I am a 53 year old women in the uk who got diagnosed with type 1 diabetes at the age of 29. I developed an eating disorder early in my life and I have been severely obese. I was first wrongly diagnosed as type 2 because of my weight and it took another 10 years and a gastric bypass to see that I actually had type 1. my weight loss was great with my gastric bypass for the first year as I really had no appetite. Then after a year my addiction to god started again and my bypass ouch could take more and more food. To avoid putting on weight I cancelled my insulin when binge eating. 14 years later I have no feelings in my feet, irregular heart beat, retinopathy and surely other things looming. I want to live but I cannot change my addiction to food- every emotion I answer with food. Is there a support group for someone C R A Z Y like me?? Please if there is anybody with ideas reach out to me. I am really low, depressed and cannot see a light at the end of the tunnel…..
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Diabulimia- can anybody help
- Thread starter MaddyCrow
- Start date
- Status
Inka
Well-Known Member
- Relationship to Diabetes
- Type 1
You’re not crazy @MaddyCrow and you’re not alone. Eating disorders are more common in people with diabetes and the diabetes just makes them so much harder to deal with.
I strongly suggest you speak to BEAT:
https://www.beateatingdisorders.org.uk/get-information-and-support/
You could also give Diabetes U.K. a ring. Their number is at the top right of this page. They have some lovely, caring people on their phone lines.
There is light at the end of the tunnel. Eating disorders can be beaten or, at least, kept in their cage so they have as little impact on you as possible. Have you spoken to your DSN about the diabulimia? You won’t be the first person who’s struggled.
Sometimes counselling and therapy can help too. Your GP might be able to point you towards that, or you could pay yourself. It sounds trivial but just being able to talk can help you work things through in your head and make you feel so much more positive. You can also ‘talk’ here. There are lots of kind, helpful people here.
I strongly suggest you speak to BEAT:
https://www.beateatingdisorders.org.uk/get-information-and-support/
You could also give Diabetes U.K. a ring. Their number is at the top right of this page. They have some lovely, caring people on their phone lines.
There is light at the end of the tunnel. Eating disorders can be beaten or, at least, kept in their cage so they have as little impact on you as possible. Have you spoken to your DSN about the diabulimia? You won’t be the first person who’s struggled.
Sometimes counselling and therapy can help too. Your GP might be able to point you towards that, or you could pay yourself. It sounds trivial but just being able to talk can help you work things through in your head and make you feel so much more positive. You can also ‘talk’ here. There are lots of kind, helpful people here.
rebrascora
Well-Known Member
- Relationship to Diabetes
- Type 1
- Pronouns
- She/Her
Hi and welcome to the forum.
So sorry to hear that you have struggled with your diabetes and an eating disorder and you are now suffering complications.
I too have difficulties with my relationship to food and I am very much an all or nothing person. I was a sugar addict and comfort eater pre-diagnosis but I used all the negative feelings I had at diagnosis (guilt and embarrassment etc) to motivate me to change..... I too was initially assumed to be Type 2 and in some respects that helped me because I went all out to try to reverse it by going very low carb. By the time they figured out that I was actually Type 1, I had found that my comfort eating and cravings were greatly reduced by following a low carb way of eating. I also benefitted in other respects in that my 20+yr acute migraine problem stopped when I changed my diet, my joints were much less painful and I lost weight. I started to feel stronger and fitter and healthier than I had in a lot of years and without the cravings I was in much better control of my eating.... and I like control. When I started insulin, I was told to eat normally, but I had no real idea what normal was because I had gone from one extreme to the other ie. very high carb to very low carb and I didn't really trust myself to go back to eating a normal amount of carbs because I knew it was a slippery slope for me. I had a couple of weeks were I increased my carb intake a bit but I felt like it was dangerous ground so I stuck with low carb. That was 4 years ago (I was diagnosed late in life) and I now feel that I can remain low carb for the rest of my life, give or take the odd social occasion where I am left with little choice. I have significantly increased my fat intake as this makes the food I eat satisfying and enjoyable and slows down my digestion so that I don't get peaks and troughs and I find this works pretty well for me. I am not saying that I don't fall off the wagon occasionally but it is only for a day or two at the most before I actually long for a refreshing salad and my control back. I really enjoy my food, maybe more now than I did before because it is almost like I eat in colour now (not just looks wise, but taste wise too). I savour my special treats and I make sure I have a treat every day, sometimes more than one. My main treat of the day is a coffee with real double cream in the morning and I really like to be "in the moment" with that coffee. I know it sounds cliched but I think part of the change in my mentality is eating my food more slowly and seeking out the individual flavours within it and texture is really important too. I really like crunchy foods much more now than I did before.
