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Surgical Type 1 advice

R

RichWatt

Member
Messages
18
Type of diabetes
Type 1
Hi
I'm newly Type 1 diabetic having just had a total pancreatectomy to remove a cancerous tumour.

I would like to learn how to control my blood sugar and what specific diet to follow. So far the books I've found talk of diabetes from the point of someone who's diabetic ill health has lead them through prediabetes, type 2, type 1 etc...

Whilst its informative to read these books I feel most of it means very little to someone like myself who became type 1 equivalent via surgery.

Can anyone out there recommend any good books that discuss diabetes management from this angle?

Before diabetes I used to follow a very low carb diet. When I became diabetic my dietitian advised I follow a carb rich diet. But every thing I read suggests a low carb diet. I'm having sugar spikes and want to resolve it quickly. I'm confused and would like some written guidance on this topic.

I hope you can help.
Richard, 34, UK
 
Define "sugar spikes"

I would have thought that regular advice to T1 applies to you as well - T1 is loss of beta cells due to an autoimmune reaction, resulting in a total insulin deficit which is what you are suffering from as well.

Low-carb is perhaps more helpful/important for T2 patients since you can reasonably easily correct for carbohydrate intake with insulin injections. For obvious reasons, I cannot advice you to eat a low-carb diet given that you have been told not to by your dietitian (advice which is in line with NHS recommendations).

Personally, I find it easier to believe advice from the NHS (who will ultimately pay the bill for complications) than authors in the business of having a cure for diabetes.
 
Hi Richard,

I'm a Type 1 - so, like you, have no pancreatic function. Don't worry too much on how you got to this position in terms of how to control it; the main issue with Type 1 and Type 2 diabetes is that Type 2's have some pancreatic function; and as such can have wide differences in what they can do with regards to carbohydrate consumption.

The best book I've read on controlling diabetes and avoiding the myriad complications is Dr. Bernstein's 'Diabetes Solution'. He is a US doctor who advises a very low carb diet.

As you have noticed that is not the advice given by the NHS; but the NHS advice is, in my humble but correct opinion*, nonsense.

I'd go back to your low carb diet, test regularly and try manage your insulin in relation to how much carbs you are eating. Bernstein talks about the 'laws of small numbers' where he essentially says the less carb and the less insulin you take the more predictable the outcome is. He, for instance, advises against injecting in one site more than 7 units of insulin (as I recall).

How much carb you eat will be down to you but I've found that the best control I've achieved is through severely restricting carbohydrates.

Other books you may find useful are 'Think Like A Pancreas' and 'Blood Sugar 101' - both quite American but potentially useful.

Also, read up on old posts here - there is a lot of information.

Good luck with it and welcome to the club :shock:

Dillinger

* I think I stole that phrase from Barry Humphries; it's a wonderful line I think... :)
 
I'm with Dillinger on Rating Dr. Bernstein's book as the best learning resource for newly diagnosed T1s. He is himself a life-long T1 and developed his approach to treatment by looking at what actually works. The NHS DOESN'T do this. If something doesn't work for you, they are quite likely to tell you you are not following instructions properly, even if you KNOW you're following them to the letter. For them, there's no such thing as 'rubbish instructions', Only non-compliant patients
Hana
 
It's not exactly the same as T1. The total removal of the pancreas means not just that there are no beta cells to produce insulin, but also no alpha cells so glucagon deficiency and a potential for rapid hypos. There will be no pancreatic enzymes to break down carbs, fats and proteins. I think that these things will need to be taken into account when any advice is given. I think that you really need some expert input from specialists including a specialist dietitian. (for example if you vary the diet that was suggested, do you also vary the enzymes?)
I don't know if you have looked at the accounts on this site. 'Ann' describes her diet following the removal of her pancreas.
http://www.pancreaticcancer.org.uk/info ... et-stories
(the site also has a forum)
I know of a couple of people on diabetes forums that have this type of diabetes. One is a child who had her pancreas removed when a baby so obviously some of her issues are different . She now uses a pump and is also I believe funded for a continuous monitor.
http://www.hi-fund.org/jessica3.html
There are also 2 other people in a similar position who currently post on another forum (not supposed to link and you haven't posted enough to receive pms so try googling (pages from UK) pancreas removed diabetes support forum
 
phoenix said:
The total removal of the pancreas means not just that there are no beta cells to produce insulin, but also no alpha cells so glucagon deficiency and a potential for rapid hypos. There will be no pancreatic enzymes to break down carbs, fats and proteins.
Click to expand...

Oops - consider me corrected - I'd go with what Phoenix is saying; it's not as simple as I thought.

Best

Dillinger
 
I understand that this particular type of diabetes can be a bit of a tricky swine to control, so I can certainly see the benefits of both the pump and the low-carb approach. But, as phoenix pointed out, I'm not sure how you'd get on as far as enzyme supplements are concerned - especially if you're considering a low-carb/high fat diet.
 
Welcome to the forum Richard! :)

Hopefully the links that Phoenix kindly provided will be of some use to you.
 
Thanks everyone for your posts, and sorry it's taken me a few days to respond.

Your input is really appreciated, and I will check the links you have suggested.

Richard
 
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