# can’t cope anymore



## Whitney (Dec 16, 2020)

hello, I’ve posted a few times now over the years about this same problem which has never got figured out and is getting worse, I am officially at breaking point with my diabetes. Everytime I eat I get sore eyes (which are visibly puffy and red) headaches, overwhelming fatigue, constant yawning, the feeling of needing to stretch my entire body, muscle cramps, extreme brain fog and not being able to concentrate and being extremely forgetful. The only way I can avoid this is to not eat and therefore I starve myself all day until dinner time at about 8pm. I can’t get a job because if I had a job which started at 9 if I ate breakfast I would be knocked out and unable to work. I have been to both my diabetic team and my GP and none of them care anymore now that they’ve eliminated all the obvious things such as coeliac disease, thyroid problems etc. The problem started AS SOON as I got home from the hospital 4 years ago with my type 1 diagnosis and therefore I still believe it’s something to do with diabetes but the diabetic team do not think it is. I constantly contemplate taking my own life If this problem does not go away soon as it genuinely is debilitating and I can’t take much more of this, I’ve been asking for 4 years now and I am no closer to finding out what the problem is and I spend all my time crying and feeling angry. If anyone has any advice or has had similar symptoms please let me know.


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## Paulbreen (Dec 16, 2020)

Hi Whitney, I’m sorry to hear how you are feeling it must be terrible. Unfortunately I have no simple answers for you and all I can offer is support as someone who you could talk to if you need a friend even if it’s just to vent to.
As a fellow T1 suffer I know how hard it can be to come to terms with. After 4 years you must have asked every question to your team. Just my unqualified 2 cents but those symptoms sound like an allergic response to something, maybe your medication could be the culprit more than the food if it happens each time you eat.
Like I said I’m here if you do want to talk to someone, I pop in several times a day so will eventually see a message and I know for sure your going to get more support when the great people here start to wake up and see your message


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## Whitney (Dec 16, 2020)

Paulbreen said:


> Hi Whitney, I’m sorry to hear how you are feeling it must be terrible. Unfortunately I have no simple answers for you and all I can offer is support as someone who you could talk to if you need a friend even if it’s just to vent to.
> As a fellow T1 suffer I know how hard it can be to come to terms with. After 4 years you must have asked every question to your team. Just my unqualified 2 cents but those symptoms sound like an allergic response to something, maybe your medication could be the culprit more than the food if it happens each time you eat.
> Like I said I’m here if you do want to talk to someone, I pop in several times a day so will eventually see a message and I know for sure your going to get more support when the great people here start to wake up and see your message


Thank you for your reply! For four years I have begged and begged for both the diabetic team and the GP to investigate the symptoms properly and nothing has yet to be done about it and I am tired of asking now. Last time I was there I mentioned how maybe it could be the insulin as it happened as soon as I got home from hospital after diagnosis 4 years ago however, they pretty much denied my request to change medication, they’re always saying “your hba1c is great! Why change insulin?” And Im here starving myself on one meal a day, probably the only reason why it’s ok. they then referred me to the gp to get allergy tests done for the gp to only laugh over the phone and say “you have to know what you might be allergic to it’s not that simple” & told me I couldn’t have any tests done. I don’t think I can live like this much longer. I hope someone on the thread will have experienced these symptoms and reply with some hope


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## Inka (Dec 16, 2020)

@Whitney King It was me who said it could be your insulin. What you describe has been linked to human/analogue insulins. You MUST be more forceful about asking for a change. Don’t take No for an answer. Take someone with you or write a request.

If it’s not the insulin, at least you’ll have ruled that out and be closer to the cause.

Write a letter or email to your team if that’s easier. You’ll have to push because they won’t agree straightaway but they will agree in the end - because they have to.

You need to advocate for yourself and push. Nobody does anything unless you push a bit, I’ve found. They’re quite happy to let people limp along as long as their HbA1C is ok. It’s your life and your body. You’re not under the dictate of your team. Push and stand firm!

You’ve ruled out quite a few things and that’s excellent. Keep going and you’ll find the answer. X


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## Paulbreen (Dec 16, 2020)

I think Inka is right that you need to push your team to do what you want, I can’t believe that they won’t change your insulin because the more you say the more it points to the insulin.
I know it can be hard for some people to be forceful but I think in this case it is needed. 
do you have someone who can help you with that? It sounds like your team are a bunch of ASH!*?ES to me and your GP is no better.
It’s easy to have great BG if you don’t eat anything!


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## Thebearcametoo (Dec 16, 2020)

It sounds like a systemic allergic reaction whether that’s to the insulin or to food is hard to tell but a change of insulin would be a simpler way to test the theory than trying to find food triggers. The other thing to ask about is MCAS which is a sort of extreme allergic reaction. It may be that whatever you’re allergic to was one things but is now many things.

Your mental health matters as much as your physical health and there’s no reason to not try another insulin if it would improve your well-being. Write to your GP and diabetes team (just copy one into the other) outlining the issues you’re having with allergic reactions, weight loss, and depression. Or if your GP is good push them to push your diabetes team. They tend to be good advocates if they understand the issue. If it is something like MCAS that’s harder to get a diagnosis of because there aren’t many specialists but asking for it to be ruled out can be a path to getting some investigation.


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## ColinUK (Dec 16, 2020)

Speak to the helpline here and see what tactics they can suggest for getting a more reasonable response from your primary care team.

03451232399


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## Inka (Dec 16, 2020)

And contact IDDT as I think I mentioned in your previous thread. They are extremely helpful regarding problems with human/analogue insulins.

https://www.iddt.org/here-to-help

https://www.iddt.org/about/gm-vs-an...ltant-refuses-to-change-you-to-animal-insulin

https://www.iddt.org/about/gm-vs-animal-insulin/allergic-reactions-to-insulin

.


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## Inka (Dec 16, 2020)

Ask for a 3 or 6 month trial of animal insulin. They can’t refuse - although they will try to dissuade you and be uncooperative. If you stand firm, they’ll concede in the end and you’ll get your trial.

You sound very down (understandably) so if you have someone to go with you or back you up, that would be good. You’ll find the team pay more attention then! Ignore any cr@p they say about ‘old-fashioned’ or whatever. The Dept of Health has acknowledged some people simply do not get on with GM insulins.


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## Bloden (Dec 16, 2020)

Hi @Whitney Queen. I’m so sorry to hear about your problem and how it’s affecting your mental health. The only thing I can add to everyone else’s advice and encouragement is: Can you film yourself having this awful allergic reaction? A friend of mine is going thru something similar and his words are simply not enough when his results all come back clear. (((Hugs))).


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## Whitney (Dec 16, 2020)

Inka said:


> @Whitney King It was me who said it could be your insulin. What you describe has been linked to human/analogue insulins. You MUST be more forceful about asking for a change. Don’t take No for an answer. Take someone with you or write a request.
> 
> If it’s not the insulin, at least you’ll have ruled that out and be closer to the cause.
> 
> ...


Thank you for taking the time to reply again to one of my posts, I’m sorry that you had to read all of it again but I had a bad experience with the GP yesterday and I felt the need to write again. I have again emailed my diabetic team asking for a change, this time being more demanding of it and they said they’d get back to me tomorrow, I am hoping that they say yes and I think I will genuinely cry with happiness if changing insulin’s turns out to be the solution, living with these symptoms for four years has ruined so many social events, holidays etc as if you go out for a coffee and cake with your friend I will start to lose focus on the conversation and feel the need to go home within twenty mins. I’m only 22 so I still go on nights out with my friends and I regularly have to say no and miss out on all the fun. With holidays theres been times when I had to stay at the hostel and sleep when everyone else goes out exploring museums etc and having fun and in regards to simple things like watching the television or playing video games I am unable to concentrate on them for more than like ten minutes at a time. Thank you for your kindness and time, if it does turn out to be the insulin I will be forever thankful for you


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## Ditto (Dec 17, 2020)

I hope it is the insulin then @Whitney Queen. I’m so sorry to read of your troubles. I feel guilty for always moaning now about trifles. You made me laugh about the museums, it's ages since I was in one.