Anyway, I appreciate that my disordered eating problem was much less severe than yours, but this is what has really helped me. I don't eat bread or pasta or rice or potatoes or cakes or biscuits or sweets (other than jelly babies for hypos).
My breakfast is usually creamy Greek natural yoghurt (not low fat as I need the fat in the yoghurt to stabilize my BG and energy levels) with a few berries (currently stewed rhubarb from the garden though) and mixed seeds and sometimes chopped nuts and cinnamon and/or ginger....plus my coffee with cream.
Lunch is usually a half an apple with a chunk of really nice cheese (currently smoked cheddar) or a bowl of soup or a salad with boiled eggs or meat or sometimes tuna and mayonnaise wraps made with lettuce instead of bread or veggie sticks with sour cream and chive dip (the real stuff from the chilled counter not the Doritos stuff in a jar.... processed foods are part of the disordered eating problem i think, so I try to stick to real foods as much as possible)
Evening meal might be a veggie curry or stir fry or chilli either with Konjec rice or noodles or just on a bed of more veg. Or I love ratatouille which I batch cook and have that with meat or grilled cheese or traditional meals like high meat content sausages with mash but use mashed cauli instead of potato with a good dollop of cream cheese mixed in and plenty of other veg, mostly green leafy veg which is usually cooked with a knob of butter. Gammon with cauliflower cheese and broccoli, but the cauli cheese is just made with cream cheese and grated cheese instead of a cheese sauce with milk and flour....
Anyway, that is just an idea of what I do and how I go about managing my disordered eating. Some days I just need one or 2 meals a day and if I can get out for a good walk that definitely helps with wanting less food as does keeping busy.
I am not sure if any of that is helpful to you but it really has changed things for me in lots of positive ways. It wasn't easy getting started as bread and potatoes were a cultural staple of my meals and bread in particular is a carrier for so many other foods that it posed considerable difficulty at first as it is just so convenient, but gradually I got used to not having it and now I really don't miss it and the odd occasion where I have some at social events I am left wondering what I thought was so great about it. Admittedly mostly these are not occasions where the bread is top quality, but I see this stuff as mostly bland, beige stodge and I like food with lots of flavour now.
I believe there is an organization called BEAT which helps people with eating disorders. I think @Inka may know more about that. I really hope you are able to find a way forward with your eating disorder and find a way to manage your diabetes better. The modern technology we have today with CGM and pumps and stuff can take a lot of the burden out of diabetes, so that might be something to explore with your diabetes team at the clinic if you are not already pumping, but obviously your eating disorder needs addressing and we are here to help you in any way we can here.
Sending (((HUGS)))
So sorry to hear that you have struggled with your diabetes and an eating disorder and you are now suffering complications.
