Frustrated and floundering

[MrsHavisham]

So, I had the dreaded HBAlC today which after months of creeping higher, hit the 50 mark so I am offically diabetic and have been told to take metformin 500mg twice a day. But how to manage this (type ii diabetes)? I am already on a really restricted diet (gluten free, dairy free, low histamine, low salicylates) but put on weight regardless (probably due to forced inactivity and medication). This leaves me with already very little to eat and very little variety, so the suggestions given for diet are inappropriate for me. I was referred to a dietician who didn't understand my disease (Mast Cell Activation Syndrome/MCAS) which forces me to restrict my diet, so I am left to my own devices. Neither can I exercise due to the MCAS and also to a neurological disorder. If anyone has any idea of how I can help myself, please let me know?

 

[AndBreathe]

So, I had the dreaded HBAlC today which after months of creeping higher, hit the 50 mark so I am offically diabetic and have been told to take metformin 500mg twice a day. But how to manage this (type ii diabetes)? I am already on a really restricted diet (gluten free, dairy free, low histamine, low salicylates) but put on weight regardless (probably due to forced inactivity and medication). This leaves me with already very little to eat and very little variety, so the suggestions given for diet are inappropriate for me. I was referred to a dietician who didn't understand my disease (Mast Cell Activation Syndrome/MCAS) which forces me to restrict my diet, so I am left to my own devices. Neither can I exercise due to the MCAS and also to a neurological disorder. If anyone has any idea of how I can help myself, please let me know?

Hello there Mrs Havisham. I have a friend with T2 and MCAS. It's not easy, but she has done incredibly well over the years.

 

[Drummer]

The basis of my diet is fish and meat, plus salads and low carb veges - is that not an option for you?

 

[MrsHavisham]

Unfortunately, no fish, shellfish, legumes, peppers/chillies, all citrus, grapes, aubergines, spices, vinegars, yeasts, hung meats (including beef), no bacon and similar products and 1001 other things - or risk of anaphylaxis. Leaves me with chicken and pork, pak choi, sweetcorn, carrot, lettuce and peeled cucumber, and potato and some herbs. I can't even have salad dressing.

 

[MrsHavisham]

Hello there Mrs Havisham. I have a friend with T2 and MCAS. It's not easy, but she has done incredibly well over the years.

I'd love to know how your friend manages with her diet. The trouble is that no two MCAS patients have the same intolerances or reactions.

 

[AndBreathe]

I'd love to know how your friend manages with her diet. The trouble is that no two MCAS patients have the same intolerances or reactions.

I have sent her a message to let her know I encountered you, but I don't know if she uses this site. Hopefully she will drop in, as I know she is also involved in something for MCAS

 

[everydayupsanddowns]

Unfortunately, no fish, shellfish, legumes, peppers/chillies, all citrus, grapes, aubergines, spices, vinegars, yeasts, hung meats (including beef), no bacon and similar products and 1001 other things - or risk of anaphylaxis. Leaves me with chicken and pork, pak choi, sweetcorn, carrot, lettuce and peeled cucumber, and potato and some herbs. I can't even have salad dressing.

I don’t know anything about MCAS I’m afraid, but it sounds very challenging - sorry you’ve now got T2 added into the mix

How about eggs? Many T2s here find those very useful.

Or berries for fruit?

Dairy? Cheese or yoghurt?

On your ‘can eat’ just the things which would have most impact on your blood glucose levels are the potatoes and sweet corn. Apart from that it looks very diabetes-friendly

 

[Docb]

A couple of thoughts which might not be relevant because I know nothing about MCAS.

First is that you are only just diabetic and this means there is no need to panic and you can take a measured approach to making sure your HBA1C does not go up. The metformin might do the trick, only time will tell, and if it does then you can focus on your diet only to deal with the MCAS.

Second, you could write a list of all the things you can eat and look up the carb content for them. You can then focus on the high carb items to see what you can do to reduce them either by modifying portion sizes, modifying recipies or replacing them with something else.

 

[MrsHavisham]

I don’t know anything about MCAS I’m afraid, but it sounds very challenging - sorry you’ve now got T2 added into the mix

How about eggs? Many T2s here find those very useful.

Or berries for fruit?

Dairy? Cheese or yoghurt?

On your ‘can eat’ just the things which would have most impact on your blood glucose levels are the potatoes and sweet corn. Apart from that it looks very diabetes-friendly

I can eat only duck eggs, some fruit (mango, apple, banana). No dairy. I eat very, very few potatoes already and sweetcorn - baby corn, only 2 per serving. I do have GF bread and even that I keep down to a bare minimum - one roll or slice (half the standard size of sliced bread) per day, if that.

 

[MrsHavisham]

A couple of thoughts which might not be relevant because I know nothing about MCAS.

First is that you are only just diabetic and this means there is no need to panic and you can take a measured approach to making sure your HBA1C does not go up. The metformin might do the trick, only time will tell, and if it does then you can focus on your diet only to deal with the MCAS.

Second, you could write a list of all the things you can eat and look up the carb content for them. You can then focus on the high carb items to see what you can do to reduce them either by modifying portion sizes, modifying recipies or replacing them with something else.

Nasty reaction to the metformin so I've stopped that until I see my diabetes nurse at the GP surgery. I will look at the carb issues - thanks for your reply. I don't follow recipes because there are none that cater for such a restricted diet. So I make my own recipes up, and in fact have very few carbs - I hate GF pasta, have very little bread and potatoes and rice only once a week although I am reliant on carrots which I have several times a week, plus the odd parsnip or swede. Most of my diet is a meat-and-three/four-veg sort.

