New partner is type 1 diabetic, need advice

[Rokaab]

Sorry but i noticed your also a coeliac? diabetes and coeliac disease arent usually things that pair up and its considerably unfortunate if they do,

As Lucylocket61 mentions, yes unfortunately they are, if you have diabetes your're more likely than the average person to have Coeliac as well (don't know how much mind) and yes it is a PITA!

Also do you know any shops that sell gluten free food at reasonable prices? My coeliac friend whom at one point in her life lived in the same city as me suggested morrisons but they dont deliver and I feel like theres a limited amount of shopping we'd be able to carry 0.6 miles? Thats why i do the monthly asda shop its litterally delivered 10 feet from my fridge

I mostly just go to the FreeFrom sections is my local supermarket - Asda is my nearest one and it's selection is OK (though they have never stocked the shelves in my local one when I seem to go along ...), Morrisons and Tescos are supposedly very good but neither are particularly close to where I am. It has involved a lot of ingredient list reading to see what I can and can't have - for instance tortilla chips - the asda homebrand ones were ok when I last had some, but branded ones I checked were not.
As for eating out, a lot of the big name Pizza places now have gluten free menus (Pizza Hut, Pizza Express, Prezzo), Indian restaurants tend to be mostly gluten-free - though you'd need to check with them about contamination from gluten, I've found a number of other pubs and places (ones that do not cost an arm and a leg) have GF menus but some can't guarantee no contamination - luckily for me I can cope with small amounts - all that small amounts do to me is make me fart a lot

 

[scotteric]

How do I convince him to take his insulin before meals instead of after?

You can't. He has to want to take control of his disease, you can't force him anymore than you can force someone to lose weight or quit smoking - they have to want to do it for it to work. It's more complicated than this anyway because foods digest at different rates and some require some insulin up front and some later on. Steak and McDonald's for example are high fat meals - they will digest for hours beyond eating them and may require additional injections beyond an injection before eating them. This only applies once again if the basal dose is set right however. The dextrose pills probably aren't doing much because he has too much insulin on board, either from a basal dose that is way too high or taking too much NovoRapid after meals. Blurry vision during lows is common, it isn't necessarily an eye problem. Poorly managed diabetes can certainly lead to eye problems in the future though (along with a host of other problems)!

 

[Grant_Vicat]

He does it every morning before breakfast and has started doing it a few times a day since his last hospital admission but i swear most of his insulin doses are just guess work which i find concerning even though hes never been wrong appart from that one hypo, but one hypo is enough for you to DIE so yeah I want to encourage him to check more frequently without coming accross as controlling/patronising. How often would you recommend testing?

Hi GlucoseGuardian
In no way would I try to underestimate the seriousness of hypos, but I regularly read in papers how somebody has saved a diabetic's life by giving them sugar. In the 54 years I had Type 1 I must have had over a hundred hypos, including the following that appears in the book I'm holding in the picture:
1979 At a party in Haringey, hosted by one of Helen’s predecessors: The hostess, called Julie, left for work at Harrods, with Yours Truly unconscious on a sofa. She telephoned at 12.45. “You still there?” After my baffled response, I put the phone down and tried to think about my state of affairs. I had a raging headache, my vision kept disappearing, and worryingly, I was experiencing a total memory loss. I started to pace around the stark room like a leopard in its too confined quarters. What the hell is wrong? This is not a hangover. I need to talk to someone. My father. What’s his name? Where does he work? (He retired in 1985 and I still remember his number – 01 405 9222 ext 6036) Brain’s battery was completely uncharged then. As I sped around the room in increasing panic, I chanced upon a directory. With my focus looming in and out, I flipped through the pages in the vain hope I might recognise anything. Something suggested the word “assurance” and I had enough cognitive function to write it down. Minutes later I was through to some saint (female) at the switchboard. Why she didn’t think “We’ve got a right one here” I’ll never understand. She deserves recognition.

“Er, er, Oh God, what’s his name?”

“Don’t worry love, which department is he in?”

“Er, ....... Oh blimey I can’t think.”

At this point she began reading down the list until she said:

“Job Evaluation?”

“That’s it!”

I’m a great believer in fate. Normally one of three lovely secretaries would have answered the phone, but for some reason my father himself answered. I must have been able to tell him my whereabouts, because I remember him giving me some chocolate in the flat. The rest is blank until 6.30 the following morning. I had been put in Johanna’s bedroom (I think she was away at college in Oxford at the time) and my father put his head round the door to check progress. He found me with the top of my head on the floor, followed by most of my torso. He managed to get me back on the bed and then tried to give me warm sweet tea. I hit him. Apparently it took both my parents to hold me against the wall and get some in. Had they the luxury of a Glucagon injection, I’m sure they would have used it.