I too have difficulties with my relationship to food and I am very much an all or nothing person. I was a sugar addict and comfort eater pre-diagnosis but I used all the negative feelings I had at diagnosis (guilt and embarrassment etc) to motivate me to change..... I too was initially assumed to be Type 2 and in some respects that helped me because I went all out to try to reverse it by going very low carb. By the time they figured out that I was actually Type 1, I had found that my comfort eating and cravings were greatly reduced by following a low carb way of eating. I also benefitted in other respects in that my 20+yr acute migraine problem stopped when I changed my diet, my joints were much less painful and I lost weight. I started to feel stronger and fitter and healthier than I had in a lot of years and without the cravings I was in much better control of my eating.... and I like control. When I started insulin, I was told to eat normally, but I had no real idea what normal was because I had gone from one extreme to the other ie. very high carb to very low carb and I didn't really trust myself to go back to eating a normal amount of carbs because I knew it was a slippery slope for me. I had a couple of weeks were I increased my carb intake a bit but I felt like it was dangerous ground so I stuck with low carb. That was 4 years ago (I was diagnosed late in life) and I now feel that I can remain low carb for the rest of my life, give or take the odd social occasion where I am left with little choice. I have significantly increased my fat intake as this makes the food I eat satisfying and enjoyable and slows down my digestion so that I don't get peaks and troughs and I find this works pretty well for me. I am not saying that I don't fall off the wagon occasionally but it is only for a day or two at the most before I actually long for a refreshing salad and my control back. I really enjoy my food, maybe more now than I did before because it is almost like I eat in colour now (not just looks wise, but taste wise too). I savour my special treats and I make sure I have a treat every day, sometimes more than one. My main treat of the day is a coffee with real double cream in the morning and I really like to be "in the moment" with that coffee. I know it sounds cliched but I think part of the change in my mentality is eating my food more slowly and seeking out the individual flavours within it and texture is really important too. I really like crunchy foods much more now than I did before.
Anyway, I appreciate that my disordered eating problem was much less severe than yours, but this is what has really helped me. I don't eat bread or pasta or rice or potatoes or cakes or biscuits or sweets (other than jelly babies for hypos).
My breakfast is usually creamy Greek natural yoghurt (not low fat as I need the fat in the yoghurt to stabilize my BG and energy levels) with a few berries (currently stewed rhubarb from the garden though) and mixed seeds and sometimes chopped nuts and cinnamon and/or ginger....plus my coffee with cream.
Lunch is usually a half an apple with a chunk of really nice cheese (currently smoked cheddar) or a bowl of soup or a salad with boiled eggs or meat or sometimes tuna and mayonnaise wraps made with lettuce instead of bread or veggie sticks with sour cream and chive dip (the real stuff from the chilled counter not the Doritos stuff in a jar.... processed foods are part of the disordered eating problem i think, so I try to stick to real foods as much as possible)
Evening meal might be a veggie curry or stir fry or chilli either with Konjec rice or noodles or just on a bed of more veg. Or I love ratatouille which I batch cook and have that with meat or grilled cheese or traditional meals like high meat content sausages with mash but use mashed cauli instead of potato with a good dollop of cream cheese mixed in and plenty of other veg, mostly green leafy veg which is usually cooked with a knob of butter. Gammon with cauliflower cheese and broccoli, but the cauli cheese is just made with cream cheese and grated cheese instead of a cheese sauce with milk and flour....
Anyway, that is just an idea of what I do and how I go about managing my disordered eating. Some days I just need one or 2 meals a day and if I can get out for a good walk that definitely helps with wanting less food as does keeping busy.
I am not sure if any of that is helpful to you but it really has changed things for me in lots of positive ways. It wasn't easy getting started as bread and potatoes were a cultural staple of my meals and bread in particular is a carrier for so many other foods that it posed considerable difficulty at first as it is just so convenient, but gradually I got used to not having it and now I really don't miss it and the odd occasion where I have some at social events I am left wondering what I thought was so great about it. Admittedly mostly these are not occasions where the bread is top quality, but I see this stuff as mostly bland, beige stodge and I like food with lots of flavour now.
I believe there is an organization called BEAT which helps people with eating disorders. I think @Inka may know more about that. I really hope you are able to find a way forward with your eating disorder and find a way to manage your diabetes better. The modern technology we have today with CGM and pumps and stuff can take a lot of the burden out of diabetes, so that might be something to explore with your diabetes team at the clinic if you are not already pumping, but obviously your eating disorder needs addressing and we are here to help you in any way we can here.
