Diabetes and eating disorders?

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UphillButSmiling

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Type 2
Not sure where to turn! I have T2 diabetes and possibly some sort of eating disorder that unduly limits what I feel able to eat.

It’s frustrating that the advice I get from the medical people and the advice I get from the eating disorder experts is often contradictory. Would love to find a clinic that specializes in the interaction of the two, but despite asking for recommendations from GP and local consultant, and Googling endlessly, I can’t find anyone, either for referral or private care.

Diabetes UK recommended I ask on here.

Could really use some support if you have any idea. I live in South Yorkshire, but glad to work remotely or travel. There has to be an answer!
 
You are not alone with this, I've noticed more than a few posts from diabetics with a variety of eating disorders. Apart from discovering I am allergic to lettuce (seriously), I actually don't have this problem, but I can definitely sympathise. Why don't you tell us a bit more about what you feel you can and cannot eat and why?

I should emphasise here that I am not being patronising by asking 'why'. The other posters I mentioned have widely different reasons for their preferred diets.

You are definitely in the right place by the way
Irvine
 
Sorry to hear you are having to wrestle the joint challenges of diabetes and disordered eating.

Both plenty tricky enough on their own, but very tricky together, especially when the advice to help with both contradict each other :(

Are you taking medication to help with your diabetes?

There are psychologists who specialise in disordered eating and diabetes, but it seems to be more in the context of Type 1 and the very difficult and dangerous condition of diabulimia

The charity DWED used to offer advice and support, but unfortunately they are no longer running as a charity.

Diabetics With Eating Disorders (DWED)

Complex Care Plan. DWED - Diabetics With Eating Disorders is a charity providing support, advocacy and training for people affected/looking after people affected by diabetes and eating disorders.
www.t1resources.uk www.t1resources.uk
 
Irvine - thanks so much for your concern. Appreciate the question, glad to answer. I'm afraid the answer is long! Hope you don't regret asking!

First a little background. I'm a man in his 60s. Been a T2 for about 12 years, on Metformin and Gliclazide, no insulin. I am very good about meds and exercise (just walking at a reasonable pace, but at least doing that for 2-3 hours a day, and I have never missed a day for years, except when very ill). I am 5'7" and recently was 15st 6pounds (98kg). I have recently lost about half a stone as my eating again came under reasonable control. My A1C varies according to diet. In a good spell, it can be as low as 42 (just last year). When my eating is disordered, it can be as high as 74 (this year). I live with my spouse who is very supportive and a good cook who chooses recipes in sympathy with my tastes and health needs.

When my eating feels under control: I am never a "perfect" eater, but during spells when my blood sugar is in order I eat a low carb diet, varied, about 120carbs per day. There will be varied foods, some vegetables and fruit, a fair amount of protein from meat and other sources. In the past my go-to approach was to count carbs, but recently I have just stopped eating between meals, and am limiting high-carb foods. Both the carb counting and the not-eating-between meals work very well for my blood sugars, with good time in target and low A1C.

Then after a period of 6-18 months of reasonable eating... suddenly my favourite high-protein or high-fiber foods will make me feel nauseated and sometime cause me to vomit. I do not make myself sick, but I will vomit anyway, at least once a week, and go through periods of intense nausea almost every day at mealtime. One morning the egg dishes I like will smell terrible to me and I cannot eat them. Favourite meat dishes like steak or meat loaf will disgust me. The least bit of stringy texture in a piece of chicken will cause me to retch. Deprived of these options, I'll starting eating more carby foods. Then as my blood sugar goes higher, I'll crave more and more carby foods. I do not understand why this switch happens -- my GP and various consultants haven't found an organic cause, which makes me feel like it must be psychological. But it feels like a sudden allergy, or the sort of food preference that pregnant woman talk about. And suddenly I'm eating higher and higher amounts of carbs every day and my blood sugars will soar to 15-20, and sometimes after 20, with time in target under 10%.