Helen is my wife (since 1982) and she has been a vital part of my survival to this day. The girl with the most responsible attitude to diabetes in my friendships who has been sworn at and lied to when faced with this semi-conscious patient! This has certainly been a major factor in our flourishing relationship. I hope you are successful in your mission.

 

[GlucoseGuardian]

yes, yes they are: https://www.glutenfreeliving.com/gluten-free/celiac-disease/celiac-disease-and-diabetes/

two of my type 1 friends are celiac

hmm.. one of my patients at the hospital is also a t1 and coeliac.. however I can't find any actual evidence of this correlation, the website you shared didnt have any references from scientific literature which is strange considering the author claimed to be a doctor and would therefore have had to use references to scientific literature when referring to anything that he was claiming to be a fact, even undergraduates and junior doctors are required to do this. Even wikipedia uses the referencing system ***. I feel like this is probably a result of the gluten free food industry realising they werent making a decent profit off the coeliacs and are therefore convincing people that being gluten free is has health benefits? A primary school near me is introducing gluten free only meals to the children because they've been convinced gluten causes autisim? That is basic high school biology level stuff right there, gluten can't pass the blood brain barrier, full stop, so how can it possibly affect the brain? I've managed to find one paper backing this claim up in a seriously low rated journal where their argument is something analogous too "all houses that have caught on fire contained a toilet, therefore toilets cause house fires"

in short not convinced but i'd love for you to attempt to change my mind.

but anyway, gluten free restaurants? shops that sell gluten free food at a reasonable price?

 

[lucylocket61]

Have a look at this lot: https://www.google.co.uk/search?q=d....69i57j0l5.16676j0j8&sourceid=chrome&ie=UTF-8

 

[lucylocket61]

i'd love for you to attempt to change my mind.

I dont have time, but have included a link for you of stuff from this site and others.

 

[DCUKMod]

hmm.. one of my patients at the hospital is also a t1 and coeliac.. however I can't find any actual evidence of this correlation, the website you shared didnt have any references from scientific literature which is strange considering the author claimed to be a doctor and would therefore have had to use references to scientific literature when referring to anything that he was claiming to be a fact, even undergraduates and junior doctors are required to do this. Even wikipedia uses the referencing system ***. I feel like this is probably a result of the gluten free food industry realising they werent making a decent profit off the coeliacs and are therefore convincing people that being gluten free is has health benefits? A primary school near me is introducing gluten free only meals to the children because they've been convinced gluten causes autisim? That is basic high school biology level stuff right there, gluten can't pass the blood brain barrier, full stop, so how can it possibly affect the brain? I've managed to find one paper backing this claim up in a seriously low rated journal where their argument is something analogous too "all houses that have caught on fire contained a toilet, therefore toilets cause house fires"

in short not convinced but i'd love for you to attempt to change my mind.

but anyway, gluten free restaurants? shops that sell gluten free food at a reasonable price?

Gosh GlucoseGuardian; which city do you live in? You seem to have bumped into more T1 folks than most people meet in a lifetime. Many T1s arriving here have never met another T1 in their "real lives". I know my nearest city has quite a high proportion of people with diabetes.

 

[Antje77]

I remember him giving me some chocolate in the flat.

Great description of a horrible hypo, Grant Vicat. I only react to let @GlucoseGuardian know that regardless of what Grant Vicat's father did, chocolate is not the best treatment for a bad hypo.It seems the fat relays the effect of the glucose, so better use sweets, coke (the drinkable kind ), lucozade, dextro, glucose tablets, undiluted lemonade or plain sugar or so. Only after getting to reasonable blood sugars, consider eating something more substantial.

 

[Grant_Vicat]

Great description of a horrible hypo, Grant Vicat. I only react to let @GlucoseGuardian know that regardless of what Grant Vicat's father did, chocolate is not the best treatment for a bad hypo.It seems the fat relays the effect of the glucose, so better use sweets, coke (the drinkable kind ), lucozade, dextro, glucose tablets, undiluted lemonade or plain sugar or so. Only after getting to reasonable blood sugars, consider eating something more substantial.

You are, of course dead right, but knowledge of best dietary practice then was at best primeval.

 

[Antje77]

You are, of course dead right, but knowledge of best dietary practice then was at best primeval.

Your father was completely right, it's what my ex-boyfriend did in 1997 I only wanted to warn Glucose guardian not to follow your fathers example, as they seem to be completely new to this whole diabetes thingy.

 

[Antje77]

shops that sell gluten free food at a reasonable price

I might be a bit thick, and not suffering celiac intolerance. But wouldn't that be all supermarkets that sell vegetables, cheeses, meats, eggs and fruit? Carrots are not much more expensive than spaghetti. Today I ate tomatoes with cheap mozzarella and olives for starters and broccoli soup with cream cheese, onions and bacon or mains. Very cheap, an as far as I know no gluten. I could be wrong, as no experience with gluten-free. Forgive me if I am.

