Does diet matter for a type 1?

[mon]

Hello everyone, I'm a T1 diabetic, diagnosed 3 years ago at the age of 24. After a long honeymoon period now my sugar levels are going mad and nothing I do seems to be able to control it. I've gone from feeling in control to feeling upset, frustarted and tearful as waking up with levels of 20 even tho have upped my Lantus yet again. At my DRs appt today everything I wanted to discuss (diet changes, low carb, diff insulin etc) was completely dismissed - he told me the only solution was to keep upping insulin dosage. he said diet was not the answer and the only way was to keep increasin g till normal - but is he right?? Are there any other T1s who have been in a similar situation and how did you bring your levels down? Is this essentially just down to increasing meds? I have read this site religiously for the past 2 days and its been an eye opener for me but I;m now massively confused as until now have not heard of a low carb diet for T1 and have been heavily basing each meal on carbs. I have bought all the GI books as believe this is the healthiest way so would love to hear from anyone that has gained good control using GI or if I dont go to no-carb should I cut down on carbs?
Any advise would really be appreciated, thank youx

 

[hanadr]

No carb is near impossible, but reducing carbs is likely to help quite a bit. If you cut back and then use low GI carbs, you should see an improvement fairly soon. AND be able to reduce your insulin. It would be a good idea to monitor frequently, whilst carrying out any changes you choose to make though.
You don't say what regime you are on.

 

[acron^]

I can certainly vouch for a reduced carb diet. My levels are a lot less volatile (other than my current DP situation!) and I'm injecting a lot less insulin. I think every diabetic needs to come to terms with the fact that the NHS is not necessarily a one-stop authority on what is best. Sadly.

As Hanadr said, no-carb is virtually impossible. So stay low-GI and start counting what you're eating. I found it easier to start off by measuring the weight of any carby foods you eat and then once you're used to whipping out the scales each meal time, you can start converting those into carb amounts and figuring out what your ratios are.

 

[fergus]

At my DRs appt today everything I wanted to discuss (diet changes, low carb, diff insulin etc) was completely dismissed - he told me the only solution was to keep upping insulin dosage. he said diet was not the answer and the only way was to keep increasin g till normal - but is he right??

Sadly, a very common experience. Your doctor has dismissed 70 years of experience in treating diabetes by restricting the foods which disrupt blood sugars. He's opted for the current practice of medication to whatever degree necessary to accommodate an inappropriate diet.
He might be completely unaware of the many harmful effects of large insulin doses, though they wouldn't be lost an any layperson with an hour or two to spend on the internet.
If your bg gets to double figures, let alone 20 mmol/l, it's a certain sign that your eating the wrong things.

Bear in mind that it's possible to maintain normal blood sugars using low insulin doses, if your diet is right. If your diet is wrong, even large insulin doses won't protect you from abnormal blood sugars.

The answer is rarely in increasing medication because all medications have side effects. You can improve your bg's AND reduce your meds if you get your diet right. Prove your doctor wrong!

All the best,

fergus

 

[Jen&Khaleb]

Hi there,

In a different thread I commented on hospital staff telling a young girl (newly diagnosed) to continue having her normal diet. I can't see how it is possible to be on insulin therapy and eat whatever/whenever you want. Insulin peaks at certain times and works for certain times and it is easier to work food around that than the other way around. I do see that diabetics should be able to eat everything, but in limited amounts for high GI products, and, after some insulin planning first.

Good control needs to be balanced with your lifestyle. Weight problems are better avoided also.

I think diet really does matter!

Jen.

 

[totsy]

i found my diabetes easier to control and my weight by going lower carb, i have around 80g a day and have managed to get a good hba1c and lost lots of weight, we are all different but its a matter of finding what works for you,
its worth a try

 

[phoenix]

have bought all the GI books as believe this is the healthiest way so would love to hear from anyone that has gained good control using GI

I use a gi approach coupled with exercise and have got very good control. I'm a post menopausal woman (so in theory need fewer calories/carbs) I have a normal BMI, am very active (running, walking etc) My average carb intake is 150gm a day.
But diet does matter, you can't get away from it. You can't necessarily eat a 'normal' diet ,unfortunately many peoples 'normal' diets are far from healthy. For example, a gi approach means steering clear of overprocessed refined foods , taking care to choose lower gi starches and then using cooking methods which won't then raise the gi. It's also important to find out your own reaction ,using your meter to different types of foods(particularly starches).
Just as the type of carbs chosen is important, so is the amount which will vary according to your individual needs (gender/age/ activity level. )

I think that your doctor is right to get your lantus correct. This should keep your glucose steady whether you are eating or not. However, just increasing the dose is not a sensible way to go about it. Here is a link to an excellent post elsewhere which tells you how to go about this.
http://www.diabetesdaily.com/forum/articles/16675-basal-testing-multiple-daily-injections
The other thing is to make sure that you are accurately counting the carbs that you are eating. The online course from the Bournemouth hospital could help with that.http://www.bdec-e-learning.com/

