Slow release carbs work for you?

[Kathy Marks]

Hi, I have recently been diagnosed with RH. An absolute relief as I have spent most of my life on the rollercoaster ride of sugar highs and lows. I have always been very active and always relied on carbs for my fuel. Do you focus on slow release carbs as your fuel source? I have tried no or low carbs and had the worst hypos, double vision, confused, shaking etc, going home from work. So instead I'm experimenting with sweet potatoes, quinoa, freekah, wild rice etc and alongside this gradually reducing my addiction to sweets. I am buying a glucose monitor to fine tune as I go. But I have read posts on here about low, no carbs. Is this so, or do many of you focus on slow release carbs too? Ps last week I had a blissful day of 6 small meals with no rollercoaster. HEAVEN! I eat well - eggs, meat, cheese, pulses, slow release grains.

I have been recently diagnosed as well. I gave up coffee, which is making me feel tired and have a head ache. I am trying to mix whole grains with protein and fat. Do you eat sugar?

 

[SJP23]

I have been recently diagnosed as well. I gave up coffee, which is making me feel tired and have a head ache. I am trying to mix whole grains with protein and fat. Do you eat sugar?

 

[Antje77]

I have been recently diagnosed as well. I gave up coffee, which is making me feel tired and have a head ache. I am trying to mix whole grains with protein and fat. Do you eat sugar?

Do you use a glucose meter to see what your blood glucose is when you're having symptoms?

 

[SJP23]

Hi Kathy,

Fingers crossed the headaches subside. I have heard coffee withdrawal can do this.

Yes, I eat sugar. In the couple of months since my diagnosis ( I'm still on the journey of figuring it out) these are some of the helpful things I've found out about sugar ( it's worth reading earlier posts from members in this thread):

Sugar treats that aren't the white refined sugar. I'm experimenting ( some great and some awful!) with recipes. Sweet potato cacao brownies, cacao protein balls for example. I'm training myself to like 90 and 100 per cent chocolate and am almost there! I'm realising there's a whole world of treats still available. Just different ones.

Less sugar generally in savoury stuff. Eg my favourite Bosh veg chilli. Just the soy sauce now, not the maple syrup, dark choc and tomato puree.

Trying to eat more green carbs not starchy carbs.

Food ordering ( member in this thread suggested this) works. Starches last on the plate and smallest quantity compared to veg, protein, fat. Fruit n dark choccie end of the meal.

Frustratingly, this is only half the picture. As after a few days or all of my working week of planned menu, batch cooking etc I fall off the wagon back into sugar binging. The headaches are horrid and I feel AWFUL. It's like an addiction! But I know I can get there and I will. A member suggested a Libre sugar monitor and I'm going to use them again. I was reducing the Himalayan mountain peaks and valleys to UK hill ranges by close monitoring . This could help you work out what works for you?

Your sugar tolerance may be so different to mine so I expect some on here wouldn't eat the above? I think mine is worlds away from old me bouncing from one hypo to another on my carb monster diet. Yet maybe I will have to review the sugars I still consume. What I already know is that having days without hypos is utterly life changing and feels beyond GREAT! It takes time to adjust.

Good luck with your journey. Let us
know how you're getting on?

 

[Lamont D]

I have been recently diagnosed as well. I gave up coffee, which is making me feel tired and have a head ache. I am trying to mix whole grains with protein and fat. Do you eat sugar?

Hi Kathy welcome to our forum.
I would first recommend reading the sticky at the top of the forum page.
That should give you an inkling of what you are up against with dietary recommendations.
RH is all about the 'Reaction' to food.
You have experienced the hypoglycaemia bit..
I believe that, it is better to stop the hypos and the spikes that trigger the reaction.
The main trigger to my spike and my hypos are carbs and sugars.
I have a dairy intolerance since young. But since before diagnosis over a decade ago, my intolerance to all sugars and the majority of carbs is with me all the time.
Your intolerance to food may be not as severe as mine, but you can only find out through testing and experimenting. It is individual, and what works for me, might not for you.
It is really good that you have had that day when the hypoglycaemia wasn't part of your battle, and that the six meals worked. But that is unsustainable for many reasons, especially preparation and cost.
The six meals would still trigger the excess insulin that causes the hypo.
It would also create the spike unless the meal is low carb.
The six meals a day is a temporary solution.
You would be still doing the rollercoaster, but stopping the hypoglycaemia by creating another spike.
The best treatment, dietary, is low carb to maintain levels of near normal range of blood glucose levels.
This is how I treat my RH.
One of the mantras we use is.

No carbs, no spikes, no triggers, no overshoot of insulin, no hypoglycaemia.

And to help you understand about energy levels, which I have really good energy levels.
The majority of people get there energy from carbs or sugars. You can also get your energy levels from being in ketosis, fat adapted or low carb.
you do not have to eat carbs for energy.

What tests have you had?
Dietary recommendations?
Did you get diagnosed by an endocrinologist?
Any meds?