 

[GlucoseGuardian]

Gosh GlucoseGuardian; which city do you live in? You seem to have bumped into more T1 folks than most people meet in a lifetime. Many T1s arriving here have never met another T1 in their "real lives". I know my nearest city has quite a high proportion of people with diabetes.

Leicester, UK. I've lived here six, almost 7 years. the first two t1s i met were fellow students at UoL i met the first in 2011 and the second in 2015, considering i've probably met thousands of students in the five years I was studying this doesnt even border on statistically unlikely that two of them were t1, infact i find it more statistically interesting that they were both openly gay men, even my boyfriend is bicurious. my mothers, collegues,son i've never met but see his story as a complete horror story which no mother should ever have to go through. I've been working at a hospital for two years and, funnily enough, most patients that come in have something wrong with them so I was bound to come across one or two diabetics. the patient i was refering too is the only female t1 i've ever met and she was in her 60s which made me feel better about my boyfriends claims that he probably wont make it to 40.

I work in mental health and at a meeting today we were asked where we think the new funding should go, like what outreaches we could pursue, from the list we narrowed down I chose to pursue the effects of diabetes on mental health, my boss gave me this website and a phone number for a diabetes support group in leicester and gave me a week to provide a rationale for why our new funding should go into this area.

I find it interesting that most t1s have never met another t1? My boyfriend asked to see my t1 friends facebook profile last month which I thought was weird.. then a few minutes ago he text me saying 'i guess your talking to [t1 friends name] about your work assignment instead of me.' I told him earlier that, although it would be the truth, I can't argue that every diabetic i've met also suffers from depression, and i definitely can't therefore assume that diabetes causes depression! I didnt tell him I'd post on a forum but I did tell him I wanted to speak to at least 20 diabetics about their mental health experiences before I wrote my rationale. It could be a complete coincidence that all the diabetics I've met suffer from depression, why should we put money into this? It probably only stuck out to me as an interesting option because the man I'm in love with is a t1 diabetic so i had a personal interest! If you don't think government funding should go into the mental health care of diabetics then please let me know. what areas of mental health which arent currently covered by the nhs would you like to see funded? the other two things i opted for were autism, and transgender but i've already wrote about those topics before so its easier.

 

[NoKindOfSusie]

Can I ask a serious question?

People have accused me of being depressed. Well, I was recently (september) told that I am going to be sick forever, never get well, die young, risk horrible complications and in the meantime it's going to make my life hell with drugs and testing every couple of hours to the point where it makes career and social life almost impossible. I am not happy. But "depression" is a mental illness, right? It doesn't feel like I am doing anything irrational here. I'm not making any of this up. So why would anyone expect me to be anything other than depressed? Why would it be an illness, why wouldn't it be a completely reasonable reaction to the world as it is?

 

[lindijanice]

Hey GlucoseGuardian, welcome to the Forum. After reading all that you have shared, I am going to take the liberty to ask you a couple or three questions.....the first thing I noticed was your avatar "Glucose Guardian", which to me is a red, red flag....this is not your disease and not your responsibility, it is clearing your boyfriend's and his alone. If he were 10, then , yes, perhaps the avatar would fit. Secondly, your feeling so guilty and beating yourself up for not calling your emergency number (I was going to say 911 because I am in Canada, but, is it 111?). Anyway, I have a sense that this is going to be repeated over and over again and all the while you will be blamed because he wants to be treated like a kid.....time to grow up and look after himself. Thirdly, saying he will go for blood tests and then not following through, that is dishonest, so what else may he not be honest about??? I know I am sounding harsh and judgmental, but honestly, it is time for him to put on his man pants and take responsibility, and maybe you need to take some time for yourself and really evaluate this explosive relationship and if it is worth it for your mental health and emotional well being....'nuf said. Take care/L

 

[Mike d]

Well, I was recently (september) told that I am going to be sick forever, never get well, die young, risk horrible complications

Who told you that?

 

[Deleted Account]

@GlucoseGuardian welcome to the forum.
I admire your caring attitude and interest in getting to learn about diabetes for your boyfriend.

You have bought up many questions in this thread (which is what the forum is here for).
Many have already been answered but I have some comments/answers to add to all this information.

He claims to only be admitted to hospital about once a year, since he was diagnosed at the age of 6 and is now almost 21.

In my experience, one hospital admission per year due to diabetes complications is A LOT.
If this has been your boyfriend's experience for the last 15 years, I can see how he would think it is normal.
However, I do not think it is.

How often would you recommend testing?

The usual recommendation is
- before every meal
- before going to bed
- before driving ... and every 2 hours when on a long journey
- before and after exercising

So, if my car stays at home and I don't go to the gym, this is 4 times a day but is often more.

why do peaks cause lows?

