diagnosis of eating disorder because I'm type 1 and follow low carb diet?

[michita]

I've been on low carb diet since my diagnosis in May last year. The diet works well for me and it is my informed choice.

My consultants and DN however were not supportive of my low carb diet. They gave me a diagnosis of suspected eating disorder and I was hospitalised for 4 days. I had to eat hospital's carb/sugar loaded food because otherwise they would not discharge me. I only found out about eating disorder diagnosis at discharge, explained in discharge letter. It was a horrible experience.

Ok, I was slightly underweight then because I lost some weight due to diabetes and I'm also naturally thin type but I didn't and don't have an eating disorder. I wouldn't be on low carb diet if I wasn't diabetic. I loved eating carbs before.

This happened in July last year. I've since changed consultant /DN.

I'm aware that NHS do not recommend low carb diet, especially for type 1s, but do you think doctors can classify T1s following low carb diet as having an eating disorder? That scares me. Or am I safe as long as I keep my weight in normal range.

 

[librarising]

What a horror story ! Sounds as if they put 2 (low carb) and 2 (underweight) together and made 5 !
When you say you were hospitalised, did you agree to this ?
Would you be happy to obtain a 'normal' weight ? That would stop them in their tracks.
I know that if I'm ever hospitalised, food will be 'smuggled in'
Geoff

 

[Juicyj]

Hello @michita Sorry to hear about your hospitalisation, that sounds awful.. I am pretty shocked to be honest that this has happened to you, if you read Dr Bernsteins - Diabetes Solution, he advocates this and is a type 1, it's a shame your consultants and DN were unaware that this is a method some type 1's prefer to follow, it is certainly not an eating disorder in any way shape or form. I think it depends on who you are in contact with, within my trust I spoke to my consultant about going low carb and he was fully supportive. Some type 1's cope very well with managing insulin and carbs however some don't, however it is our choice what works best for us and how best to manage our blood glucose levels.

 

[donnellysdogs]

You need to keep in normal weight targets.

Hospitalisation-was this in a mental unit? Eating disorder unit? Normal ward?

I've followed low carb for 30+ years and actually moaned constantly because docs do not luisten to how people gain good weight and good levels.

Depends exactly on details on where you were hospitalised..

Weight loss is normal before diagnosis but general average population would gain some weight after diagnosis.

We are all different though. I was actually discharged from hospital care after 1 year for being so good 30+ years ago.... I waa very thin before diagnosis but gained after despite not hugely changing eating too much. It was cos my bloods were level and stanilused my weight.

If theve analysed your diet and found it lacking in nutrition they would have cause for concern. Low carb and eating healthy yogurts, berrys, veg, eggs, cheese etc should not cause concern.

I have ate only 2 teaspoons of fish and mushy veg on a tea plate for a long while due to other health issues but my hospital teams know I analyse the foods I can eat and do utmost to ensure I gain all my minerals and vitamins no matter what...

 

[CathP]

Oh wow, I'm so sorry you got treated like this, shocking and scary. We follow a low carb life-style with my t1 daughter, and although our team aren't supportive I truly don't think they believe we all have eating disorders, though they've accused us of many things.

 

[azure]

How scary for you @michita ! What reason did they give you when they said you had to go into hospital? Could you not discharge yourself?

Has your new consultant made any comments at all?

 

[donnellysdogs]

@michita please come back and talk to us. There are a number of us T1's that do low carb or lower carb and you've been thru horrible tough time. We'd like to help...

 

[Pinkorchid]

Ok, I was slightly underweight then because I lost some weight due to diabetes and I'm also naturally thin type but I didn't and don't have an eating disorder

That's quite worrying that doctors can do that to someone. Like you I am naturally slim but have lost weight since diabetes and my doctor says I am a bit underweight I eat a moderate low carb diet and have a good appetite I just can't put on any weight. That is really bad that they admitted you to hospital with an eating disorder that you knew you did not have.

 

[TheBigNewt]

What was the reason they gave for admitting you to the hospital in the first place? Because in your original post you said they didn't mention an eating disorder to you at all while you were there for 4 days, rather they mentioned it in a letter they sent to you after you got home.


Edited by moderator to remove disrespectful comment.

 

[ickihun]

In my experience the dietician only advocate low carb for weight loss. Not for underweight patients. Especially not newly diagnosed type1s.
Health team are only happy if we are in weight range hun. I would get treated the same on high fat diet at my starting weight of 22stones.
We seem to be total opposites but treated the same way, eh?
I was referred to psychologist on lchf.

 

[ickihun]

@michita are you at health weight range now?

 

[michita]

Thank you all for your response

a bit more detail .... My DN did not want to prescribe insulin to me despite my T1 diagnosis because according to her my BS wasn't high enough (due to honeymooning and low carb diet). I was on metformin and gliclazide, which weren't really helping ( BS still goes up to 20mmol if I eat carb). I felt stressed about eating without insulin to manage BS, made an appointment to see DN to ask for meal time insulin. She didn't want to give it to me because I'm low carbing, I insisted, she called 2 consultants over to discuss my case.

One of them told me I need to eat carbs, asked me if I drive and he could even cancel my license. At the end, they discussed without me. DN came back and said ok, they will prescribe insulin but I have to stay overnight to be monitored. I asked is it really overnight, she said maybe depends.

My diabetes care team was part of big general hospital with A&E and everything.

DN took me to a ward (it was a renal ward, only place with available bed). My BS running over 20 mmol from eating hospital food. I didn't leave the place because I wanted insulin prescription. I live on my own, didn't have any change with me. When I asked nurse if I could go to a shop downstairs to get toothbrush and things, they said I needed to be accompanied by a nurse.
I saw a psychiatrist who asked me if I hear or see things...