Sending (((HUGS)))
rebrascora
Well-Known Member
- Relationship to Diabetes
- Type 1
- Pronouns
- She/Her
TheClockworkDodo
Well-Known Member
- Relationship to Diabetes
- Type 1
Sorry to hear what you've been going through, @MaddyCrow
Just posting to tag @Flower as I know she has gone through this too and might have some helpful advice for you x
Just posting to tag @Flower as I know she has gone through this too and might have some helpful advice for you x
Thank you so much for taking your time to answer me- this site seems to have a kind and supportive community. I will try and get in contact with diabetes uk and BEAT- I really want to feel in control again and stop getting more and more ill!! Thank you so much for getting in touch. X
I am so touched by your response- you really took your time and it is wonderful to hear how well you are doing. I tried low carb some years ago but wasn’t too sure how much to eat and I think I overdid nuts and cheese…. It seems to me like my body reacts to everything- even just eating salad and my levels go up. I will try your advice and am longing to get back control over this. Can you recommend a site where they explain low carb so I don’t overdo my food intake and can follow it correctly? Thank you again for being so kind.
Thank you for your kind reply! It’s great to feel supported!!!
Leadinglights
Well-Known Member
- Relationship to Diabetes
- Type 2
As Type 1 you should be able to eat normally or whatever you want or rather a normal healthy diet if you are using your insulin correctly, dose, timing etc and carb counting to get your dosing right for the food you are eating.
If you have not done it then the DAFNE course would benefit you or the on line BERTIE which you can self refer.
Most of the low carb regimes are aimed at people who are Type 2 where they do need to restrict carb intake whereas you as Type 1 should be looking at getting your insulin and carbs in balance.
Inka
Well-Known Member
- Relationship to Diabetes
- Type 1
Another thing I’d add @MaddyCrow is that high blood sugars can mess with your appetite. In the weeks before I was diagnosed, I remember being absolutely starving (unknown to me, of course, I actually was as my body couldn’t process the food properly). It was an uncontrollable hunger like I’d never felt before. So, taking your insulin will help you control the desire for food. I appreciate you say it’s emotional eating, but it will be easier to deal with that if your body isn’t screaming Hunger! at you too.
You don’t have to eat very low carb. The best thing is to find what suits you. I tend to stick to very similar breakfasts and lunches so I don’t have to think. Eating regularly, with the appropriate insulin, really helps your mental state too. Rollercoaster blood sugars and periods of starvation and binging mess you up more than you’d imagine. Stopping that rollercoaster helps settle your mind and your emotions.
You don’t have to eat very low carb. The best thing is to find what suits you. I tend to stick to very similar breakfasts and lunches so I don’t have to think. Eating regularly, with the appropriate insulin, really helps your mental state too. Rollercoaster blood sugars and periods of starvation and binging mess you up more than you’d imagine. Stopping that rollercoaster helps settle your mind and your emotions.
rebrascora
Well-Known Member
- Relationship to Diabetes
- Type 1
- Pronouns
- She/Her
Eating normally is difficult when you have an eating disorder which is why I related my beneficial experience with following a low carb diet as that helps my disordered eating/comfort eating/cravings. Yes as Type 1s we can eat whatever we want and just match insulin to it, but the big issue is the diabulimia. Thankfully I have always hated high BG levels so I am not diabulimic and in fact I am the other way and rather too keen with the insulin corrections to bring it down which means I hypo rather more often than I should. The mental issues and challenges around managing Type 1 are far more challenging than the practicalities of balancing food and insulin and DAFNE doesn't really address those mental issues.
rebrascora
Well-Known Member
- Relationship to Diabetes
- Type 1
- Pronouns
- She/Her
I am afraid I can't recommend a site. I got most of my knowledge from the good people on this forum but since most of the low carbers are Type 2, I had to find ways to adapt to managing it with insulin. Thankfully, the Libre has helped enormously with that.
I also find that exercise is an important part of the puzzle and for me it is just a brisk walk that means I get my heart rate up and my lungs working harder and maybe a bit of muscle burn up the hills. The rhythmic walking and breathing is helpful mentally and physically. I don't know how much you are able to walk with your neuropathy but walking will help to stimulate blood flow which can help to repair some of the nerve damage. Making sure you have plenty of vitamin B 12 in your body is also important as that is a vital nutrient for nerve health. If you were misdiagnosed as Type 2 for a lot of years I am wondering if you were on Metformin long term as that inhibits the absorption of vitamin B12 and can cause the numbness and even stumbling and falling, so that would be something to get checked out. If you can't walk how about an exercise bike or swimming?
