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

I think you need to formally complain about this; it is absolutely disgraceful behaviour. Your treatment is at the advice of your doctors not at their insistence; they can't force you to do anything and if they think they can they need to be on the wrong end of a court order.

Please make as big a fuss as you can possibly manage; certainly a formal complaint, but also get in touch with your GP, get citizens advice help and don't let them get away with this.

This makes me furious to hear!

michita said:

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.

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Michita this is one of the most horrifying stories I've ever heard. Many years ago I had to fight to take my own insulin into hospital and inject myself as usual; I thought that was a battle, but compared with this it was a breeze. I agree with Dillinger that it would be good if you complained (even though it's a while ago) as I'm all for trying to help others avoid going through bad experiences if possible. The trouble is it takes time and energy to keep pushing against health professionals who are not prepared to consider another way of seeing or doing things - even though we can produce evidence that what we're doing is working. In the past few years I've had the best DSN ever and she's revolutionised my approach and supported me in trying different approaches; if only they were all that good. I hope you have a health team you're happy with now and who are supportive of what you decide to do. Well done for finding someone else to treat you, and for just getting through a dreadful experience.

Hi @michita

Firstly, I agree with @Dillinger - the way you've been treated has been appalling - whether or not hospitalising you was the right thing to do, this should have been handled very differently; I also agree with all of @asortafairytale's comments.

It's a tricky situation, because it is true that there are a whole host of reasons why people may choose to avoid or limit carbohydrate; and it's probably the case that doctors see more cases ( in type 1 diabetes) in which a low carb lifestyle is the result of some underlying psychological condition, than cases in which it's just an educated and informed choice.

The additional difficulty is that, where psychological conditions are concerned, quite often the patient truly believes they're acting logically, rather than out of fear or anxiety; this means that doctors have to be careful about rooting out the truth of the matter in each case, on an individual basis; but I also suspect it means that the truth is overlooked in quite a few cases where people choose freely to be low carb (as I suppose it's safer to assume the patient has a problem).

I suffered a high degree of hypo-anxiety (which is still with me to some degree), following a bad hypo last year - I posted about it here:

https://www.diabetes.co.uk/forum/threads/new-to-this-my-first-post.121586/

I now choose a low carb diet - a low carb diet is a perfectly valid lifestyle choice, and doesn't automatically mean you have an eating disorder; and it can be an excellent way, if used properly, for an insulin dependent diabetic to manage sugar levels within a tighter range, and to limit the risk of hypos; not wanting to have a high dose of insulin in your system is also quite a valid reason to limit carb intake.

You might find these links of interest, in relation to the difference between low and high carb diets:

https://diatribe.org/low-carb-vs-high-carb-my-surprising-24-day-diabetes-diet-battle
https://diatribe.org/low-carb-vs-high-carb-ii-my-diabetes-diet-battle-continued

As @asortafairytale says, perhaps don't go too low though - I posted about my own experience of going a little too low carb here:

https://www.diabetes.co.uk/forum/threads/low-carb-but-high-sugars-advice-please.123659/

It seems to me possible that your doctors misunderstood your circumstances - it sounds like you've been treated very much as though you were someone who has stopped taking their insulin, and has lost weight as a result; which clearly doesn't apply to you. In fact, it sounds as though your reasons for choosing a low carb diet were well thought through, and based on very valid concerns. Now you're on insulin, it may be worth reflecting on why you're still low carb - this is not an easy time for you, and you're still a very new T1; so I'd encourage lots of discussion with others about it; and this forum is an ideal opportunity for that! Finally, may I wish you health and happiness in whatever you do

michita said:

Many years before diagnosis. I mentioned it to GP but they didn't take much notice and seemed to think it's quite common.... my symptoms were quite bad then. Low carbing cured it. I was on high carb diet.

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I had this prior to diagnosis. My consultant explained that it was the start of a failing pancreas and that my pancreas was producing insulin too late and then in too great a quantity.

michita said:

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.

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That is absolutely disgraceful. Up to you how you try to manage your diabetes. Inflicting this nonsense on you amounts to abuse.

@michita also just for everyone else's reference. A diabetes specialist CAN NOT diagnose you with an clinically defined eating disorder without specialist input, they can recommend that you see a psychologist/ psychiatrist who CAN diagnose you but in the same way a clinical psyc would be completely out of their depth talking about lipid profiles or protein in the urine so goes for diabetes specialists and mental health conditions.

If you are based in the UK and would like to complain DWED can help you with that. Its a precarious situation, on the one hand we desperately want diabetes specialists to be aware of Eating Disorders we simultaneously are horrified with this sort of behaviour. Definitely we could reach out to your old unit and let them know they've been recmmended for training.

I had a much less stressful but similar situation with a D consultant not too long ago where she completely berrated me for using low carb because I had a history of EDs, I explained to her yes I did and that ed involved me binging on high carb food so who was she to tell me what was safe for my mental health. Also I heard from a friend who was at a conference recently that some of the dsn's there would report parents of CWD to social services if they utilised a Low carb approach to diabetes management.

More awareness all round I think. Sorry this happened to you it sounds horrendous

I agree that this is disgraceful. What I find most appealing is that the food that is served to patients in hospitals it's not exactly haute cuisine or, in some cases, http://www.ansa.it/english/news/201...s-2_c020d383-a064-449c-9f8e-d61f24fd369a.html with te assistance of beetles.
Anyway the bread or the stickbreads and the fruit they serve are pretty awful to eat, not to mention the overcooked pasta.
If refusing to eat ****** food is equal to eating disorder I think there is some bad reasoning here.

michita said:

@jacqfromdwed

Thank you for the comment. Yes that's why reason for my hospitalisation was "suspected" eating disorder.

@asortafairytale says indicator for eating disorder is not weight but whether the person is manipulating insulin or not. Then can people who choose to be on low carb /low insulin to manage good BS level be considered as manipulating insulin level. I think yes or no... ?

In my mind I'm very sure I don't have an eating disorder. I have diabetes and I'm just trying to manage diabetes the best I can in an easiest possible way for me. I don't care much about my body image (too old...). I like eating and enjoy eating, but I eat no obvious carbs (bead pasta rice potatoes etc). I eat lots of vegetables, fish meat eggs etc. I exercise daily to keep fit. I will make sure to keep my weight within normal.

I think the underlying issue for me is NHS's view that low carb diet is unsafe to type 1s, which I don't agree. I had to agree to eat carbs to get discharged. I don't know what the psychiatrist's recommendation would have been if I had told him I would like to manage my diabetes with low carb diet. My trust was completely gone by then and I was desperate to go home.

I personally think low carb diet is just a diet and should be treated same way as vegetarian diet. No one would force vegetarians to eat meat. My thinking on nutrition is that as long as we take necessary amount of calories it doesn't matter so much which energy source it comes from.

I am based in uk. I'm quite certain they followed their rules. I remember DN saying documenting our conversation and typing up. I just so wish they accept low carb as one of the ways to manage type1s.

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Some hospitals/consultants do listen and believe in lower carbs etc but shamefully less diabetic ones!! I'm froends with a great cardiologist and been to a talk recently with a profssor in Oncology and they really do believe in low carb. One cardioligist actually got his pioppi diet mentioned in parliament with 100 MPs this week so there is hope that perhaps more consultants may adjust their thinking.

I think for me,its because my consultants realise I analyse all my nutrion intake for vitamins and minerals and what food will actually go thru my body without the need for A&E!!