Then after 4-12 months of that phase of high-carb eating and high blood sugars... Something switches in my body or mind again, and it signals I can eat protein and high-fiber foods again. It takes me a little while to wean myself off of the high-carb foods and for my blood sugars to return to normal, but soon it does, the weight comes off. I do not play with my meds. I am not bulemic or anorexic. I'm eating large portions of food, varied, and not ridiculously carby. But nutritionists have wondered if I have arfid, selective eating disorder, or binge eating disorder. I do not meet the technical diagnostic criteria for those disorders, but neither do I meet the criteria for any other medical disorders.

Right now... I am eating pretty well -- foods I enjoy, healthy foods, etc. I have to eat carbs with protein or I get nauseated, but that's not a problem. I suppose I'm still having a lot of problems with avoidance and can't eat a lot of things that I used to be able to, even last year. But I can have at least a few bites without being sick, and the trend is in the right direction. The weight, although still in the obese range, is coming off at a slow but steady pace. My blood sugar is really good, with time in target between 70% and 90% most of the time. And I'm happy. (To be fair, I'm happy even when my eating isn't well balanced -- just not happy about my health at those times. I'm a pretty happy person generally.) But I feel like the clock is ticking and a day will come again when I won't be able to eat well without feeling sick. I want to start looking for ideas before that happens so I know what to try next.

A reminder of what I'm looking for. I appreciate any advice or shared experiences -- it's very nice to feel like I'm not alone, and I've learned tons already from other diabetics. But I don't expect a "cure" on an internet forum. What I'd really like is the name of a clinic that can give me integrated advice from BOTH a medical and psychological point of view so when I have the next spell of not being able to tolerate protein and fiber, I will have a strategy in hand.

If it helps, here's what I've tried so far. On the medical side, my GP and diabetes nurse have referred me to a diabetes specialist in my city, have tried me on different meds, and have referred me to a ENT specialist who couldn't help, and to a gut specialist who has deprioritized me. They don't have any further ideas. On the "coaching" side, a dietitician who specializes in diabetes has tried to help me find foods that work around my limitations during the "bad" spells but felt she took me as far as she could; a diabetes coach was proud of what I could do in the "good" period, but sent me back to the GP for the nausea problems. On the psychological side, CBT has not helped (yet). Nor has general supportive therapy. Nor meditatation. A specialist in sensory integration thinks I might have issues, but isn't comfortable with recommending things to me regarding diabetes. And a local specialist in eating disorders doesn't think I meet enough diagnostic criteria to bother with. Everyone thinks it's interesting. I'm glad to be interesting, but I'd also just like to find a solution.

Thank you for reading this far! Sorry to write so much. Clearly I have a lot to get off my chest 🙂 If you have any ideas or suggestions for where to go next, I'd be grateful. It can't be good to have my blood sugars go so high, even if I always get them under control again eventually.
 
A couple of things come to mind. Many people say metformin gives them an unpleasant taste and food tastes horrible. Could it be that a certain make of your metformin affects you in that way but a different one doesn't.
Sometimes the effect of a virus can affect your sense of taste and smell, I had a period of time following a really bad virus when things tasted vile except something sweet. I saw an ENT specialist and they said it could sometimes happen and it may or may not return to normal, luckily it did.
When these episodes happen then looking at your portion size but still having the things you are able to eat even if it restricts the variety a bit.
Thank you for the comprehensive explanation.
 
UphillButSmiling said:
.... What I'd really like is the name of a clinic that can give me integrated advice from BOTH a medical and psychological point of view so when I have the next spell of not being able to tolerate protein and fiber, I will have a strategy in hand.
Click to expand...
Unfortunately, I personally cannot help you with that, but there is genuine wealth of experience and knowledge on these boards, so I am sure someone will be along who has heard of a clinic or Doctor with said speciality.

I myself was one of the first people in the country to get a provisional diagnosis of Asperger's way back in 71/72. At that time there was nobody in the country qualified to give either a full diagnosis or offer any kind of therapy. As a result, I was left to develop my own strategies for coping. So, I do understand how you feel.

In general, as @Leadinglights says, there can be viral or bacterial causes. Also, it could be some kind of bulimia. Remember, terms like this are not rigid frameworks, but rather diagnostic tools whose precise definition changes with each new publication of the relevant medical journal. So, for example, nowadays's, rather than being diagnosed as Asperger's, I would be diagnosed with Autistic Spectrum Disorder.