Flower
Well-Known Member
- Relationship to Diabetes
- Type 1
Hi and welcome @MaddyCrow
I'm so sorry you're having such a difficult time with food, type 1, diabulimia, binge eating etc. It is such a tangled web of conflicting thoughts pulling you every which way and is a very challenging, powerful illness that is hard to break out of.
I haven't dealt with binge eating or a gastric bypass but I really struggled for many years with diabulimia and insulin manipulation/omission. This was about 30 years back and I'm not sure there's much more help out there for such a complex issue. Eventually I was seen at an eating disorders clinic but not diabetes specific and saw a psychologist once who did more harm than good. I had to change my behaviour when complications sadly altered my life for ever and literally stopped me in my tracks. I had to rely on my family to inject insulin for me after sight loss and after other terrifying complications and I had to find a safer way to try and live.
Speak to the people who provide your diabetes care and tell them how much you're struggling. They will have heard it all before, the incidence of disordered eating/ insulin manipulation is high more so in women than men. It is an illness and you do need help to find a happier sustainable way to manage things.
This is from the Diabetes UK site on eating disorders and has good information including who to contact
www.diabetes.org.uk
I had to ask and ask and often got told that I was being awkward or didn't I understand that I was insulin dependent. It was hard to keep trying to find any help - this was pre forums/social media. In the end I realised how much damage I had caused at a young age and that I couldn't carry on if I wanted a future. I've managed to turn things around although I live with life changing complications and I am proud of how I manage my T1 now - tech developments have helped a lot as has being on this forum and actually writing stuff down as I struggled for years to say it out loud.
I'd try and unravel some of the things you're dealing with- start a meal plan with meals that you wnat to eat with carb content and insulin doses
Get some snacks that won't affect your blood sugar too much. I love sugar free gum of every flavour and it keeps me busy chewing so I don't want anything else. Different low sugar drinks and squashes are good for something that tasted sweet but isn't going to cause bg mayhem.
There is light at the end of the tunnel but it can be a long haul out to a healthier way. Please speak to your DSN and use the links in the posts above or in the Diabetes UK link.
Let us know how things are going for you, it's worth every bit of effort to get to a better situation. Wishing you well.
I'm so sorry you're having such a difficult time with food, type 1, diabulimia, binge eating etc. It is such a tangled web of conflicting thoughts pulling you every which way and is a very challenging, powerful illness that is hard to break out of.
I haven't dealt with binge eating or a gastric bypass but I really struggled for many years with diabulimia and insulin manipulation/omission. This was about 30 years back and I'm not sure there's much more help out there for such a complex issue. Eventually I was seen at an eating disorders clinic but not diabetes specific and saw a psychologist once who did more harm than good. I had to change my behaviour when complications sadly altered my life for ever and literally stopped me in my tracks. I had to rely on my family to inject insulin for me after sight loss and after other terrifying complications and I had to find a safer way to try and live.
Speak to the people who provide your diabetes care and tell them how much you're struggling. They will have heard it all before, the incidence of disordered eating/ insulin manipulation is high more so in women than men. It is an illness and you do need help to find a happier sustainable way to manage things.
This is from the Diabetes UK site on eating disorders and has good information including who to contact
Eating disorders and diabetes
Some people living with diabetes can develop an unhealthy relationship or fixation on food. This can lead to something called disordered eating behaviour or possibly an eating disorder. Diabetes and food are closely linked. Living with diabetes can mean a bigger focus on diet, weight and body...
I had to ask and ask and often got told that I was being awkward or didn't I understand that I was insulin dependent. It was hard to keep trying to find any help - this was pre forums/social media. In the end I realised how much damage I had caused at a young age and that I couldn't carry on if I wanted a future. I've managed to turn things around although I live with life changing complications and I am proud of how I manage my T1 now - tech developments have helped a lot as has being on this forum and actually writing stuff down as I struggled for years to say it out loud.
I'd try and unravel some of the things you're dealing with- start a meal plan with meals that you wnat to eat with carb content and insulin doses
Get some snacks that won't affect your blood sugar too much. I love sugar free gum of every flavour and it keeps me busy chewing so I don't want anything else. Different low sugar drinks and squashes are good for something that tasted sweet but isn't going to cause bg mayhem.