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## Josh DUK (Dec 17, 2020)

Whitney Queen said:


> Thank you for taking the time to reply again to one of my posts, I’m sorry that you had to read all of it again but I had a bad experience with the GP yesterday and I felt the need to write again. I have again emailed my diabetic team asking for a change, this time being more demanding of it and they said they’d get back to me tomorrow, I am hoping that they say yes and I think I will genuinely cry with happiness if changing insulin’s turns out to be the solution, living with these symptoms for four years has ruined so many social events, holidays etc as if you go out for a coffee and cake with your friend I will start to lose focus on the conversation and feel the need to go home within twenty mins. I’m only 22 so I still go on nights out with my friends and I regularly have to say no and miss out on all the fun. With holidays theres been times when I had to stay at the hostel and sleep when everyone else goes out exploring museums etc and having fun and in regards to simple things like watching the television or playing video games I am unable to concentrate on them for more than like ten minutes at a time. Thank you for your kindness and time, if it does turn out to be the insulin I will be forever thankful for you



Hello @Whitney Queen ,

I have sent you a private message. Could you please respond back to me when you can?


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## RirisR (Dec 17, 2020)

If it isnt the insulin, have you considered the condition ME ?
( Chronic fatigue syndrome) just a thought   you appear to have some symptoms that relate its
just a thought might give you an idea if you google it, hope you get sorted soon xx


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## Whitney (Dec 17, 2020)

Inka said:


> Ask for a 3 or 6 month trial of animal insulin. They can’t refuse - although they will try to dissuade you and be uncooperative. If you stand firm, they’ll concede in the end and you’ll get your trial.
> 
> You sound very down (understandably) so if you have someone to go with you or back you up, that would be good. You’ll find the team pay more attention then! Ignore any cr@p they say about ‘old-fashioned’ or whatever. The Dept of Health has acknowledged some people simply do not get on with GM insulins.


They have replied to my email and are putting me on humalog instead of novorapid as of Monday. Not sure if this will make a difference as it’s another analogue but no harm in trying I suppose. They haven’t told me whether it’ll be the same number of units per amount of carbs so I’ll just presume it is.


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## Paulbreen (Dec 17, 2020)

Whitney Queen said:


> They have replied to my email and are putting me on humalog instead of novorapid as of Monday. Not sure if this will make a difference as it’s another analogue but no harm in trying I suppose. They haven’t told me whether it’ll be the same number of units per amount of carbs so I’ll just presume it is.


Hi Whitney Queen, I'm glad to see you making a little progress what the difference between those 2 insulins are I have no idea, I was on Novorapid for 20 years myself, I would check back with your team regarding Carb to Insulin ratio just in case there is a difference, its better to know than just suck it and see, I would say someone here come along soon who knows a little more. Don't worry about being a nuisance either this is your life here at the end of the day.
Best wishes Paul..


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## Inka (Dec 17, 2020)

Whitney Queen said:


> They have replied to my email and are putting me on humalog instead of novorapid as of Monday. Not sure if this will make a difference as it’s another analogue but no harm in trying I suppose. They haven’t told me whether it’ll be the same number of units per amount of carbs so I’ll just presume it is.



Well, it’s a start, I suppose. Yes, Humalog is another analogue. It’s pretty much the same as Novorapid so same carb ratios. But do test lots and watch your pre-bolus timing as I found it works slightly more efficiently than Novorapid.

Give it a try and if it doesn’t help, get right back on to your team. Keep detailed records so you personally can see if there’s any difference, but also so your team can see you’ve given it a proper trial.
You can always rant or moan here. It must be horrible for you and you have my sympathy. X


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## trophywench (Dec 17, 2020)

Well the thing is totally different manufacturers.  Novo Nordisk are Danish and Eli Lilly are Canadian - hence even if the recipes were identical, the ingredients would have been sourced from different locations if nothing else.

Yeah, Humalog and Novorapid are reckoned to be pretty similar, though most insulins have their own personal little foibles in the odd thing here or there and all anyone can do, is try em and see how they suit!  We ARE all different, hence it's no surprise that exactly the same insulin doesn't suit every one of us.  My body ruddy loathes a good many BP drugs and one GP probably regretted having said 'Well there are hundreds of different ones, we'll just keep trying!' to me,  But, we both persevered and found the right frog to kiss in the finish.


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## Bloden (Dec 18, 2020)

I hope this solves the problem @Whitney Queen.


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## helli (Dec 18, 2020)

I trialed Humalog as an alternative to NovoRapid. 
The dose was exactly the same. 
But my reaction to it was not so they are clearly different recipes. However, my reason for the trial was to see if it would act any faster than NovoRapid. It was even s-l-o-w-e-r for me. 

We are all different so the reaction may be different. 

(I am now on Fiasp and it is better for me in terms of speed but I have never experienced any reaction to any of the insulins I have tried.)


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## Inka (Dec 18, 2020)

Humalog is lispro GM produced on e-coli, and Novorapid is aspart GM produced on yeast. I suppose in theory one GM production method might suit some people more than others.

Neither of them are officially insulin. They’re both analogues of insulin, manipulated to try to get a faster action. How much faster this action is depends on the individual. IMO, the speed is always ‘downgraded’. I remember when Humalog was first introduced and the whole selling point was how you could inject literally as you were about to eat, or even afterwards blah blah. Now it’s 10, 20 or even more minutes beforehand, and the earlier promo is conveniently forgotten.


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## Whitney (Dec 19, 2020)

Josh DUK said:


> Hello @Whitney Queen ,
> 
> I have sent you a private message. Could you please respond back to me when you can?


I have replied! Thank you for your help!


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## everydayupsanddowns (Dec 19, 2020)

Fingers crossed the switch to Humalog makes a big difference for you. I wonder if the allergic reaction (if that’s what you are experiencing) might take a few days/weeks to dissipate? Might be worth sticking with the Humalog for a little while to see if things improve gradually.

Just such a shame it has taken this long to get even this small simple change tried.

Let us know how you get on. Hope the switch goes smoothly BG-wise too.


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## Annemarie (Dec 19, 2020)

@Whitney Queen because you are so badly affected perhaps you not in the best place to fight your cause. Speak with your local health authority to ask if you can have a ‘buddy’ to support you. I know education authorities have knowledgeable supporters, I can only think of PALS regarding medical issues but there may be others. Perhaps DUK legal advice have suggestions? Stay strong, you’re fighting your way onwards, I hope the best wishes from your new friends at DUK help you to triumph


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## dawn5 (Dec 19, 2020)

Well done for being so courageous when you have been feeling so bad for so long. Your GP was out of order for laughing and your team seem to move at snail's pace, so keep on standing up for yourself and push for what you need (hard when you are feeling poorly and on the back foot, but you can do this). This is your life, it is worth living and you have the right to be treated properly. Hang onto that courage of yours, stay strong, stay calm and try some relaxation to help you focus on how to proceed. Hugs x


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## trophywench (Dec 19, 2020)

Just {{{hugs}}} from me, cos anything I could say, someone else has already.

Sadly even in this day and age, we still sometimes need to kiss an awful lot of frogs before we find our prince, but honestly - you can and you WILL.


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## Ralph-YK (Dec 19, 2020)

trophywench said:


> Sadly even in this day and age, we still sometimes need to kiss an awful lot of frogs before we find our prince,


We've lost a lot of Princesses through them kissing frogs. And we've had to build more ponds for the extra frogs!
[Attempt at a joke ]


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## Whitney (Dec 20, 2020)

Hi guys! Thanks for all your recent replies, been really bad today. Had scrambled eggs, sausages and baked beans for lunch (so pretty low carb they even told me to not inject for baked beans on the DAFNE course however they always effect my blood sugars so I inject for them anyway) and as soon as I finished I had to go straight back to bed as my entire body went weak. I am really praying that the humalog will make a difference because I really don’t think I can/want to continue like this. It’s really frustrating because every diabetic team appointment I’ve had over the years with the diabetic doctors, hba1c appointments, nurse appointments, during DAFNE etc I have mentioned this tiredness. When I completed DAFNE it was a 7 day 9-5 kind of thing at the hospital and they wanted us to eat lunch every day to see how our bloods would be effected and everyday after lunch I would just feel so weak and complain to them and it’s frustrating that only now after 4 years of complaining about these symptoms that they’re actually trying something by changing my insulin. I had to change GP recently as I was called into an appointment and I burst out crying to him and literally sat there BEGGING him for about fifteen minutes to do something like tests etc and he just opened the door and told me to leave. I’m really worried that it’s not going to be the insulin and that I’m just going to be Ill forever.


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## Whitney (Dec 20, 2020)

Olive said:


> If it isnt the insulin, have you considered the condition ME ?
> ( Chronic fatigue syndrome) just a thought   you appear to have some symptoms that relate its
> just a thought might give you an idea if you google it, hope you get sorted soon xx


Might mention this in my next appointment!


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## Whitney (Dec 20, 2020)

helli said:


> I trialed Humalog as an alternative to NovoRapid.
> The dose was exactly the same.
> But my reaction to it was not so they are clearly different recipes. However, my reason for the trial was to see if it would act any faster than NovoRapid. It was even s-l-o-w-e-r for me.
> 
> ...