 

[diabetesmum]

Hi Mon,
I agree with everything the others have said, diet does matter. Reducing carbs seems to help the majority of people. My older daughter is Type 1, she lowish carbs (around 70gm a day), and her BG's stay in single digits. She used to run high at night too (often up in the 20's), tried both Lantus and Levemir, and was finally put on an insulin pump. You really do have to carb count for this, but again, the fewer the carbs, the less insulin you need. And you can get very tight control of your basal, including through the night, as pumps can be programmed to give you precise amounts of insulin on an hour to hour basis. It is hard work to set up whilst getting your ratios correct etc, but is so worth it.

You might like to research pumps and then if you think it may be right for you, ask your Dr for a referral to a clinic where pumping is looked upon with favour. Of course not everyone wants to go on a pump and it certainly isn't the only solution, just one I thought you might not seriously have considered.
Best wishes,
Sue

 

[fairplayuk]

Hi

Strongly suggest you ask to be referred to DAFNE training. Dose Adjustment For Normal Easting.

Recently attended and was strongly advised to check BS at 3am if waking high.

Principle being - that early morning highs can be caused by taking too much background insulin. !!

EG :If you go to bed somewhere between 6-8 and are high the following morning, you need to check bs at 3am because you may be taking too much insulin and going hypo in your sleep. This results in the liver producing glucose to compensate and you end up high.

If you are high before bed/high at 3pm and high in the morning then you may need more background insulin.

It's worth checking and doesnt have to be done every day at 3am - just ro check whether you need more - or less.

I know it flies in the face of 70 years re high sugar needs more insulin but DAFNE believes many are on doses which are too high.

Definitely advice - check DAfne web site and ask consultant about this
.

 

[MichelleP]

Hi Mon,

If you're going to bed with 'normal' blood levels and waking up around 20, then it definitely sounds like to need to check you're levels in the middle of the night to check that you're not having hypos in the night.

Carb counting can really help with control when on multiple injections. I haven't ever followed a high or low carb diet, but I do have some carb with every meal, and I do think a healthy low GI diet is a good idea.

I was diagnosed with type 1 when I was 24, 5yrs ago, and still find that from time to time my blood sugars seem to start going all over the place. It's a pain in the backside, but I find that writing everything down really helps to identify patterns that could be causing highs or lows. I keep records of blood sugar levels, insulin taken, food eaten (especially carbs), exercise taken, alcohol, menstrual cycle and sometimes even the weather! Diet is really important, but it's not the only thing you need to consider.

Was it your GP or someone from your diabetes care team that didn't want to talk about changing your diet etc.? Either way, I think you should try to see a (different) diabetes specialist nurse in your care team. It's difficult at times to be assertive with so-called experts, but it's important to talk about what you want to know. Might it help to take a friend with you for moral support?

Don't despair!! You will get it under control again.

Good luck

Michelle

 

[Dillinger]

I would change your doctor - they are seriously off the mark, not merely by not responding to your questions (remember about all that choice we are supposed to have in return for the additional NHS funding) but their advice is poor to say the least.

Ask for a specialist diabetic doctor or to be referred to a specialist diabetic clinic at (if possible) a teaching hospital.

Read the forums here especially the success story ones and really think hard about dropping all starch from your diet.

The advice about 3:00 a.m blood test is very good - try and do that for a few nights to see what's going on as well.

I'm a Type 1 and I found that dropping carbohydrates had the same effect as serious exercise every day in dropping my blood sugars, but it also meant less hypos as well. It's not an easy road to follow but it really does work.

I found the Bernstein book very helpful as an explanation and a guide.

Lastly, if you had a nut allergy and your doctor said whatever you do don't stop eating nuts just keep increasing the Antihistamines would you think he was making sense? I really think the advice given is akin to that...

All the best

Dillinger

 

[Carol11]

Yes diet matters see the other posts. But what you don't mention is if you are taking a rapid acting insulin, such as NovoRapid, at meal times. These types of insulin are meant to act on the meal you are about to consume. You dose according to the amount of carbs in the meal, your dietician can help you there. The starting basis is 1iu insulin for each 15g of carbs-refered to as carb counting and a process of testing to see what works for you. You inject that 5-10 minutes before you start to eat. The Lantus is a basal insulin good for 24 hours and meant to be a background insulin to cover the basic body functions to keep the body working. Search around this website and others
for more info geared towards the UK. I'm in Canada but there is nothing different in dealing with this no matter where you live. Good luck and keep the board informed. We are all behind you in your quest. Allmthe best, Carol

 

[fergus]