It could even be a genetic quirk. It is very likely that, on occasion, some of our distant ancestors gained an evolutionary advantage from your current problems, and what you are experiencing is just hangover from that time.

The important thing is that, failing finding a specialist with all the right answers, you need to develop techniques for dealing with it. This could be some kind of therapy or even a change of lifestyle with new hobbies, interests and activities. What I am suggesting, is a case of whatever works!

By the way, don't worry about writing too much, I am quite happy to talk things through with you.
 
@UphillButSmiling some of what you have mentioned sounds very much like how my youngest is with food (though without the diabetic restrictions) - they will like a food and eat it often/regularly then suddenly go off it and refuse to eat it for a prolonged period. They are autistic and I feel like they probably have ARFID but I haven't yet pursued the latter diagnosis. You mentioned that a sensory integration specialist has seen you, have you ever looked into whether you could be autistic?
 
UphillButSmiling said:
Not sure where to turn! I have T2 diabetes and possibly some sort of eating disorder that unduly limits what I feel able to eat.........
Could really use some support if you have any idea. I live in South Yorkshire, but glad to work remotely or travel. There has to be an answer!
Click to expand...
Not sure if they could help but wonder if you have tried contacting https://www.syeda.org.uk/ South Yorkshire Eating Disorders Association they are based in Sheffield or the national organisation https://www.beateatingdisorders.org.uk
If they can't help you, maybe they can signpost you towards someone who can. 🙂
 
I’m also here to ask, have you read about autism and do any of the signs feel true for you? This sounds like a sensory issue, do you get any other sensory issues or stresses during these difficult times? Any patterns in what’s going on in your life when it starts? (I’m autistic and have intermittent eating issues with only being able to tolerate certain foods that sounds similar to you)
 
UphillButSmiling said:
... What I'd really like is the name of a clinic that can give me integrated advice from BOTH a medical and psychological point of view ... Everyone thinks it's interesting. I'm glad to be interesting, but I'd also just like to find a solution. ... any ideas or suggestions for where to go next ...
Click to expand...
For what it's worth, I just did a little googling, and there seems to be a Clinic for Eating Disorders and Diabetes called the Aspen Centre, in Warwick, which is part of the NHS and deals with both Type 1 and Type 2 patients. It seems to be run by a Dr Tony Winston, and one of his published articles (https://pubmed.ncbi.nlm.nih.gov/32537669/ ) gives his e-mail address.

Every specialist loves an interesting case in their field! And in a presentation of his online, he notes that not nearly enough attention is paid to eating disorders and Type 2. Try e-mailing him; maybe he could suggest someone who could help? I mean, the worst that could happen is he doesn't reply! The best that could happen is he replies telling you exactly the right person to help you.

(It seems he's still working for this NHS trust, so the nhs.net e-mail address should work. If not, it seems he also practises at a private clinic, and this page has a "Contact via Email" button: https://www.schoen-clinic.co.uk/tony-winston ). Best of luck!
 
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I have just been diagnosed with Inattentive ADHD, and one of the things it causes is eating disorders, binge eating and anorexia are common occurences with this type of ADHD and I wonder if that is the cause of my yoyo dieting youth
 
IrvineHimself said:
Unfortunately, I personally cannot help you with that, but there is genuine wealth of experience and knowledge on these boards, so I am sure someone will be along who has heard of a clinic or Doctor with said speciality.

I myself was one of the first people in the country to get a provisional diagnosis of Asperger's way back in 71/72. At that time there was nobody in the country qualified to give either a full diagnosis or offer any kind of therapy. As a result, I was left to develop my own strategies for coping. So, I do understand how you feel.

In general, as @Leadinglights says, there can be viral or bacterial causes. Also, it could be some kind of bulimia. Remember, terms like this are not rigid frameworks, but rather diagnostic tools whose precise definition changes with each new publication of the relevant medical journal. So, for example, nowadays's, rather than being diagnosed as Asperger's, I would be diagnosed with Autistic Spectrum Disorder.

It could even be a genetic quirk. It is very likely that, on occasion, some of our distant ancestors gained an evolutionary advantage from your current problems, and what you are experiencing is just hangover from that time.