I suggested fiasp as I thought the tiredness could be due to the rise of blood sugar after eating, and because novorapid and humalog don’t reach their peak until about an hour after injecting. However, they said that I wouldn’t be suitable for it because I have a bit of hypo anxiety. I’m thinking of asking them for a pump like the omnipod incase like the permanent release of small amounts of background insulin would help the tiredness and sore eyes etc. However, I’m very doubtful that the nhs would allow me to have a pump and especially the omnipod as I’ve heard stories about people having to wait about two/three years to get the pump and most people not even being deemed accepted. I feel like if I were to be offered a pump I’d be offered one of the ones with the tubes and which are a bit chunky however I feel like one like the omnipod would suit me better.


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## nonethewiser (Dec 20, 2020)

2-3 years seems excessive & can't see it being true reflection, got my pump in 3 months from date of asking.


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## Perfect10 (Dec 20, 2020)

Hi Whitney queen, sorry to hear what you are going through, I have no idea about insulins but hope a change will sort it out xx


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## Paulbreen (Dec 20, 2020)

Hey Whitney queen, don’t rule out other pumps I used a Meditronic one with a tube and it’s no problem at all. In fact I wouldn’t want a pump stuck to me I would imagine it could be uncomfortable in bed.
Fingers crossed for you the new insulin helps your situation


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## Inka (Dec 20, 2020)

@Whitney Queen Don’t despair. You’ll find the answer, I’m sure. It’s a tedious process of elimination, but you’re doing ok and progressing along that path of eliminating possibilities. Stay positive. 

You can reduce post-meal spikes by carefully moving your bolus injection more in advance. Keeping big spikes down will help you generally feel a little better as will reducing hypos. Every little thing can help - sleeping well, eating well, getting fresh air. Those things won’t solve your problem, but they should make it more tolerable while you’re searching for an answer.


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## Whitney (Jan 6, 2021)

Hi everyone today was my first time injecting humalog! I was feeling fine until I ate (as usual) and like I predicted I got symptoms within ten minutes of finishing eating (fatigue, sore eyes, the constant yawning and desire to stretch my legs and arms) and I am once again at a loss, don’t know how much longer I can go on like this. Going to continue humalog for a month or so to see if my controls better than it was on novorapid if not I’ll just go back to novorapid. Starting to think that it’s never going to go away.


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## helli (Jan 6, 2021)

I second not ruling out other pumps.
I have had a tubey pump and a patch pump.
Tubey pumps have advantage of being able to move them around once attached. Many people find it relatively easy to hide their pump although I confess, being very slim this was harder for me.
My patch pump is not OmniPod because it is too expensive for my CCG. I have a cheaper Medtrum pump which is more discrete but still a bulge that can be seen with some clothes and cannot be moved without reattaching to suit my clothing for the day.

Apologies @Whitney Queen if this has already been asked but have you also considered your basal insulin? I assume you are focusing on the bolus because you have the reaction after food but I would not rule that out. 

If bolus is the problem, a pump could be an issue because the fast acting insulin is used for basal. Whereas if basal is the issue, you will not have slow acting insulin.


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## AndBreathe (Jan 6, 2021)

Whitney Queen said:


> Hi everyone today was my first time injecting humalog! I was feeling fine until I ate (as usual) and like I predicted I got symptoms within ten minutes of finishing eating (fatigue, sore eyes, the constant yawning and desire to stretch my legs and arms) and I am once again at a loss, don’t know how much longer I can go on like this. Going to continue humalog for a month or so to see if my controls better than it was on novorapid if not I’ll just go back to novorapid. Starting to think that it’s never going to go away.


Have you been checked out for any food intolerances at all?

Reading your symptoms, they are relatively similar to my reaction to gluten.  

I was advised to adopt a gluten-free diet by my Endo, whilst trying to in down the cause of a dire temperature dysregulation problem.  I didn't feel I had an issue with gluten, but thought I'd nothing to lose.  Now if I consume any gluten, it's like I've just taken a knock-out blow, with a headache for good measure.

I could just slump on the sofa and fight off sleep, except I don't then sleep.  I become bloated and have joint pains.  After 4-5days my tummy gets very upset, then I'm on the mend.  It takes me 2-3 weeks to get over gluten these days.

Whilst your symptoms and mine aren't totally mirrored, the deep, bone deep fatigue is similar.

The test for Coeliac disease is a simple blood test, although they usually add on a couple of extra auto-immune condition tests at the same time.

When did you last have a broad blood panel done, including vitamins and minerals?


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## Whitney (Jan 6, 2021)

AndBreathe said:


> Have you been checked out for any food intolerances at all?
> 
> Reading your symptoms, they are relatively similar to my reaction to gluten.
> 
> ...


Had my coeliac disease and various other things like thyroid checked a few months ago maybe 6 months ago now and nothing came up. I actually tried having a week off gluten however I still felt exactly the same after eating things like gluten free bread etc so I gave up and just started eating it again.   In terms of vitamins I’m predicting they were checked in the same test. It’s just horrible how I’ve been feeling this awful for four years and I’m no closer to finding out what’s wrong. The symptoms only started 4 years ago as soon as I left hospital after being In ketoacidosis / first diagnosed. As soon as I got home and started eating for myself and injecting I was experiencing them, every year I see the diabetic doctor and I say the same thing when he asks how my diabetes is going “I feel ill everyday so much so that I can’t work” it would be weird how a food intolerance suddenly started as well as diabetes? I asked about food intolerances and they said it wasn’t simple to test and I’ve had no advice from anyone on how to go about trying to figure it out.


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## Whitney (Jan 6, 2021)

helli said:


> I second not ruling out other pumps.
> I have had a tubey pump and a patch pump.
> Tubey pumps have advantage of being able to move them around once attached. Many people find it relatively easy to hide their pump although I confess, being very slim this was harder for me.
> My patch pump is not OmniPod because it is too expensive for my CCG. I have a cheaper Medtrum pump which is more discrete but still a bulge that can be seen with some clothes and cannot be moved without reattaching to suit my clothing for the day.
> ...


Hello there! Thanks for the reply, my next appointment with the diabetic doctor is in March I believe (it was supposed to be last March but it got cancelled because of Covid and it’s probably going to get cancelled again this year too) I’m planning on mentioning a pump, I like the idea of one without the wires more as I’m quite squeamish in terms of those types of things but we shall see what they say, I googled it and it said that there were essentially rules you have to meet in order to get it and I don’t really fit the criteria. In terms of my long acting insulin I used to be on Lantus all the time & would hypo like no tomorrow (still with the same symptoms I have now) and I switched to tresiba last year and I still feel awful. They say I’m on the right amount as I try to only eat once a day to avoid symptoms and the bloods stay in range / don’t go high or low whilst fasting so they say the background is fine. However, I may need more if I actually eat, it’s probably just staying ok because I have to starve myself to avoid feeling ill.


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## Inka (Jan 6, 2021)

Whitney Queen said:


> Hi everyone today was my first time injecting humalog! I was feeling fine until I ate (as usual) and like I predicted I got symptoms within ten minutes of finishing eating (fatigue, sore eyes, the constant yawning and desire to stretch my legs and arms) and I am once again at a loss, don’t know how much longer I can go on like this. Going to continue humalog for a month or so to see if my controls better than it was on novorapid if not I’ll just go back to novorapid. Starting to think that it’s never going to go away.



Don’t give up @Whitney Queen TBH, the Humalog wouldn’t have been my choice _because it’s still an analogue_, but I understood it was a small first change and good to rule out just in case it worked. 

If you want to rule out an insulin type intolerance, then you’d be better trying animal insulin or a normal human insulin (ie not analogue). You’ll find a lot of eye-rolling and patronising if you ask, but just stand firm. You are entitled to have an insulin type that works for you. 

When you eat and get these symptoms, do you test your blood sugar (I’m just wondering what it is in case it’s relevant in any way)?


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## Amity Island (Jan 6, 2021)

Whitney Queen said:


> Hello there! Thanks for the reply, my next appointment with the diabetic doctor is in March I believe (it was supposed to be last March but it got cancelled because of Covid and it’s probably going to get cancelled again this year too) I’m planning on mentioning a pump, I like the idea of one without the wires more as I’m quite squeamish in terms of those types of things but we shall see what they say, I googled it and it said that there were essentially rules you have to meet in order to get it and I don’t really fit the criteria. In terms of my long acting insulin I used to be on Lantus all the time & would hypo like no tomorrow (still with the same symptoms I have now) and I switched to tresiba last year and I still feel awful. They say I’m on the right amount as I try to only eat once a day to avoid symptoms and the bloods stay in range / don’t go high or low whilst fasting so they say the background is fine. However, I may need more if I actually eat, it’s probably just staying ok because I have to starve myself to avoid feeling ill.