You're right to raise the issue of rapid acting insulin Carol.
The fact that they act quickly means that they are a good choice if you are eating fast acting carbohydrates. If a meal is very low carb, there is a risk of the insulin running ahead of the glucose released from the digestion of protein.
Some find that slower acting insulins such as Humulin R more closely match the digestion of a low carb diet.

fergus

 

[mon]

this advice is incredible thanks so much to everyone. I realise I have no clue at all about how to carb count - I just thought the right thing to do was to heavily base every meal on carbs so my diet is always big bowls of pasta, rice, potatoes, whole grain bread - loads of carbs with every meal. Despite eating all of this I am still losing weight and feel tired all the time. I take Novo rapid and am now on 11 units + per meal.
I didnt realise the link between the two. I think cutting down on carbs and sticking to low GI foods is really going to help me
Can anyone recommend a book that explains about carb counting and how to do it?

Plus thanks so much for the heads up about Dafne course! I have already got in touch with them to try find out about a place - it sounds like exactly what I need! Thank you!

 

[increasingly cynical]

A quick query which some of the posts here have raised... it seems that people on insulin are having very similar problems to people not on insulin...in particular 'liver dumps' on 'lowish BGs'... does that mean that if the dose of insulin is wrong you can end up with problems like ketoacidosis??

 

[Jen&Khaleb]

Hi,

I think you will find most people are concerned about long term health and keeping bsl's in target zones to achieve that goal. Ketoacidosis (coming from high levels) can occur quickly in 12-24 hours but would normally occur in someone who hasn't monitored their blood sugar, forgot their insulin or was suffering from an illness. I have been led to believe that organ damage can occur from repeated low levels but I'm sure others would have more info on the long term damage from that and there is also the risk of a severe hypo and coma. General high blood sugar levels all the time will put you more at risk of kidney, eye and vascular damage.

We all struggle along at times but if bsl's are on track for the majority of the time the risks for long term health should be minimal.

Cheers, Jen.

 

[kegstore]

Hi,

I think you will find most people are concerned about long term health and keeping bsl's in target zones to achieve that goal. Ketoacidosis (coming from high levels) can occur quickly in 12-24 hours but would normally occur in someone who hasn't monitored their blood sugar, forgot their insulin or was suffering from an illness. I have been led to believe that organ damage can occur from repeated low levels but I'm sure others would have more info on the long term damage from that and there is also the risk of a severe hypo and coma. General high blood sugar levels all the time will put you more at risk of kidney, eye and vascular damage.

We all struggle along at times but if bsl's are on track for the majority of the time the risks for long term health should be minimal.

Cheers, Jen.

I think DKA is caused by a lack of insulin, not a lack of monitoring?! :wink:

There's some evidence that repeated hypoglycaemic episodes over a long period of time can cause neurological damage, but I'm not sure about other organs. There are other implications too, such as hypo unawareness.

I read somewhere, possibly on this forum, that a toxic glucose level - at which vascular damage can theoretically start - is only 7 mmol/l, which puts quite a few oft-quoted targets into perspective.

The large number (in percentage terms) of diabetics with complications of one sort or another suggests that a lot do not keep on track for the majority of the time. That's not a criticism of care, just an alarming fact. :shock:

 

[janabelle]

Hi Mon,
this is the second posting about this subject I've read in 2 days. The link between the 2 postings seems to be Lantus. Yours, and the other, under the heading 'Lantus Problem'. I had dreadful control while on Lantus for 4 1/2 years, and good control since coming off it. While on Lantus, my blood sugar could be up through the roof between 15 and 21 one day, and the next I couldn't keep it above 4, despite taking the same dose and NO rapid acting! I had no idea what to expect from day to day, it was a nightmare,and I got bu**er all help from my doc. Very grateful to find out what was the cause of it and get off it.
Best of luck
Jus

 

[livingthedream]

I agree you should try and get on a DAFNE or similar course, it worked for me and if nothing else gives you a better understanding of what is happening to your body. If you have high blood sugar and have the time try going to the gym three of four times a week, this helped me to reduce my insulin doses as my body burned off the sugars itself during exercise. Diet does of course matter, but its not the only thing that is a contributor to your over all control. I try and eat healthy food but need to eat high carbs as well because of the exercise as i need the energy, maybe speak to a nutritionist who will be able to give you a lot of info. As mentioned before we are all different and our bodies cope in different ways, but there is plenty of help out there and if we all had normal blood sugar levels we wouldn't be Diabetics so little problems a long the way are to be expected dont get disheartened we've all be there.

 

[janabelle]

Yeah, we're all different so why are all type-1s put on the same 2 similar long acting analogues ??
Of course blood sugar control in a diabetic person is never going to be perfect, but if your insulin doesn't work as it should, you're fighting a losing battle, as I discovered :cry:
Not everyone can gain adequate control on synthetic insulins, and if it were another medication for another condition, a good doctor would suggest trying an alternative medication.
Jus