At discharge, the ward doctor explained to me I was hospitalised for eating disorder. She said she didn't want me to go home and read the discharge letter and be shocked. She was of same ethnicity with me and same size and said she gets mistaken for having eating disorder. She was junior doctor and must have felt sorry seeing miserable me desperate to go home.

I got insulin, prescribed by the ward doctor, not by my DN or my consultant.

It was a very surreal experience. Very stressful, i still don't know how to process. I probably could have communicated with DN in a better way.

Apologies for a long post. I just don't know how to summarise this. Thank u for reading.

 

[donnellysdogs]

Omg!!

My utter heart goes out to you and what you have gone through is totally appalling.

Are you taking insulin for food now?

 

[donnellysdogs]

Do you have an appt to go back to that consultant/DN?

Could you ask your GP for a referral to a different hospital?

 

[Pipp]

@michita
In a situation such as this it might help to get assistance from the hospital patient advocate liaison service. (PALS) all NHS hospitals should have this, and info will be on hospital website.

 

[michita]

And Geoff @librarising, @Donnellysdog, @ickihun

Thank you for your comments. This happened a year ago and I made gaining weight a priority after this. All my adult life my weight has been borderline underweight/normal (163cm around 50kg), never had any issues with eating. For 1 year leading up to my diabetes diagnosis I noticed my weight was low at around 45kg. I'm now back at 52kg and within normal range.

I never had any weight issue and I would make sure to keep my weight normal to avoid this happening again.

@Juicyj

I envy you for having a consultant who is supportive of low carb diet, thank you for your comment

@CathP

Thank you. It must be so challenging for you and your daughter. I really hope your daughter gets best support she deserves. Why do they make us feel like we are doing something wrong when we are only trying what we think is the best for us.

@azure

Thank u for response. It was scary and made me think about things. If you are diagnosed with mental illness including eating disorder, they can classify you as mentally incapacitated to make a decision for yourself and you lose your right as a patient to refuse treatment. That's scary.

I'm seeing new consultant this week. I don't think I will advertise my low carb diet, to protect myself.... I learned my lesson.....

 

[michita]

@TheBigNewt and @Pinkorchid
Thank you for response !

@Pipp thank you for response. I was quite upset afterwards and thought about complaining but I thought maybe I was overreacting and they are only following their rule book and they didn't have a choice. I don't know. It felt like they are pushing me off the cliff.... but I didn't fall off .... I just don't want use my energy on them.

 

[michita]

Hi @donnellysdogs

I'm now under care of a different consultant. Much smaller place with no inpatient service. There was no way I was going back after the experience. Im still afraid a bit over doctors reaction, for example if my urine shows high ketones due to low carbing.

 

[donnellysdogs]

Good for you @michita.

I know from myself it takes courage to change consultants, change hosputals and most of all gain courage to trust other consultants and staff.

I've complained about treatment at one hospital and went thru hell during that time. 2015 to 2016. Changed to another hospital that was local as I had moved. Still had to battle. Finally, I wrote to my Professor at 3rd tertiary hospital (never seen him, just googled him xmas day). I got response and finally Apr 26th got my op this year. Thank goodness, as my supposed healthy breast wasnt healthy!! Not diabetes related but I've fought through things, for my health-not against NHS staff. Just that I know my body. They do not live in my shoes. I did have a lot of therapy too to get me through the challenging times. I lost trust in NHS. I gained it back through two Professors at new hospital. Both superb. Still struggling with other NHS staff and trust but feel more balanced in myself.

I feel that you've had a journey and a half. I too have been very lean at times. At 5'6" and no fat I know I can not go under 60kg. I'm muscular more than fat.

We face challenges being lean and low carbers. I dont worry about carbs, never have really. Just tried to avoid bread, cereal, etc as I knew it wasnt good for me. I also have probs digesting food so eat very little but do watch my vitamin and mineral nutrition. I have cancer to add in to my battles..and try to do best nutritionally for that too and eat foods that I know are 'meant" to be good ie broccoli, turmeric etc every day.

Its tough being lean as well as being overweight as our eating can also be challenged. I have everything worked out and nowadays my gastroenterologist, breast cancer Professor call me role models. My diabetes people find me a challenge though!!

I'm glad you found a different consultant. That you are maintaining weight. Just make sure you keep nutrionally balanced too.

Your update on your current situation is a relief.

I am grateful that I havent had to fight your challenges. In all honestly, I hope nobody else has the same experiences tbh.
Its same with my challenge to get my 2nd op, but I do know many, many women face the same challenges I had to get their 2nd ops...

 

[asortafairytale]

Wow, yeah this is all kinds of wrong. I am so sorry it happened to you. It sounds to me like you actually were trying to avoid becoming unwell by low carbing as they wouldn't give you insulin!

I would have been concerned if say you had been avoiding carbs because you didn't want to take insulin or purposely doing it to keep your weight down but that doesn't seem the case at all here.

To be honest, many clinicians are becoming alarmist and worried about covering themselves since release of the newly amended NICE guidelines which mention eating disorders needing to be urgently treated. This may have been the case.

Can I ask, now that you have insulin will you be introducing more carbs to your diet? Is it just your preference? If you keep your carbs too low you can go into starvation ketosis which although is not diabetic ketosis/acidosis, will lead to weight loss so do be careful.

Also just a note to some that have posted. Weight is certainly not the primary indicator of whether someone has an eating disorder or not, especially in people who have what is termed 'diabulimia' (insulin omission) who are most often normal weight. The most important factor to consider would actually be whether they are manipulating their insulin or not.

I am so glad you have a new consultant now @michita and hope that it will be a good fit at the new clinic. It's hard to build up trust with health professionals when they go behind your backs like that, I know.