Hi Whitney,
You're not alone. I've had a similar dismissive, unprofessional, clock watchers, response too from the very people who are supposed to be there to help you.

Can I make a suggestion. Have you tried eating a small amount inc say 20g carbs without taking any bolus insulin? What happens (besides the rise in blood sugar)? Just as a one off experiment. If there is no reaction, then that should tell you something.

Also yes, beans do have carbs and need to be bolused for, dafne have been saying you dont need to bolus for beans for years, so wrong. That's the experts for you.

Also, what does it matter to them what insulin you use? What difference would it make to their lives? If you need a different insulin, an animal based one like Inka mentioned, why shouldn't  you try it? What's the big deal? They behave like prison wardens. Luckily, I moved authority and found completely the opposite attitude, much better. 

Be strong, you can get this sorted!

We need a wholesale change in attitude, training, from those that are there to listen, help and advise.


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## Inka (Jan 6, 2021)

I’m not a naturally forward person, but I’ve found that sometimes I’ve had to ‘tell’ rather than ‘ask’. @Whitney Queen Im presuming you’re female? Never underestimate how much that and being younger can affect how others speak to you and treat you.

So, if you want to try animal insulin, don’t ask - tell them. When they see you’re serious and won’t be dissuaded, they’ll listen. X


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## Annemarie (Jan 7, 2021)

@Whitney Queen I do hope you get your appointment in March but as you say it might get cancelled again. Have you thought about making a list of what you want to ask/say when you get there? Throw it all down then take time to prioritise and fine tune it using bullet points. If your appointment did get cancelled again you can ask if you can email your list to the Consultant


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## trophywench (Jan 7, 2021)

Just ring the clinic up and ask for the consultant's email address.


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## AndBreathe (Jan 7, 2021)

Whitney Queen said:


> Had my coeliac disease and various other things like thyroid checked a few months ago maybe 6 months ago now and nothing came up. I actually tried having a week off gluten however I still felt exactly the same after eating things like gluten free bread etc so I gave up and just started eating it again.   In terms of vitamins I’m predicting they were checked in the same test. It’s just horrible how I’ve been feeling this awful for four years and I’m no closer to finding out what’s wrong. The symptoms only started 4 years ago as soon as I left hospital after being In ketoacidosis / first diagnosed. As soon as I got home and started eating for myself and injecting I was experiencing them, every year I see the diabetic doctor and I say the same thing when he asks how my diabetes is going “I feel ill everyday so much so that I can’t work” it would be weird how a food intolerance suddenly started as well as diabetes? I asked about food intolerances and they said it wasn’t simple to test and I’ve had no advice from anyone on how to go about trying to figure it out.



The thing about coeliac antibodies is their absences does not discount coeliac disease.  It just means no antibodies were found.  (Just as it is with T1.)

A week off gluten is not nearly long enough to tell if being gluten free helps.  It needs to be several weeks - more like 3 months minimum.  As someone who lives a strictly gluten-free lifestyle, I know it's not easy.  That dratted gluten seems to be everywhere.  I mean; who would have thought Cola drinks and Worcestershire sauce would be culprits?

As an aside, the thyroid testing done routinely is judged against a very wide range of "normal", usually up to a TSH of 5, and no treatment considered until a TSH of 10 is breeched.  Various papers out there suggest a person with a truly healthy thyroid would be seeing a TSH of 2 or less.

Your ketoacidosis would be a dreadful assault on your body, and nobody here can tell if the strain of it caused other changes within your body.  

Having done a massive amount of reading in my journey (hate that description) with diabetes, then latterly discovering the gluten issues and hypothyroidism, I now accept that our metabolic processes are extremely complex, with several co-dependencies to work efficiently.  Any of those co-dependencies being out of whack can cause metabolic mayhem.

Finally, I note you saying things were "OK" and you are assuming things have been checked.  Personally, I find it more comforting to know my test results as the numbers are ranges.  Then I can do a bit of background reading to understand whether my "In range" reading is almost out of range, or very good, or even not tested at all.

I do hope you get to the bottom of things


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## everydayupsanddowns (Jan 7, 2021)

Really sorry that you still haven’t been able to find any answers, and don’t seem to be getting much by way of help from the (probably mystified) HCPs @Whitney Queen 

Hope you can either get access to animal insulin to try (I agree you may have to be quite assertive to access this)... or possibly try gluten-free for a longer period?

We are rooting for you in the meantime.


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## Whitney (Jan 8, 2021)

AndBreathe said:


> The thing about coeliac antibodies is their absences does not discount coeliac disease.  It just means no antibodies were found.  (Just as it is with T1.)
> 
> A week off gluten is not nearly long enough to tell if being gluten free helps.  It needs to be several weeks - more like 3 months minimum.  As someone who lives a strictly gluten-free lifestyle, I know it's not easy.  That dratted gluten seems to be everywhere.  I mean; who would have thought Cola drinks and Worcestershire sauce would be culprits?
> 
> ...


I don’t have any of the digestion issues which are apparently common with coeliac, however, if no antibodies are being found how would they ever find out? I was thinking about ringing up the gp in regards to allergy testing do you think gluten can be tested for? Thanks!


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## Inka (Jan 8, 2021)

Whitney Queen said:


> I don’t have any of the digestion issues which are apparently common with coeliac, however, if no antibodies are being found how would they ever find out? I was thinking about ringing up the gp in regards to allergy testing do you think gluten can be tested for? Thanks!



There’s something called silent coeliac which is coeliac without the abdominal symptoms. That’s more common in Type 1s, I think. If you’ve been tested for coeliac and it’s been ruled out and done properly, you don’t have coeliac disease.

There’s also non-coeliac gluten sensitivity - that is a sensitivity to gluten in someone without coeliac. There’s also a sensitivity to wheat (wheat itself not the gluten). I think that’s what Andbreathe was talking about. There are also many more food sensitivities.

Amity had a really good idea above - eat what you ate when you took the Humalog and had your reaction BUT eat a small portion WITHOUT any insulin. That would show if it was the food. Eat it, wait for an hour or whatever to see if you have your reaction, then take your insulin to get your blood sugar down.


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## AndBreathe (Jan 8, 2021)

Whitney Queen said:


> I don’t have any of the digestion issues which are apparently common with coeliac, however, if no antibodies are being found how would they ever find out? I was thinking about ringing up the gp in regards to allergy testing do you think gluten can be tested for? Thanks!





Inka said:


> There’s something called silent coeliac which is coeliac without the abdominal symptoms. That’s more common in Type 1s, I think. If you’ve been tested for coeliac and it’s been ruled out and done properly, you don’t have coeliac disease.
> 
> There’s also non-coeliac gluten sensitivity - that is a sensitivity to gluten in someone without coeliac. There’s also a sensitivity to wheat (wheat itself not the gluten). I think that’s what Andbreathe was talking about. There are also many more food sensitivities.
> 
> Amity had a really good idea above - eat what you ate when you took the Humalog and had your reaction BUT eat a small portion WITHOUT any insulin. That would show if it was the food. Eat it, wait for an hour or whatever to see if you have your reaction, then take your insulin to get your blood sugar down.


To be honest, I wasn't being specific in terms the variant of food intolerance/sensitivity that might be in play here, although gluten is way more common that we often consider (until we talk to others about it).

I had no apparent gut issues before going GF.  I went GF as a result of seeing an Endo about something else.  When he did mine and my family's medical history he asked which of the autoimmune conditions I had reeled off I had.  My answer was none.

Having scoffed at my response I left his consulting room with a list of about 40 (literally) blood tests to be done, covering all manner of nasties, but his bets were on coeliac and Hashimoto's Disease, with a potential for Rhuematoid Arthritis thrown in for (not so) good measure.  

Nope.  Not me!

It had been agreed I would not likely test Coeliac positive because I was already eating a low carb lifestyle, and he did not recommend I carbed up prior to the test.  I declined a diagnostic colonoscopy as I felt there was nothing amiss in that region.  (A colonoscopy is the secondary Coeliac diagnostic tool.)  

The Endo did however suggest I adopt a gluten-free lifestyle as "people with AI conditions do well on it".  I have no AI, but he seemed certain, so I gave it a whirl.  I was warned that the trial should be 6 months of strict adherence.

Some months into that trial I inadvertently ate gluten and got the symptoms described.  Clearly, my body had been fighting the intolerance for a while and had relaxed its defences when I was eating none.  Just for completeness, I still don't think I have coeliac disease, but my body sure as heck can't handle gluten well at all.

