a way, who wouldn't do that, if their diet was so restricted?

However, it's not good. I remember having periods when I didn't think about what I was eating at all, and I would binge on things. Now I'm very good, and just don't do it at all, but it was a very long journey to get here. I don't remember quite how I got did, there were a lot of mistakes made on the way.

We all have an inner critic that say unhelpful things to us, that are often the cause of behaviour that isn't good for us. Unfortunately, we all have a different inner critic, so there is no simple basic rules on how to overcome it.

It's just trying to understand yourself, without being critical, but with the intention of changing behaviour that is unhelpful to you. One of the roles a good counsellor can play is being the voice of a "reasonable adult" that helps to overcome the critical voice.

I think the advice above about accepting your weight, and just allowing you to be you is good advice, that's very much the reasonable adult voice speaking there. That is who you have to nuture in yourself. Hopefully, you can start to find the reasonable adult.
 
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It is a very difficult thing to manage, and people don't appreciate what goes into to keeping blood sugar stable between 4-6/7mm/l. My relationship with food has been made very difficult because of feeling the low blood sugars, then injecting to bring the glucose down, and gaining weight and then feeling down which drives the comfort eating. So you are not alone, but it feels like a lonely journey. I am trying to focus on nutrition and giving my body good things that can help it be well and healthy. I am also trying to lose the breads as well as alcohol. Alison has wise words. But it boils down to have stable blood sugars so that the other issues can be dealt with. It's hard, but you are not alone. Believe me.
 
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DCUKMod

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EasyHeart

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Hi, sounds like battle fatigue. It will have taken a while to have got this bad for you so it's important to allow yourself to take as much time as you need to restore yourself. Try to find 3 acts of self kindness you can do each day - not food related - simple low demand activies that allow you to create space to pause and breathe. This helps reduce overwhelm. When you have a bit of space you can remember what helped you get well in the past and make a conscious decision to reintroduce one small thing back into your daily life. Start with something you know you will succeed at and be kind to yourself- self compassion creates lots of possibilities to explore change. Good luck.
 
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ickihun

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This is not just a type 1 thing. In a way, it's a diabetic fatigue kind of thing because once in a while, it's great to pretend to not have to choose, not have to monitor, not have to control everything, it's just that for us, the consequences are so much worse.

It is nice to be around other Diabetics once in a while and express all the range of normal emotions
Burn out.

Like any condition which needs managing 'burn out' can occur.

Like I've said for a long time once another condition to manage is mixed with diabetes it makes management so much harder..... but not impossible.

For type1s it can make a huge difference as hypos/hypers can be in the dangerous zones, very quickly too.
Its harder for type1s when another additional pressure takes your mind away from daily (hour by hour) management.

Type1s with ED must be very scary but thankful good experience on here.
The post grabbed my attention so I felt rude not to read.

Type2s management is far different as not as urgent to iron out the sugary spikes. Mainly liver induced, for me. Type1s spikes can kill but are due to no insulin or very little.
Sooo different.
 
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DCUKMod

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Burn out.

Like any condition which needs managing 'burn out' can occur.

Like I've said for a long time once another condition to manage is mixed with diabetes it makes management so much harder..... but not impossible.

For type1s it can make a huge difference as hypos/hypers can be in the dangerous zones, very quickly too.
Its harder for type1s when another additional pressure takes your mind away from daily (hour by hour) management.

Type1s with ED must be very scary but thankful good experience on here.
The post grabbed my attention so I felt rude not to read.

Type2s management is far different as not as urgent to iron out the sugary spikes. Mainly liver induced. Type1s spikes can kill but are due to no insulin or very little.
Sooo different.

This is way off topic, but I would robustly challenge your assertion that the majority of T2 blood sugar spikes are due to liver activity. My view is that some are due to liver dumping, but the vast majority are due to eating and drinking.

However, as that point is off-topic to this important matter of binge eating, I won't comment further.
 

ickihun

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This is way off topic, but I would robustly challenge your assertion that the majority of T2 blood sugar spikes are due to liver activity. My view is that some are due to liver dumping, but the vast majority are due to eating and drinking.

However, as that point is off-topic to this important matter of binge eating, I won't comment further.
Sorry I'll edit adding..... 'for me'. Like you say I agree that sentence not relevant to some type1s. Thanks for correction. :)
 

bjones1927

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Hayley.

Wow. I could've wrote this. I'm a type 1 too. I am undiagnosed with an ED but reading this has made me want to ring my diabetic nurse up and cry like a baby. I cant even bring myself to talk about it to them. I've been to a doctor who told me its normal to binge, we all do it. She told me to be accountable when a binge comes along and talk about it to someone. I cant afford private therapy but i fell like what im doing is self harm. My hba1c is 11. I'm either sky high or having hypos. I'm exhausted with it. You are not alone and i will message you too xx

Me too, I just can't find a balance I'm 24, 25 in Feb and my weight is up and down. Due to some other problems in my life sometimes it's easy to binge and eat takeaways and forget about problems.. that's what I do anyway. I've found fruit is good for me when I feel like I want to eat crisps and chocolate.
 
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Juicyj

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Hello @bjones1927 Have you spoken to your DSN if it's having an impact on your control then it will help to see what support is available to you ?

It might help but have you thought about trying 'mindfulness eating', it's simply eating a meal without any distraction, so no phones, TVs iPads etc, and eating each mouthful slowly thinking about how it was made, where did the ingredients come from , what countries etc, by eating more mindfully gives the brain time to acknowledge what's being eaten and to know when you are full. We live in an age where we are bombarded all the time so having time to sit and eat without distraction will help slow everything down and appreciate food more and to stop bingeing.
 