The important thing is that, failing finding a specialist with all the right answers, you need to develop techniques for dealing with it. This could be some kind of therapy or even a change of lifestyle with new hobbies, interests and activities. What I am suggesting, is a case of whatever works!

By the way, don't worry about writing too much, I am quite happy to talk things through with you.
Click to expand...
IrvineHimself, I am grateful. Your analogy about your Aspergers diagnosis in 71/72 is really helpful. As is your kindness and matter-of-fact explanation. It does feel like I don't fit into well-understood categories. And that is frustrating for the medical/caring teams, and sometimes for me. And sometimes it's OK to feel a bit different too.
 
Lucyr said:
I’m also here to ask, have you read about autism and do any of the signs feel true for you? This sounds like a sensory issue, do you get any other sensory issues or stresses during these difficult times? Any patterns in what’s going on in your life when it starts? (I’m autistic and have intermittent eating issues with only being able to tolerate certain foods that sounds similar to you)
Click to expand...
@Lucyr What a thoughtful way to encourage me to explore this issue. I have read about autism before and your response prompted me to read it again. I don't think I'm autistic and the criteria for example on the NHS site on adult autism don't apply to me at all. But I'm intrigued by the similarities in what you've experienced and what I am. I definitely have a lot of sensory sensitivities that are in common with what many people with autism have.

You asked about patterns that coincide with my periods of intermittent eating issues. There are two: often (but not always) a change in medication; or the onset of a serious illness will predict the problem arising.

Have you developed any coping strategies yourself for when you have the intermittent eating issues?
 
Spathiphyllum said:
For what it's worth, I just did a little googling, and there seems to be a Clinic for Eating Disorders and Diabetes called the Aspen Centre, in Warwick, which is part of the NHS and deals with both Type 1 and Type 2 patients. It seems to be run by a Dr Tony Winston, and one of his published articles (https://pubmed.ncbi.nlm.nih.gov/32537669/ ) gives his e-mail address.

Every specialist loves an interesting case in their field! And in a presentation of his online, he notes that not nearly enough attention is paid to eating disorders and Type 2. Try e-mailing him; maybe he could suggest someone who could help? I mean, the worst that could happen is he doesn't reply! The best that could happen is he replies telling you exactly the right person to help you.

(It seems he's still working for this NHS trust, so the nhs.net e-mail address should work. If not, it seems he also practises at a private clinic, and this page has a "Contact via Email" button: https://www.schoen-clinic.co.uk/tony-winston ). Best of luck!
Click to expand...
@Spathiphyllum What an amazing find. It makes me question my Googling skills that I haven't run across this before. It's on my reading list for this week. Thank you for taking the time to Google, summarize, and suggest.
 
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Jenny65 said:
I have just been diagnosed with Inattentive ADHD, and one of the things it causes is eating disorders, binge eating and anorexia are common occurences with this type of ADHD and I wonder if that is the cause of my yoyo dieting youth
Click to expand...

@Jenny65 Thank you! You sent me to Mr Google, where I came across some good explanations. Doesn't seem to apply to me in the end, but it was really useful to have one more possibility to consider. Good luck on your journey!
 
UphillButSmiling said:
@Lucyr What a thoughtful way to encourage me to explore this issue. I have read about autism before and your response prompted me to read it again. I don't think I'm autistic and the criteria for example on the NHS site on adult autism don't apply to me at all. But I'm intrigued by the similarities in what you've experienced and what I am. I definitely have a lot of sensory sensitivities that are in common with what many people with autism have.

You asked about patterns that coincide with my periods of intermittent eating issues. There are two: often (but not always) a change in medication; or the onset of a serious illness will predict the problem arising.
Click to expand...
It is entirely possible to be diagnosed with Sensory Processing Disorder without having the social communication difficulties needed for an autism diagnosis now, so even if you think you aren't autistic it may be worth exploring sensory processing strategies more commonly used by autistic people e.g. a Sensory Diet to see if that helps. (Sensory Diet isn't about food but about regularly using activities that support Sensory processing, either by meeting additional Sensory needs e.g. need for pressure to calm, or activities to try to gradually desensitise yourself to textures that you struggle with - so for example, from an eating point of view that might mean making a small portion of a food that you usually like but are struggling with the texture of, and giving yourself permission to chew it and then spit it out. Or even just starting with touching it with your finger if you're particularly struggling with it)
 
UphillButSmiling said:
Not sure where to turn! I have T2 diabetes and possibly some sort of eating disorder that unduly limits what I feel able to eat.