For me a period of testing and experimenting around you favourite foods and drinks, keeping a food diary. Using a glucometer or a CGM to discover how to control the condition.
Deciding how you approach the diet.
And discovering those foods to avoid.
I follow a tailored balanced diet, designed by me, with natural fats and avoid anything but fresh food cooked by me.

Keep asking,
Keep learning about the condition.
It is not easy,
Again, welcome to the forum.

 

[Kathy Marks]

Hi Kathy,

Fingers crossed the headaches subside. I have heard coffee withdrawal can do this.

Yes, I eat sugar. In the couple of months since my diagnosis ( I'm still on the journey of figuring it out) these are some of the helpful things I've found out about sugar ( it's worth reading earlier posts from members in this thread):

Sugar treats that aren't the white refined sugar. I'm experimenting ( some great and some awful!) with recipes. Sweet potato cacao brownies, cacao protein balls for example. I'm training myself to like 90 and 100 per cent chocolate and am almost there! I'm realising there's a whole world of treats still available. Just different ones.

Less sugar generally in savoury stuff. Eg my favourite Bosh veg chilli. Just the soy sauce now, not the maple syrup, dark choc and tomato puree.

Trying to eat more green carbs not starchy carbs.

Food ordering ( member in this thread suggested this) works. Starches last on the plate and smallest quantity compared to veg, protein, fat. Fruit n dark choccie end of the meal.

Frustratingly, this is only half the picture. As after a few days or all of my working week of planned menu, batch cooking etc I fall off the wagon back into sugar binging. The headaches are horrid and I feel AWFUL. It's like an addiction! But I know I can get there and I will. A member suggested a Libre sugar monitor and I'm going to use them again. I was reducing the Himalayan mountain peaks and valleys to UK hill ranges by close monitoring . This could help you work out what works for you?

Your sugar tolerance may be so different to mine so I expect some on here wouldn't eat the above? I think mine is worlds away from old me bouncing from one hypo to another on my carb monster diet. Yet maybe I will have to review the sugars I still consume. What I already know is that having days without hypos is utterly life changing and feels beyond GREAT! It takes time to adjust.

Good luck with your journey. Let us
know how you're getting on?

Thank you so much!! I've seen three endocrinologists. The first one kind of wrote me off, the second thought first it was that I wasn't eating enough carbs and the third said, Reactive Hypoglycemia. She recommended mixed meals. I still get a spike, but not that big. I've notices some starchy carbs like yams may bring it up to the high 120's. I'm eating protein, veggies, some fat and whole grain bread(just one slice) and some brown rice or even a whole wheat cracker with cheese for a sanck. I still need to figure out exercising. I am scared to walk too much. I haven't had any hypos in a week, but I worry I might be eating too often. I have the three meals and snacks. I'm trying to space them out. I know it's experimenting.

Thanks you again, Kathy

 

[Kathy Marks]

Do you use a glucose meter to see what your blood glucose is when you're having symptoms?

Yes, I have a Freestyle Lebre 3 sensor and a meter.

 

[Kathy Marks]

Hi Kathy welcome to our forum.
I would first recommend reading the sticky at the top of the forum page.
That should give you an inkling of what you are up against with dietary recommendations.
RH is all about the 'Reaction' to food.
You have experienced the hypoglycaemia bit..
I believe that, it is better to stop the hypos and the spikes that trigger the reaction.
The main trigger to my spike and my hypos are carbs and sugars.
I have a dairy intolerance since young. But since before diagnosis over a decade ago, my intolerance to all sugars and the majority of carbs is with me all the time.
Your intolerance to food may be not as severe as mine, but you can only find out through testing and experimenting. It is individual, and what works for me, might not for you.
It is really good that you have had that day when the hypoglycaemia wasn't part of your battle, and that the six meals worked. But that is unsustainable for many reasons, especially preparation and cost.
The six meals would still trigger the excess insulin that causes the hypo.
It would also create the spike unless the meal is low carb.
The six meals a day is a temporary solution.
You would be still doing the rollercoaster, but stopping the hypoglycaemia by creating another spike.
The best treatment, dietary, is low carb to maintain levels of near normal range of blood glucose levels.
This is how I treat my RH.
One of the mantras we use is.

No carbs, no spikes, no triggers, no overshoot of insulin, no hypoglycaemia.

And to help you understand about energy levels, which I have really good energy levels.
The majority of people get there energy from carbs or sugars. You can also get your energy levels from being in ketosis, fat adapted or low carb.
you do not have to eat carbs for energy.

What tests have you had?
Dietary recommendations?
Did you get diagnosed by an endocrinologist?
Any meds?

For me a period of testing and experimenting around you favourite foods and drinks, keeping a food diary. Using a glucometer or a CGM to discover how to control the condition.
Deciding how you approach the diet.
And discovering those foods to avoid.
I follow a tailored balanced diet, designed by me, with natural fats and avoid anything but fresh food cooked by me.

Keep asking,
Keep learning about the condition.
It is not easy,
Again, welcome to the forum.