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HaggeNat

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Hi all,

I've found myself in a bit of a dark place recently surrounding my type 1 and ED, I just need a safe place to vent with people who understand, I hope that is okay.

I've been type 1 for 17 years, I'm now 27. By hba1c has been up and down over the years, slightly above target a lot of the time but never much cause for concern. As of yet (touch wood) I have got away with any complications as a result of my diabetes, only background retinopathy.

I was always an overweight child (apart from the months surrounding my diagnosis!) and for as long as I can remember I've been trying to lose weight. This is something I'm still battling with now and have been going round and round in circles with various slimming clubs.

Over the past 10 years I would say I've had very disordered eating - as yet unofficially diagnosed but have spoke openly to GP, DSN, diabetes psychologist and consultant about this topic. I can go weeks religiously carb counting and staying within range by eating well, but there are periods (currently on week 4) where I just don't care what I eat. I binge and binge and inject and inject. Sugars this week hit 25 and it was a real shock to my system but not enough to kick me out-of this horrible cycle.

I've got an appointment in a few days with my DSN so will talk to her about this,but just feel so alone and helpless and don't know what to do.

I know I am in control of what I do and what I eat, and I'm bloody frustrated with myself for not just pulling myself together, but having been diagnosed with depression I know it's not as simple as that!

Thank you so much for reading, I'm not sure what I expect from this post, I suppose to just be reassured I'm not alone!
Hi all,

I've found myself in a bit of a dark place recently surrounding my type 1 and ED, I just need a safe place to vent with people who understand, I hope that is okay.

I've been type 1 for 17 years, I'm now 27. By hba1c has been up and down over the years, slightly above target a lot of the time but never much cause for concern. As of yet (touch wood) I have got away with any complications as a result of my diabetes, only background retinopathy.

I was always an overweight child (apart from the months surrounding my diagnosis!) and for as long as I can remember I've been trying to lose weight. This is something I'm still battling with now and have been going round and round in circles with various slimming clubs.

Over the past 10 years I would say I've had very disordered eating - as yet unofficially diagnosed but have spoke openly to GP, DSN, diabetes psychologist and consultant about this topic. I can go weeks religiously carb counting and staying within range by eating well, but there are periods (currently on week 4) where I just don't care what I eat. I binge and binge and inject and inject. Sugars this week hit 25 and it was a real shock to my system but not enough to kick me out-of this horrible cycle.

I've got an appointment in a few days with my DSN so will talk to her about this,but just feel so alone and helpless and don't know what to do.

I know I am in control of what I do and what I eat, and I'm bloody frustrated with myself for not just pulling myself together, but having been diagnosed with depression I know it's not as simple as that!

Thank you so much for reading, I'm not sure what I expect from this post, I suppose to just be reassured I'm not alone!
Hi, I’ve just joined the forum and 100% identify with your post at this moment in time. I see you posted a year ago and wondered if you have come through this and any advice on what has worked to help? Many thanks!!
 
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HaggeNat

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Hi there

I'm sorry that you are going through this it's so hard to get help for disordered eating behaviour rather than a straight up ED like anorexia or bullimia. That having been said you do sound like you may fit the criteria for binge eating disorder and there are now specific NICE guidelines for T1s with Binge Eating Disorder including swift treatment due to increased physical health risk. If you are a dwed member we have some guidelines and material you can take in. I also might know HCPs in your area if you want to email me via the DWED website contact us section with your location x

It's really easy to blame your self for not being able to 'get a grip' but if we could have thought our way out of this then we would have, I know qualified medical doctors with eating disorders, it's no ones fault, just like getting T1.

Have you tried any treatments in the past?
Hi, I’ve just joined the forum and wondered if you could also send me any information on this as I am struggling just now with Binge eating , many thanks!
 

Juicyj

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Hello and welcome to the forum @HaggeNat

Can you explain more about your circumstances and diabetes care ?
 

HaggeNat

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Hello and welcome to the forum @HaggeNat

Can you explain more about your circumstances and diabetes care ?
Thank you. I have had Type 1 diabetes for 20 years and have been on a pump for 15 years. I have always managed reasonably well till the last year or so when I started to get burnout alongside anxiety and depression. I have put on quite a bit of weight since diagnosis and have always been a comfort eater but find myself binge eating late at night. Any ideas on how to stop this and to understand why I am doing this would be greatly appreciated as I feel it is a form of self harm!!
 

HaggeNat

Member
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6
Thank you. I have had Type 1 diabetes for 20 years and have been on a pump for 15 years. I have always managed reasonably well till the last year or so when I started to get burnout alongside anxiety and depression. I have put on quite a bit of weight since diagnosis and have always been a comfort eater but find myself binge eating late at night. Any ideas on how to stop this and to understand why I am doing this would be greatly appreciated as I feel it is a form of self harm!!
I have been offered extra support at my annual review for the burnout and have a follow up booked with my diabetes specialist nurse and we are going back to basics and a Dafne course as they didn’t exist back then but did not mention the eating as I thought it was just me till I saw this post!!!
 

Juicyj

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Hello @HaggeNat The easiest way to avoid binge eating is to remove the temptation, just clear out your cupboards, restock on stuff which will have minimal impact on your BG levels, olives, nuts, cheese but will fill you up. Try and also stop for a moment when you get the urge to work out what's going on in your head at the time, so keep a diary and in it write this down, learning what's triggering this will help you figure out why you're doing it. Getting support is vital though so doing DAFNE will help get you back on track and at least speak to other t1's as well as healthcare professionals, but please do fess up and admit to them you are struggling with this, they are not going to judge you but maybe able to put you in touch with your local mental health team who could help with something like CBT which will help you.