Please don't reject the potential for food intolerances, bearing in mind your symptoms do relate to eating.  I'm certainly not suggesting you stop trying to try other insulins, but asking that you keep a really open mind.

In your shoes, I'd continue requesting other insulins, and if/when challenged, ask the medic to explain why they are declining, then do your own reading to understand if it's a reasonable challenge, and if so, that allows you to move onto another insulin, or another tack.

Bearing in mind how long it takes us to rib our systems of gluten, I would go back to living gluten free, and pledge to give it 3 months absolute, absolute minimum.  Unfortunately, unlike many intolerances, such as lactose, reducing, or cutting down isn't enough.  It has to be strictly zero.

Whilst I am usually a strong advocate of making one change at a time, bearing in mind the length of the gluten-free trial, I would accept looking at both potentials together.

Finally, if you are not already, I would suggest you keep a very, very details food and drink diary.  That would include what you eat at every meal - absolutely everything, how much insulin you used to deal with it, when you injected (pre-bolus, split bolus or whatever), what your blood glucose looked like before eating/injecting, and after eating.  Additionally, how you felt afterwards.  If you feel bad afterwards, note how long after eating and score how bad you feel on a 0-10.   0 being no issues or symptoms to 10 being being bedbound, seeking medical assistance.

Using that, you may see some trends emerging.  It is a total pain to be working at that level of granularity, but you will build up a lot of data which may not at first inform you of anything, but could be the key to all of this.

Sometimes when we *know* what's wrong it's hard to open our minds to other options, but sometimes we have to change course a bit, when we are travelling down repeated dead-end alleyways.

I do hope you get to the bottom of it all.


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## Amity Island (Jan 8, 2021)

Whitney Queen said:


> I don’t have any of the digestion issues which are apparently common with coeliac, however, if no antibodies are being found how would they ever find out? I was thinking about ringing up the gp in regards to allergy testing do you think gluten can be tested for? Thanks!


Hi Whitney Queen,

Did you try my suggestion of eating a smaller meal without taking any insulin? What happened?


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## Whitney (Jan 11, 2021)

Amity Island said:


> Hi Whitney Queen,
> 
> Did you try my suggestion of eating a smaller meal without taking any insulin? What happened?


Not yet! I will try tomorrow once I wake up


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## Amity Island (Jan 11, 2021)

Whitney Queen said:


> Not yet! I will try tomorrow once I wake up


Great! Either way, it should tell you something. I've got my fingers crossed for you...


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## everydayupsanddowns (Jan 11, 2021)

It will be really interesting to see what happens @Whitney Queen - and could lead you to a series of further experiments based on whether or not you get the tiredness symptoms. Let us know how you get on


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## Inka (Jan 19, 2021)

Hi @Whitney Queen Hope you’re feeling ok. 

Did you get a chance to do @Amity Island ’s experiment yet? It would give useful evidence and build a better picture of what the problem is.


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## Whitney (Jan 19, 2021)

Inka said:


> Hi @Whitney Queen Hope you’re feeling ok.
> 
> Did you get a chance to do @Amity Island ’s experiment yet? It would give useful evidence and build a better picture of what the problem is.


Hello! Yes I did! I tried it with eggs, sausage, black pudding, potato scone, square sausage and baked beans. Within about twenty mins of eating I got the feeling of needing to stretch my entire body / yawning I usually get. It wasn’t the worst I’ve experienced but still not ideal.


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## AndBreathe (Jan 19, 2021)

Whitney Queen said:


> Hello! Yes I did! I tried it with eggs, sausage, black pudding, potato scone, square sausage and baked beans. Within about twenty mins of eating I got the feeling of needing to stretch my entire body / yawning I usually get. It wasn’t the worst I’ve experienced but still not ideal.



How many grams of carb do you reckon was in your meal you describe above?   I'm not sure how close that comes to @Amity Island 's suggestion of about 20gr carb?


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## Whitney (Jan 19, 2021)

AndBreathe said:


> How many grams of carb do you reckon was in your meal you describe above?   I'm not sure how close that comes to @Amity Island 's suggestion of about 20gr carb?


Hello! Yes it’s probably slightly over! The beans were about a quarter of a tin so probably around 12g, the potato scone 12g, the black pudding around 10g as well the square sausage with about the same! So probably all in all about 40g, made me feel weaker as time went on then about an hour in I injected and still felt unwell weak legs and arms.


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## Inka (Jan 19, 2021)

Whitney Queen said:


> Hello! Yes I did! I tried it with eggs, sausage, black pudding, potato scone, square sausage and baked beans. Within about twenty mins of eating I got the feeling of needing to stretch my entire body / yawning I usually get. It wasn’t the worst I’ve experienced but still not ideal.



Have you ever kept a diary of your reactions? I don’t mean anything complicated - just simple eg day, time, what you ate/injected, and a ‘score’ for your reaction plus Notes of anything special or noticeable, e.g “lips really swelled this time”, or “had to go to bed for an hour’s nap”, etc etc.

I had an unresolved medical problem (nothing to do with diabetes) and my diary allowed me to identify it as related to hormones, and to see how it gradually improved with treatment. So it’s something I’d recommend. You could even score each individual symptom or the major ones at least. 

I think it will take a little detective work and more experimentation to work out what’s causing this, but I do think you’ll work it out.


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## Amity Island (Jan 19, 2021)

Whitney Queen said:


> Hello! Yes it’s probably slightly over! The beans were about a quarter of a tin so probably around 12g, the potato scone 12g, the black pudding around 10g as well the square sausage with about the same! So probably all in all about 40g, made me feel weaker as time went on then about an hour in I injected and still felt unwell weak legs and arms.


Hi Whitney,

What's your feeling on it (your experiment)? Do you think it's something you are eating that's making you unwell? If you decide to give it another try, personally, I would limit it to no more than 20g of carbs, because if 10g gives a rise in blood sugar of say 3mmol, 20g would give a rise of 6mmol, which would be a more manageable target (11mmol) to correct afterwards, provided blood sugars are around 5mmol when started. OR you could try and walk the blood sugar off? and not have to take any insulin at all for that meal?

If it is the food that is causing you to feel unwell, @Inka mentioned about a food diary, eliminating different foods etc


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## Whitney (Jan 20, 2021)

Inka said:


> Have you ever kept a diary of your reactions? I don’t mean anything complicated - just simple eg day, time, what you ate/injected, and a ‘score’ for your reaction plus Notes of anything special or noticeable, e.g “lips really swelled this time”, or “had to go to bed for an hour’s nap”, etc etc.
> 
> I had an unresolved medical problem (nothing to do with diabetes) and my diary allowed me to identify it as related to hormones, and to see how it gradually improved with treatment. So it’s something I’d recommend. You could even score each individual symptom or the major ones at least.
> 
> I think it will take a little detective work and more experimentation to work out what’s causing this, but I do think you’ll work it out.


I’ve started taking a diary of my blood sugars exactly what I’m eating, carb content and symptoms! So far I’ve seen sausages, Yorkshire puddings, mashed root veg and cheesy broccolli forced me to have a nap for an hour or more. I’ve had melon, yogurt and banana muffins to cause me to nap for several hours and now the stuff from the experiment which caused me to have weak arms and legs! Some days in the diary I haven’t had as bad symptoms these 3 are just the major days, I’m going to try continue it for a while and see what they all have in common. Fingers crossed! I had to apply for personal independence payment today as I can’t even imagine working full time feeling this way!


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## AndBreathe (Jan 20, 2021)

Whitney Queen said:


> I’ve started taking a diary of my blood sugars exactly what I’m eating, carb content and symptoms! So far I’ve seen sausages, Yorkshire puddings, mashed root veg and cheesy broccolli forced me to have a nap for an hour or more. I’ve had melon, yogurt and banana muffins to cause me to nap for several hours and now the stuff from the experiment which caused me to have weak arms and legs! Some days in the diary I haven’t had as bad symptoms these 3 are just the major days, I’m going to try continue it for a while and see what they all have in common. Fingers crossed! I had to apply for personal independence payment today as I can’t even imagine working full time feeling this way!



What were your bloods like a couple of hours after eating the stuff that made you feel lethargic?


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## AJLang (Jan 20, 2021)

Have you had a look at Idiopathic postgraduate syndrome? The symptoms of a hypo after eating without the low sugar. As previously suggested it could be a good idea to try small low carb meals and see your reaction. By low carb I would say 10-20 carbs maximum or preferably no carbs at also eg cheese, ham and mushroom omelette.
​


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## Robin (Jan 20, 2021)

AJLang said:


> Idiopathic postgraduate syndrome


Idiopathic postprandial syndrome, I assume. I love autocorrect!