 

[everydayupsanddowns]

The foods which people with type 2 on the forum often have to be careful about are:

Bread, pasta, rice, grains, anything made with flour, fruit and root vegetables.

These are the foods that will generally have the biggest impact on blood glucose levels.

It seems to me that the restrictions your other conditions already require are ensuring that you are eating a low-ish carb diet, so probably the most straightforward thing is to get hold of a blood glucose meter (eg the SD Codefree) and see how your body is responding to what you currently eat, then adjust from there using a test-review-adjust type framework.

There is no ‘one size fits all’ diabetes diet, and this is doubly-so in your case!

 

[MrsHavisham]

That's a really good idea Mike, thanks so much. Will I not be entitled to a blood glucose meter on the NHS or is that only for type 1 or insulin dependents?

 

[everydayupsanddowns]

That's a really good idea Mike, thanks so much. Will I not be entitled to a blood glucose meter on the NHS or is that only for type 1 or insulin dependents?

You should certainly ask, especially given your complex circumstances - as really your care should be individually tailored for you.

Members on the forum with T2 on ‘diet and exercise’ or non-hypoglycaemic meds have mixed experiences, partly because the official national guidance doesn’t recommend self monitoring unless there is a risk of hypos from medication. Which is craziness! Given how effective members here find the information from a monitor in improving their food intake to be more BG friendly!

 

[TheClockworkDodo]

Hello @MrsHavisham and welcome 🙂 - from someone else with a neurological illness, restricted diet, and inability to exercise much. Citrus and spices are among my long avoid list too - citrus is the worst thing for me and it's so difficult to avoid, isn't it? - though in my case there's no risk of anaphylaxis, it just makes me very ill indeed.

Testing your blood sugar to find out which things you can and can't tolerate is a good idea for all diabetics, but it sounds like it will be vital for you. You may find, as I did, that you also have a minor intolerance to a food you're currently eating, and it spikes your blood sugar really high even if it's not carby. I was eating eggs, which are free from carbs and great for most diabetics, and they were sending my blood sugar into the stratosphere every time. I put my insulin dose for them up and up and up, and it made no difference - in the end I had to stop eating them. On the other hand you may find that you are still absolutely fine to eat a small quantity of potatoes. These things are very individual.

So it's definitely worth asking for a meter, and explaining how much it would help you, but if they won't give you one, a lot of people on the forum use this one - and these are the test strips for it.

The other thing is, when you say you can't exercise, do you mean you can't move about at all, or do you mean you can't do something like going to the gym? I certainly couldn't do the latter, but with my intolerance to exercise, I find that quite a small amount of moving about (eg watering a few plants) will lower my blood sugar a lot - so if you can do a bit of pottering about rather than sitting still, you might find that makes a big difference to keeping your diabetes under control. If you are stuck sitting still, even just something like stretching exercises might help.

 

[MrsHavisham]

Juliet, thank you for your reply. Unfortunately I have to wait three weeks to see my diabetes nurse so I think it's worth getting the monitor that you and Mike (Everydayupsanddowns) recommend. No time like the present for getting things done! Particuarly important anyway as I have had to stop the metformin which was giving me intolerable side effects.

Exercise - I can "potter" as long as I have very frequent rests and I have been doing that for years, although, as my fitness wearable monitor shows, I am doing less and less over the years. I am in a state of permanent exhaustion - perhaps the diabetes is partly to blame for that, and even wake up tired. Energy, pain, physical ability and histamine levels, dictate how much I can manage to do in a day.

 

[Drummer]

One thing many type twos make a lot of use of is cauliflower, replacing potato and rice as it is far lower in carbs. If you can eat it, it might be useful - as is cabbage - sliced, dusted with pepper and roasted under a drizzle of olive oil it is surprisingly good.

 

[MrsHavisham]

hi Drummer, sadly I only tolerate cauli in small amounts, but not cabbage, and no pepper and no olive oil (the only oils I tolerate are rice bran oil and coconut oil. This diet really does cause me problems, even without having diabetes on top of it.

 

[TheClockworkDodo]

Juliet, thank you for your reply. Unfortunately I have to wait three weeks to see my diabetes nurse so I think it's worth getting the monitor that you and Mike (Everydayupsanddowns) recommend. No time like the present for getting things done! Particuarly important anyway as I have had to stop the metformin which was giving me intolerable side effects.

Bad side effects with Metformin are quite common, so it's worth asking about alternatives when you do see the nurse - there's a slow release version which people seem to tolerate better, and a couple of other possibilities - including insulin, as a last resort (though I suspect you're a long way from needing that now, with an HbA1c of 50 - that's about what mine tends to be with insulin).

Exercise - I can "potter" as long as I have very frequent rests and I have been doing that for years, although, as my fitness wearable monitor shows, I am doing less and less over the years. I am in a state of permanent exhaustion - perhaps the diabetes is partly to blame for that, and even wake up tired. Energy, pain, physical ability and histamine levels, dictate how much I can manage to do in a day.

I potter with rests too, and have good/bad days, and I also wake up tired - in fact, I tend to wake up feeling awful and gradually feel better as the day goes on. My best time is usually around midnight, which is not a terribly practical time to do things when everyone else wants to be asleep. On the plus side, I do get to see/hear a lot of hedgehogs, bats, and owls ... 🙂