It’s frustrating that the advice I get from the medical people and the advice I get from the eating disorder experts is often contradictory. Would love to find a clinic that specializes in the interaction of the two, but despite asking for recommendations from GP and local consultant, and Googling endlessly, I can’t find anyone, either for referral or private care.

Diabetes UK recommended I ask on here.

Could really use some support if you have any idea. I live in South Yorkshire, but glad to work remotely or travel. There has to be an answer!
Click to expand...
Hi I am in same boat and under different specialists for various complications from diabetes and/or eating disorders and none of them want to talk to each other to work up a plan and feel like I am being left to rot. Apparently can’t have Ed treatment due to my physical issues and complications and so on, I am begging for help but getting nowhere x
 
UphillButSmiling said:
@Lucyr What a thoughtful way to encourage me to explore this issue. I have read about autism before and your response prompted me to read it again. I don't think I'm autistic and the criteria for example on the NHS site on adult autism don't apply to me at all. But I'm intrigued by the similarities in what you've experienced and what I am. I definitely have a lot of sensory sensitivities that are in common with what many people with autism have.

You asked about patterns that coincide with my periods of intermittent eating issues. There are two: often (but not always) a change in medication; or the onset of a serious illness will predict the problem arising.

Have you developed any coping strategies yourself for when you have the intermittent eating issues?
Click to expand...
I find that senses are all interlinked, so if I’m only able to eat certain foods (usually plain carby things for me like toast or a sandwich are the things i can always reliably eat) it’s usually a sign that I’m a bit overwhelmed generally. So making more time to destress (headspace app, doing things I find relaxing) and reducing sensory overload in other ways, eg headphones to reduce background noise, food shopping online not in person, aiming for simpler healthy foods like plain chicken, potato and steamed veg not lots of mixed foods / strong flavours like stir fry or curry, usually help me.

To a large extent though, it comes and goes, usually correlating with stress/busy times / sensory overload, and I just have to work round it by thinking about portion sizes of the foods I am able to eat.
 
Hi. Afraid I can't really relate to your situation but just wondered if you have tried the option of the very low calorie meal replacement shakes to perhaps see if you can reverse your Type 2 during a "good period" so that your body can better tolerate the times when you struggle. Or perhaps you would manage a meal replacement type diet when you are going through the difficult patches although I could imagine that the thought of a meal replacement drink might make you gag.... but maybe if it is bland and no particular texture, perhaps not. The Newcastle/Fast 800 diets are well documented.

The other thing that occurred to me when you mentioned it being similar to pregnant women was, could it be a chemical/hormonal imbalance, particularly if it can be triggered by medication.

Also just wanted to say that you have my sympathies. It sounds absolutely horrid and I hope that you can find something that works. Must make social eating almost impossible. (((HUGS)))
 
Wow, I feel like I have met some very good neighbours in the Diabetes Community. Plus am getting a free university education in a lot of diabetes care. Thank you everyone. (I don't want to create a nuisance with too many separate replies, so will bunch the replies in one message here.)

@42istheanswer You just taught me something new and potentially very helpful. I'll investigate.

@Sarahp That's the feeling exactly.

@Lucyr Yes, that makes a lot of sense. I'll look back at this the next time I have this problem and use it as a starting point to think about what's happening and why.

@rebrascora Appreciate the sympathy, it helps! The social eating is OK, but only because I have wonderful friends. Once I got over my self-consciousness and explained what was happening, to a person they have been happy to cook within my ridiculous constraints; and understand if I'm having a bad day and can't eat anyway. It helps that I eat like an 8-year-old and everyone likes that kind of comfort food. Your advice about shakes is something that does in fact help -- some days it's the only way I can get a good batch of protein in. Hugs to you too!
 
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