This is not something I have experienced unless I over-correct my peaks.
Sometimes, low cause peaks when the body responds to the lows by releasing lots of glucogen

Whats a dafne course and how do i sign up?

As @therower explained. DAFNE is a course the NHS provide in some areas. It may have a different name in your area. For example, it is called "Freedom4Life" in my area. Your boyfriend would have to attend his annual reviews to be referred to such a course.
There is an online course which is often recommended and I understand covers similar topics to DAFNE: https://www.bertieonline.org.uk/

I feel like he is quite consistent in the calories per meal thing

Do you mean calories or carbs?
To calculate how much insulin to take with meals, you need to count/estimate how many carbohydrates are in your meal. Calories do not impact BG.

 

[Deleted Account]

Well, I was recently (september) told that I am going to be sick forever, never get well, die young, risk horrible complications and in the meantime it's going to make my life hell with drugs and testing every couple of hours to the point where it makes career and social life almost impossible.

This is a horrible thing to be told. With this kind of introduction to diabetes, I can understand why you are scared.

When I was diagnosed, I was introduced to a wonderful nurse who explained that diabetes should not stop me doing whatever I wanted ... I have tested this plenty of times ... and if I manage my diabetes, I can significantly reduce the risk of horrible complications ... which is why I continue to educate myself about diabetes and test as often as possible.
This positive introduction has really helped me mentally deal with my condition (I don't consider it an illness although I know technically it is a disease).
I consider myself very lucky that I was diagnosed this century as we have far better knowledge about diabetes care and reducing the complication risk.
Reading through the forum since I joined, I realise I am not alone in my approach to diabetes but it is not always easy.

 

[kev-w]

If he's had sugar for 14 years and struggling as described in your first paragraph then you'll struggle, hypos are one thing as they can sneak up on you if preoccupied but high bloods causing ketones are very noticeable, and mostly caused by not testing and not eating sensible food, or by insulin stopping working (usually the basal) or by skipping jabs.

As a T1 it's your responsibility to carry hypo treatment and know your 'vulnerable' times, to test regularly (helps prevent any of the above) and to manage your own insulin storage if out and about.

For repeats, just find a chemist that has a collect service, drop repeat form off at chemist and collect 2 or 3 days later, the odd time you mess up your surgery will help you out with a short notice script.

My last ex swears she'll never date another T1

 

[tim2000s]

Nobody's gonna want to buy those if they aren't diabetic.

Unless they are a power lifter.....

GPs are open 9-5 and he works 7-5 so its not really an option for him to have to repeatedly go to the gp everytime he runs out of something, I feel like once you have the diagnosis you should be able to pop to the nearest pharmacy as and when you please to get whatever you need.

That's why we have online systems from the GP surgeries where you can reorder at a time that suits you and pharmacies are able to request repeats at intervals specified by you.

the life expectancy of a t1 diabetic is considerably lower than my life expectancy so its an inevitability that, if we make it that far, he will die in my arms, or worse, whilst i'm at work.

If he continues as he is, then yes, he will. I've nearly 30 years of T1 under my belt and @iHs has over fifty. In that time I ended up in hospital once as a result of finishing exams and getting far too drunk, which resulted in DKA. I've had no hospitalisations as a result of hypos (even if there were a couple of ambulance call outs).

This doesn't have to be the way. It requires a change in mindset though.

It could be a complete coincidence that all the diabetics I've met suffer from depression, why should we put money into this?

I'd say it is. There are plenty of t1s that haven't suffered from depression, or other mental illnesses, but, and it is an important but, there is a much higher rate of depression and mental health problems amongst those with long term diseases, including Diabetes. As the image below shows, in general 20% of the UK population suffers mental health issues, and a disproportionate 30% of people with long-term conditions have mental health problems (report source from 2012). There's also more detail on that here.

As for Coeliac, there's a long established link between co-morbidities related to autoimmune conditions. Coeliac (along with others) is covered in these articles: https://www.ncbi.nlm.nih.gov/pubmed/16403820 & http://spectrum.diabetesjournals.org/content/15/3/197

 

[JoeT1]

Can I ask a serious question?

People have accused me of being depressed. Well, I was recently (september) told that I am going to be sick forever, never get well, die young, risk horrible complications and in the meantime it's going to make my life hell with drugs and testing every couple of hours to the point where it makes career and social life almost impossible. I am not happy. But "depression" is a mental illness, right? It doesn't feel like I am doing anything irrational here. I'm not making any of this up. So why would anyone expect me to be anything other than depressed? Why would it be an illness, why wouldn't it be a completely reasonable reaction to the world as it is?

You NEED to talk to somebody about this.

There is no reason for you to die young with a controlled A1C.