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## Inka (Jan 20, 2021)

Whitney Queen said:


> I’ve started taking a diary of my blood sugars exactly what I’m eating, carb content and symptoms! So far I’ve seen sausages, Yorkshire puddings, mashed root veg and cheesy broccolli forced me to have a nap for an hour or more. I’ve had melon, yogurt and banana muffins to cause me to nap for several hours and now the stuff from the experiment which caused me to have weak arms and legs! Some days in the diary I haven’t had as bad symptoms these 3 are just the major days, I’m going to try continue it for a while and see what they all have in common. Fingers crossed! I had to apply for personal independence payment today as I can’t even imagine working full time feeling this way!



That’s good   That’s a fair variety of food there.Pre-bolusing was discussed before to stop any big spike, so I know you’re aware of that. Also, when you didn’t take insulin for your recent test meal, you would have spiked higher obviously but you said your symptoms weren’t at the top end of bad, which suggests it’s not spikes affecting you.

I agree with your thoughts that it’s less likely to be the foods because your symptoms started pretty much when you were diagnosed.

It’s so sad that you’re being so affected that you’ve had to apply for PIP.

Just some random things off the top of my head - are you taking a good quality multivitamin and mineral preferably with probiotics every day? Are you taking Vit D? I know what you’re feeling is more than ‘run down’ but every little thing might help you. Have you tried cutting out most processed foods in case additives make things worse? Are you getting any other symptoms that you’ve presumed to be unrelated but that might be, eg eczema, fungal infections, rashes, etc etc.

You know I think a trial of animal insulin would be a good move. I still think that. The symptoms of intolerance of human/analogues build up and affect your body. That makes it more difficult to spot because the effects aren’t always so obviously related. A trial of animal insulin gives time for your body to ‘clear itself’ and would be conclusive - that is, you’d either feel a lot better or it would have no effect.


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## Whitney (Jan 20, 2021)

AndBreathe said:


> What were your bloods like a couple of hours after eating the stuff that made you feel lethargic?


In terms of the sausage Yorkshire pudding, brocolli cheese and root veg meal my bloods were at 11.6 before then within an hour were at 6.0. In terms of the melon, yogurt and muffin my bloods were at 8.6 before (I pre bolused too much and my bloods dropped to 3.9) then they went up to 10.1. In terms of the experiment without insulin with the fry up my bloods were at 8.6 before and then went up to 14 before injecting insulin bringing it back down to 9.


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## AndBreathe (Jan 20, 2021)

Whitney Queen said:


> In terms of the sausage Yorkshire pudding, brocolli cheese and root veg meal my bloods were at 11.6 before then within an hour were at 6.0. In terms of the melon, yogurt and muffin my bloods were at 8.6 before (I pre bolused too much and my bloods dropped to 3.9) then they went up to 10.1. In terms of the experiment without insulin with the fry up my bloods were at 8.6 before and then went up to 14 before injecting insulin bringing it back down to 9.



On the sausage, Yorkshire pud etc., meal, do you know what you peaked at as a high?  What was your breakfast, or last meal before the sausage, Yorkie etc., meal?  Of if that was your breakfast, and therefore fasted, what was your blood at when you got out of bed? 

I'm not an insulin user to bear that in mind when I make a comment, but have you considered eating a zero carb meal?

Have you recently done any basal testing, to ensure your basal is holding you level?


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## Inka (Jan 20, 2021)

Protein and eventually fat too will cause a blood sugar rise. I wouldn’t recommend going without insulin like that as a Type 1.


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## AJLang (Jan 20, 2021)

Robin said:


> Idiopathic postprandial syndrome, I assume. I love autocorrect!


Sorry yep you’re right. Stupid autocorrect


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## Whitney (Jan 20, 2021)

Amity Island said:


> Whitney,
> How about calling diabetes uk? They might be willing to contact your g.p or consultant about giving you the benefit of doubt and allowing you to swap both your basal and bolus insulins.


Yeah! I’ve been thinking of calling them! I may actually do it tomorrow! I just had the same meal I had with the experiment the fry up and I have the exact same symptoms this time with the insulin as I did without it, this time my throat is as dry as anything and my bloods have only gone up to 9.9 at the moment! (


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## Whitney (Jan 20, 2021)

AndBreathe said:


> On the sausage, Yorkshire pud etc., meal, do you know what you peaked at as a high?  What was your breakfast, or last meal before the sausage, Yorkie etc., meal?  Of if that was your breakfast, and therefore fasted, what was your blood at when you got out of bed?
> 
> I'm not an insulin user to bear that in mind when I make a comment, but have you considered eating a zero carb meal?
> 
> Have you recently done any basal testing, to ensure your basal is holding you level?


With the sausage/ Yorkshire puddings meal I started at 11.6 then it went down to 6.0 then it was going down fast as it was at like 9 one minute then 6 the next so I panicked and had some skittles and then stayed at about 9 for a bit then it went up to 14 a few hours after and I had to correct.


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## Whitney (Jan 20, 2021)

AndBreathe said:


> On the sausage, Yorkshire pud etc., meal, do you know what you peaked at as a high?  What was your breakfast, or last meal before the sausage, Yorkie etc., meal?  Of if that was your breakfast, and therefore fasted, what was your blood at when you got out of bed?
> 
> I'm not an insulin user to bear that in mind when I make a comment, but have you considered eating a zero carb meal?
> 
> Have you recently done any basal testing, to ensure your basal is holding you level?


I’ve upped my basal a unit recently as I was waking up at 8 all the time and now I’ve upped it a unit I’m now waking up in the 5s which I believe is much better! So I don’t think raising that would be a good idea? I’m on tresiba! Because of my symptoms I regularly starve myself all day and my bloods stay stable and don’t really raise or lower so I think that means it’s ok? however I do have weird spikes sometimes which can happen like 5 hours after a big meal?


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## Whitney (Jan 20, 2021)

Thanks everyone for your support and advice so far! It means a lot as I don’t really have a very good support system! I was diagnosed just a few weeks before moving to university and kinda missed out on all the beginners advice and training on diabetes as my new team didn’t give me an appointment for a year. Im only 22 and I don’t have any parents (orphan) or extended family like aunts and uncles etc either so it’s been hard dealing with it all on my own! Especially with such debilitating symptoms! I appreciate every reply even if I can’t respond to them all


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## everydayupsanddowns (Jan 21, 2021)

I am really interested to hear that your tiredness is still being triggered even without taking the insulin @Whitney Queen 

Does that make you feel it is more food related? Are you still interested in trying a switch to animal insulin, or are you more interested in trying to identify possible food triggers at this stage?


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## Inka (Jan 21, 2021)

Yes, and an appropriate change of insulins should give an answer very quickly - even if that answer is ruling out the insulin as a cause. 

The symptoms of crushing fatigue and brain fog match human/analogue intolerance very well. If it’s not the insulins, then that’s a big thing ruled out. If it _is_ the insulins, then that would be amazing as it’s not an illness and is easily sorted.


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## everydayupsanddowns (Jan 21, 2021)

Amity Island said:


> Hi Mike,
> 
> Although even without a bolus, basal is still being taken, so it could still be possibly insulin related. It's a difficult situation to be in.



That’s true, but the tiredness seemed to be quite acute around food, rather that general or random lethargy.

You are absolutely right, it’s an absolutely horrible situation for @Whitney Queen - and I guess it’s worth trying anything, but the tiredness, triggered by eating food (with or without bolus insulin) didn’t feel so obviously insulin-related to me I guess?


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## Whitney (Jan 21, 2021)

Hello everyone! I have good news and bad news, bad news is I asked my diabetic team if they knew how to push for allergy / intolerance testing and they ignored my question. Good news is that they’ve referred me to the pump team and that they’re going to get in touch with me. (Doesn’t mean I’ll get one though as I don’t believe I meet the requirements as my hba1c is fine, probably because I have to
Not eat!)


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## AndBreathe (Jan 22, 2021)

Whitney Queen said:


> Hello everyone! I have good news and bad news, bad news is I asked my diabetic team if they knew how to push for allergy / intolerance testing and they ignored my question. Good news is that they’ve referred me to the pump team and that they’re going to get in touch with me. (Doesn’t mean I’ll get one though as I don’t believe I meet the requirements as my hba1c is fine, probably because I have to
> Not eat!)



The tough reality is intolerance/allergy testing can be done with multiple testing, but to be honest, the best way to really get to the bottom of what your body is doing is to do in depth food diaries, matched with symptoms, and in your case, insulin doses and regime (whether you pre-bolus or multi-bolus, for say fast acting or slower acting foodstuffs, respectively), and your blood scores.