There is light at the end of the tunnel but it can be a long haul out to a healthier way. Please speak to your DSN and use the links in the posts above or in the Diabetes UK link.
Let us know how things are going for you, it's worth every bit of effort to get to a better situation. Wishing you well.
Thank you for your kind support. X
That really makes sense! I just struggle to not be obsessed with god….. I really don’t understand that I hate my self so much for not looking after my body but making myself more and more I’ll….
Thank you Barbara, that is exactly my dilemma!! My mental health is my problem- I always suffered with a bad relationship with god! When I then had diabetes and realised that I could eat and eat and just not take my insulin and then NOT put the weight on but actually lose it- WAS MY DOWNFALL!!!! I am more I’ll than ever but people give me compliments about my weight saying how great my weight loss is….. Arrrgghh!!
Thank you for your advice! I will start a food and mood diary and I will call the helpline tonight…. XHi and welcome @MaddyCrow
I'm so sorry you're having such a difficult time with food, type 1, diabulimia, binge eating etc. It is such a tangled web of conflicting thoughts pulling you every which way and is a very challenging, powerful illness that is hard to break out of.
I haven't dealt with binge eating or a gastric bypass but I really struggled for many years with diabulimia and insulin manipulation/omission. This was about 30 years back and I'm not sure there's much more help out there for such a complex issue. Eventually I was seen at an eating disorders clinic but not diabetes specific and saw a psychologist once who did more harm than good. I had to change my behaviour when complications sadly altered my life for ever and literally stopped me in my tracks. I had to rely on my family to inject insulin for me after sight loss and after other terrifying complications and I had to find a safer way to try and live.
Speak to the people who provide your diabetes care and tell them how much you're struggling. They will have heard it all before, the incidence of disordered eating/ insulin manipulation is high more so in women than men. It is an illness and you do need help to find a happier sustainable way to manage things.
This is from the Diabetes UK site on eating disorders and has good information including who to contact
Eating disorders and diabetes
Some people living with diabetes can develop an unhealthy relationship or fixation on food. This can lead to something called disordered eating behaviour or possibly an eating disorder. Diabetes and food are closely linked. Living with diabetes can mean a bigger focus on diet, weight and body...
I had to ask and ask and often got told that I was being awkward or didn't I understand that I was insulin dependent. It was hard to keep trying to find any help - this was pre forums/social media. In the end I realised how much damage I had caused at a young age and that I couldn't carry on if I wanted a future. I've managed to turn things around although I live with life changing complications and I am proud of how I manage my T1 now - tech developments have helped a lot as has being on this forum and actually writing stuff down as I struggled for years to say it out loud.
I'd try and unravel some of the things you're dealing with- start a meal plan with meals that you wnat to eat with carb content and insulin doses
Get some snacks that won't affect your blood sugar too much. I love sugar free gum of every flavour and it keeps me busy chewing so I don't want anything else. Different low sugar drinks and squashes are good for something that tasted sweet but isn't going to cause bg mayhem.
There is light at the end of the tunnel but it can be a long haul out to a healthier way. Please speak to your DSN and use the links in the posts above or in the Diabetes UK link.
Let us know how things are going for you, it's worth every bit of effort to get to a better situation. Wishing you well.
I am still on metformin because of my heart but was really not aware that it stops the absorption of B12- not sure what to do about that……
I feel blessed that I have found this kind Forum- I normally tend to put my head in the sand and now I am here and it makes me feel supported and also thinking about what you all said- maybe this is the first step to healing…
I will call the helpline tonight and see what they have to say. I hope you all have a great day. Xx
I will call the helpline tonight and see what they have to say. I hope you all have a great day. Xx
rebrascora
Well-Known Member
- Relationship to Diabetes
- Type 1
- Pronouns
- She/Her
Ask GP to check it via a blood test if they haven't done so recently. It could certainly be affecting your feet and it needs injections to rectify because oral supplements are also impacted/blocked by the Metformin. Providing as much support for your nerves as possible will be important particularly when you are experiencing numbness, so do get this checked out.
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