Personally, I could be very wrong, but were I in your shoes, I'd be focusing on what my food.  I'm not saying you're totally wrong with your insulins, because I can't possibly know.  I can only say what I would do, if faced with your chanllenges.

Personally, I would go back to gluten first, and cut it out - right out - for at least 3-6 months.  For someone whose body can't cope too well with gluten, it can take a while to heal from the sometimes daily challenges it faces - hence the need to go that a real go.  Unfortunately, gluten has to be all out.  Cutting down isn't that answer, unlike other intolerances, such as dairy, or in my case tomatoes.  I can manage small amounts of tomatoes, but more than that and I suffer - and, oh how I love tomatoes!

As I understand things, keeping a food, insulin and bloods diary will stand you in very good stead for both your pump discussions, and if you are also changing insulin.

I know it's a chore and a total boar, but data is empowering.  Data can show you trends, and trends of an unwanted nature can be tackled based on _*your*_ data, not anyone else's but yours.

I'm sure it is no consolation to you whatsoever, but the Endo I see recommends patients with auto0immune conditions, facing issues, go gluten-free, because of the often low grade, but very debilitating symptoms that can develop over time.

Maybe he's a bit "odd", but he is the guy in our area who gets all the "odd-bods" and atypical individuals.  Sadly, I have to include myself in that grouping, probably justifiably!

Good luck with it all.  Feeling unwell or "off" for a long time is just pretty rubbish.


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## Inka (Jan 22, 2021)

Whitney Queen said:


> Hello everyone! I have good news and bad news, bad news is I asked my diabetic team if they knew how to push for allergy / intolerance testing and they ignored my question. Good news is that they’ve referred me to the pump team and that they’re going to get in touch with me. (Doesn’t mean I’ll get one though as I don’t believe I meet the requirements as my hba1c is fine, probably because I have to
> Not eat!)



Presumably they referred you to the pump team in case it was the Tresiba that was the issue?

Your GP would be the one to talk to about possible allergies or intolerances. Please avoid any tests you can buy online - there’s no proof they work at all and the NHS advises you avoid them. Also, avoid the kind of ‘clean living’ forums that are populated by people with eating disorders. Be very aware that although some people do have genuine food intolerances, a surprising number of people don’t and ‘avoiding gluten or wheat’ is in and of itself a sign of disordered eating. Your best bet is to get the help of a proper dietician.

It would be a massive coincidence if you developed food intolerances at the same time as you were diagnosed with Type 1. Apart from the insulin and food issues, there are a number of other things it could be epso keeping in touch with your GP is best. I think you said they weren’t very sympathetic before but you can change GP.

I stress again - you sadly need to be active and a bit pushy to get answers. 

Did you get a copy of all the blood tests you’ve had done? That’s important. Often when they say they’ve “done all the tests” they only mean they’ve done some basic tests. As I think I said, a relative suffered for months and was referred to a specialist because her GP had “done all the tests”. Except they hadn’t - and the answer was actually very simple. So - wasted months when it could have been sorted.

I hope you’re not feeling too bad today.


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## Whitney (Jan 22, 2021)

Inka said:


> Presumably they referred you to the pump team in case it was the Tresiba that was the issue?
> 
> Your GP would be the one to talk to about possible allergies or intolerances. Please avoid any tests you can buy online - there’s no proof they work at all and the NHS advises you avoid them. Also, avoid the kind of ‘clean living’ forums that are populated by people with eating disorders. Be very aware that although some people do have genuine food intolerances, a surprising number of people don’t and ‘avoiding gluten or wheat’ is in and of itself a sign of disordered eating. Your best bet is to get the help of a proper dietician.
> 
> ...


Nah they referred me to them as I asked whether I’m just extremely sensitive to my blood sugar changing. I was just on the phone to the gp they booked me some bloods for milk, eggs and gluten on Monday however she was saying she can’t do anything again and to be honest I’m now thinking either this is going to end up killing me due to it keeps getting worse, (now when Im forced to nap i can feel my heart beating faster, it feels like i cant move and my throat dries and crisps up) or I’ll end up killing myself I can’t cope anymore and I feel like none of the professionals care about it or care to figure out what it is just because no other diabetics feel this way. Got off the phone from the gp feeling worse than before calling them!


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## Rosi (Jan 22, 2021)

Whitney Queen said:


> hello, I’ve posted a few times now over the years about this same problem which has never got figured out and is getting worse, I am officially at breaking point with my diabetes. Everytime I eat I get sore eyes (which are visibly puffy and red) headaches, overwhelming fatigue, constant yawning, the feeling of needing to stretch my entire body, muscle cramps, extreme brain fog and not being able to concentrate and being extremely forgetful. The only way I can avoid this is to not eat and therefore I starve myself all day until dinner time at about 8pm. I can’t get a job because if I had a job which started at 9 if I ate breakfast I would be knocked out and unable to work. I have been to both my diabetic team and my GP and none of them care anymore now that they’ve eliminated all the obvious things such as coeliac disease, thyroid problems etc. The problem started AS SOON as I got home from the hospital 4 years ago with my type 1 diagnosis and therefore I still believe it’s something to do with diabetes but the diabetic team do not think it is. I constantly contemplate taking my own life If this problem does not go away soon as it genuinely is debilitating and I can’t take much more of this, I’ve been asking for 4 years now and I am no closer to finding out what the problem is and I spend all my time crying and feeling angry. If anyone has any advice or has had similar symptoms please let me know.


Hi! Sorry to know that you are not well. Just to let you know my personal experience. I had very high sugar 13.5 hba1c and I was advised by my Doctor and specialists to change my diet to very low carbs. I took that diet and became worse. I could not even walk or do the house work. Even my sugar was not reducing much. 
I tried keto diet and other diets but results were even worse. That I found one diet which is mastering diebeties. 
In which eat as much carbs you want but to avoid very oily stuff and eat all fruits, just avoid procedsed fruits. Since started that the results are amaising.
I eat rice, chapati, potatoes, all starch vegetables and fruits. Sugar level came dramatically down in just less than 2 months now my sugar levels from 13.5 to 7.5 just in two months.
I never starve myself. I feel each day more energetic and happy. I don't eat anything processed of the market. Even the juice I take out in the house to avoid added sugar. I hope it would help.


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## Whitney (Jan 22, 2021)

Rosi said:


> Hi! Sorry to know that you are not well. Just to let you know my personal experience. I had very high sugar 13.5 hba1c and I was advised by my Doctor and specialists to change my diet to very low carbs. I took that diet and became worse. I could not even walk or do the house work. Even my sugar was not reducing much.
> I tried keto diet and other diets but results were even worse. That I found one diet which is mastering diebeties.
> In which eat as much carbs you want but to avoid very oily stuff and eat all fruits, just avoid procedsed fruits. Since started that the results are amaising.
> I eat rice, chapati, potatoes, all starch vegetables and fruits. Sugar level came dramatically down in just less than 2 months now my sugar levels from 13.5 to 7.5 just in two months.
> I never starve myself. I feel each day more energetic and happy. I don't eat anything processed of the market. Even the juice I take out in the house to avoid added sugar. I hope it would help.


I have only ever eaten normally and I still get the symptoms  much like you I can’t do simple tasks either, such as house work as I feel so weak! glad you’re feeling better though


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## Inka (Jan 22, 2021)

Whitney Queen said:


> Nah they referred me to them as I asked whether I’m just extremely sensitive to my blood sugar changing. I was just on the phone to the gp they booked me some bloods for milk, eggs and gluten on Monday however she was saying she can’t do anything again and to be honest I’m now thinking either this is going to end up killing me due to it keeps getting worse, (now when Im forced to nap i can feel my heart beating faster, it feels like i cant move and my throat dries and crisps up) or I’ll end up killing myself I can’t cope anymore and I feel like none of the professionals care about it or care to figure out what it is just because no other diabetics feel this way. Got off the phone from the gp feeling worse than before calling them!



Ah, ok - well, it’s still good news that you’ve been referred to the pump team. I have a pump and it made me feel normal again - not for psychological reasons, but physical ones. Getting the right amount of basal each hour does help a lot. It might not be the cause of your problems but it could help, and at least you’ll get some information about pumps. Despite what a few medics say, animal insulin *can* be used in pumps so it wouldn’t stop you trying that  

It’s also good news that you’ve got some blood tests booked for Monday - that’s very quick. I know it’s only a few but they’re very common allergens and, as I said, every little thing helps you get closer to the answer.

Did you mention your heart beating faster to the GP? There are lots of causes for that, some as simple as a vitamin deficiency. So that could be sorted out too.

The answer *is* out there. You will feel better. I know it must be horrible to feel so bad, but I really do honestly think this can be sorted. I wouldn’t say that to you if I didn’t believe it. 

You can always post here if you’re feeling bad or down. There are always people around. Lots of people have replied to you and I’m sure every one of those people and all the others who didn’t reply care that you’re ok and wish you well. You’re young and your life stretches ahead of you. I know things are hard at the moment, but they won’t always be that way. 

Look after yourself - you’re not alone.


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## MrDaibetes (Jan 22, 2021)

Whitney Queen said:


> Nah they referred me to them as I asked whether I’m just extremely sensitive to my blood sugar changing. I was just on the phone to the gp they booked me some bloods for milk, eggs and gluten on Monday however she was saying she can’t do anything again and to be honest I’m now thinking either this is going to end up killing me due to it keeps getting worse, (now when Im forced to nap i can feel my heart beating faster, it feels like i cant move and my throat dries and crisps up) or I’ll end up killing myself I can’t cope anymore and I feel like none of the professionals care about it or care to figure out what it is just because no other diabetics feel this way. Got off the phone from the gp feeling worse than before calling them!


So sorry you are feeling like this, have you rung samaritans on 116 123, they will help you get through this horrible time and you will feel better if you speak to someone. My inbox is open if you want a chat too. Stay safe


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## Whitney (Jan 24, 2021)

Hello everyone, I’m thinking of doing another experiment, I’m thinking of going very low carb for a few days to see if I get the symptoms. I’ve never done this and can feel the diabetic team getting annoyed at me so I don’t really want to bother them again but I’m wondering if I need to keep my background insulin the same or whether I’d need to lower it if I’m going very low carb for a few days? Was thinking maybe 5 days for the experiment. I don’t really understand background insulin as I was never really taught about it, I usually go to bed with my bloods at about 10 and they get brought down to 5 overnight by my background I believe? However, if I go to bed at 5 already does that mean I will hypo? I don’t really understand how it works and if I do low carb I’ll be trying not to go over 9/10 for the experiment. Thanks! Hope you’S are all well


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## MrDaibetes (Jan 25, 2021)

Whitney Queen said:


> Hello everyone, I’m thinking of doing another experiment, I’m thinking of going very low carb for a few days to see if I get the symptoms. I’ve never done this and can feel the diabetic team getting annoyed at me so I don’t really want to bother them again but I’m wondering if I need to keep my background insulin the same or whether I’d need to lower it if I’m going very low carb for a few days? Was thinking maybe 5 days for the experiment. I don’t really understand background insulin as I was never really taught about it, I usually go to bed with my bloods at about 10 and they get brought down to 5 overnight by my background I believe? However, if I go to bed at 5 already does that mean I will hypo? I don’t really understand how it works and if I do low carb I’ll be trying not to go over 9/10 for the experiment. Thanks! Hope you’S are all well


I understand you don't want to speak to your team but for insulin advice, I would speak to your team. Good luck and let us know how you get on, lots of people find success in managing glucose levels with low carb.


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## everydayupsanddowns (Jan 25, 2021)

Whitney Queen said:


> Hello everyone, I’m thinking of doing another experiment, I’m thinking of going very low carb for a few days to see if I get the symptoms. I’ve never done this and can feel the diabetic team getting annoyed at me so I don’t really want to bother them again but I’m wondering if I need to keep my background insulin the same or whether I’d need to lower it if I’m going very low carb for a few days? Was thinking maybe 5 days for the experiment. I don’t really understand background insulin as I was never really taught about it, I usually go to bed with my bloods at about 10 and they get brought down to 5 overnight by my background I believe? However, if I go to bed at 5 already does that mean I will hypo? I don’t really understand how it works and if I do low carb I’ll be trying not to go over 9/10 for the experiment. Thanks! Hope you’S are all well



You will need to keep taking your basal insulin, but it sounds like yours may not be set correctly?

Your background insulin should be set to hold your BG as steady as possible during the whole 24hrs, when you aren’t eating and you don’t have any fast acting (bolus) insulin working.

Ideally overnight and any time you skip a meal your basal shoukd hold your BG steady, not rising or falling by more than 1.7mmol/L

There’s a good write up of basal, and how to check and adjust it here





						diabetes-support.org.uk
					

This domain may be for sale!



					www.diabetes-support.org.uk
				




If your BG drops by 5 every night it sounds like you have a little too much basal active

As @MrDaibetes says, do keep in touch with your team and lean on them for advice and support. Keep those lines of communication open


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## Inka (Jan 25, 2021)

Hi @Whitney Queen I think your basal is maybe a little high too. I understand you not wanting to speak to your team, but this is something fairly simple they could help with. You’re not bothering them - that’s their job.

I found low carb tedious because it just moves any issues to a different place. There’s a lot of rubbish about it online and it’s not a magic answer. For Type 1s the magic answer is insulin and using it correctly. What is useful though is a healthy diet, just like it would be for anyone else, a reasonable routine, and a good understanding of how insulin works. There are enough people with diabetes and an eating disorder, and they’re particularly prevalent on the low carb sites. This forum isn’t immune from them either. If you feel your control needs tightening, then that’s to do with your insulin not ‘bad’ foods. Most people with Type 1 eat a reasonable amount of carbs. A half-unit pen is always useful to have for your bolus insulin as you can then do more accurate corrections when needed. 

I can’t remember if you said you’d done a DAFNE course but there’s an online version if you haven’t.

Is it your blood tests today? Good luck if it is : )


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## Whitney (Jan 25, 2021)

Inka said:


> Hi @Whitney Queen I think your basal is maybe a little high too. I understand you not wanting to speak to your team, but this is something fairly simple they could help with. You’re not bothering them - that’s their job.
> 
> I found low carb tedious because it just moves any issues to a different place. There’s a lot of rubbish about it online and it’s not a magic answer. For Type 1s the magic answer is insulin and using it correctly. What is useful though is a healthy diet, just like it would be for anyone else, a reasonable routine, and a good understanding of how insulin works. There are enough people with diabetes and an eating disorder, and they’re particularly prevalent on the low carb sites. This forum isn’t immune from them either. If you feel your control needs tightening, then that’s to do with your insulin not ‘bad’ foods. Most people with Type 1 eat a reasonable amount of carbs. A half-unit pen is always useful to have for your bolus insulin as you can then do more accurate corrections when needed.
> 
> ...


Yeah I’m not planning on going low carb forever, only for a day or two to see if I get the same symptoms! I’m still injecting one or two units per meal as there will obviously be some! I think this way it will determine if it’s the blood sugars going up and down or not that’s causing my tiredness, sore eyes, headaches etc. I will record my symptoms etc in my notebook and see if there’s any patterns!

Yes it was my bloods today they’ve been taken and they said the results should be back in about a week. They’re testing me for coeliac disease again, dairy and eggs


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## Inka (Jan 25, 2021)

That’s good that they repeated  the coeliac test too. You’re gradually getting the information that will help you get to an answer. Every tiny piece helps


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## EllsBells (Jan 25, 2021)

Whitney Queen said:


> I’ve started taking a diary of my blood sugars exactly what I’m eating, carb content and symptoms! So far I’ve seen sausages, Yorkshire puddings, mashed root veg and cheesy broccolli forced me to have a nap for an hour or more. I’ve had melon, yogurt and banana muffins to cause me to nap for several hours and now the stuff from the experiment which caused me to have weak arms and legs! Some days in the diary I haven’t had as bad symptoms these 3 are just the major days, I’m going to try continue it for a while and see what they all have in common. Fingers crossed! I had to apply for personal independence payment today as I can’t even imagine working full time feeling this way!


Another thing to consider is Glycaemic load (GL) - I'm VERY new to this but bananas, melons and root veg have quite high GI/GL compared to some other veg so they convert into sugars much more quickly - I'm currently avoiding them for that reason. The other thing is that yorkshire puddings and muffins both contain wheat - was the cheesy sauce for the broccoli based on a bechamel sauce? That too would have wheat in it. Some types of sausages are also padded out with grains and carbs unless you get the fancy ones (eg Sainsbury's Taste the Difference or from a butcher). Baked beans come with a sugar packed sauce. The black pudding might contain oatmeal (for some, it's as bad as wheat) and your potato scones are also a root vegetable and probably using a higher GL type like a carbtastic king edwards or maris piper.

I'm wondering whether you have a double whammy of easily converted natural sugars together with wheat/grain products in each of these cases.

Edited to add that I hope you resolve it and feel much better soon!


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