Thank you. Yes, I got diagnosed my last endo with RH. SHe said to try mixed meals. Eat protein or fat with carbs. I wear a sensor and I still get some post prandial spikes. They're not too high, 120's (6-6.7) I have had a couple higher spikes. Fasting is at 4.0-4.7

 

[Kathy Marks]

Hi Kathy,

Fingers crossed the headaches subside. I have heard coffee withdrawal can do this.

Yes, I eat sugar. In the couple of months since my diagnosis ( I'm still on the journey of figuring it out) these are some of the helpful things I've found out about sugar ( it's worth reading earlier posts from members in this thread):

Sugar treats that aren't the white refined sugar. I'm experimenting ( some great and some awful!) with recipes. Sweet potato cacao brownies, cacao protein balls for example. I'm training myself to like 90 and 100 per cent chocolate and am almost there! I'm realising there's a whole world of treats still available. Just different ones.

Less sugar generally in savoury stuff. Eg my favourite Bosh veg chilli. Just the soy sauce now, not the maple syrup, dark choc and tomato puree.

Trying to eat more green carbs not starchy carbs.

Food ordering ( member in this thread suggested this) works. Starches last on the plate and smallest quantity compared to veg, protein, fat. Fruit n dark choccie end of the meal.

Frustratingly, this is only half the picture. As after a few days or all of my working week of planned menu, batch cooking etc I fall off the wagon back into sugar binging. The headaches are horrid and I feel AWFUL. It's like an addiction! But I know I can get there and I will. A member suggested a Libre sugar monitor and I'm going to use them again. I was reducing the Himalayan mountain peaks and valleys to UK hill ranges by close monitoring . This could help you work out what works for you?

Your sugar tolerance may be so different to mine so I expect some on here wouldn't eat the above? I think mine is worlds away from old me bouncing from one hypo to another on my carb monster diet. Yet maybe I will have to review the sugars I still consume. What I already know is that having days without hypos is utterly life changing and feels beyond GREAT! It takes time to adjust.

Good luck with your journey. Let us
know how you're getting on?

It's hard. I'd try not be hard on yourself. I am mourning the loss of sugary treats and even afraid of fruits. I eat a 12 grain bread that hardly makes the sugar go up. At least I don't have a head ache today. Still miss coffee. I'd love to hear how you're doing as well.

 

[Kathy Marks]

Hi Kathy welcome to our forum.
I would first recommend reading the sticky at the top of the forum page.
That should give you an inkling of what you are up against with dietary recommendations.
RH is all about the 'Reaction' to food.
You have experienced the hypoglycaemia bit..
I believe that, it is better to stop the hypos and the spikes that trigger the reaction.
The main trigger to my spike and my hypos are carbs and sugars.
I have a dairy intolerance since young. But since before diagnosis over a decade ago, my intolerance to all sugars and the majority of carbs is with me all the time.
Your intolerance to food may be not as severe as mine, but you can only find out through testing and experimenting. It is individual, and what works for me, might not for you.
It is really good that you have had that day when the hypoglycaemia wasn't part of your battle, and that the six meals worked. But that is unsustainable for many reasons, especially preparation and cost.
The six meals would still trigger the excess insulin that causes the hypo.
It would also create the spike unless the meal is low carb.
The six meals a day is a temporary solution.
You would be still doing the rollercoaster, but stopping the hypoglycaemia by creating another spike.
The best treatment, dietary, is low carb to maintain levels of near normal range of blood glucose levels.
This is how I treat my RH.
One of the mantras we use is.

No carbs, no spikes, no triggers, no overshoot of insulin, no hypoglycaemia.

And to help you understand about energy levels, which I have really good energy levels.
The majority of people get there energy from carbs or sugars. You can also get your energy levels from being in ketosis, fat adapted or low carb.
you do not have to eat carbs for energy.

What tests have you had?
Dietary recommendations?
Did you get diagnosed by an endocrinologist?
Any meds?

For me a period of testing and experimenting around you favourite foods and drinks, keeping a food diary. Using a glucometer or a CGM to discover how to control the condition.
Deciding how you approach the diet.
And discovering those foods to avoid.
I follow a tailored balanced diet, designed by me, with natural fats and avoid anything but fresh food cooked by me.

Keep asking,
Keep learning about the condition.
It is not easy,
Again, welcome to the forum.

No meds. If I can't manage with a mixed meal diet, then possibly try Acarbose or Metformin in a low dose. What's your glucose level when you exercise?

 

[Lamont D]

No meds. If I can't manage with a mixed meal diet, then possibly try Acarbose or Metformin in a low dose. What's your glucose level when you exercise?

No meds. If I can't manage with a mixed meal diet, then possibly try Acarbose or Metformin in a low dose. What's your glucose level when you exercise?

Thanks for your replies.
First, we have had quite a few that have been put on acerbose, it doesn't work.
It is supposed to help reduce the impact of the carbs, it doesn't.
There is only one meds that has a initial effect on your levels, that is, I have my research and the trial I was on doing research, however, it should only be a temporary solution. And of course with all drugs there could be side effects.
The science of this drug. Sitagliptin.
It is designed to assist with first phase insulin/hormonal response to food. To produce more insulin to help with the glucose derived from the carbs from the meal. So the spike is lowered to reduce the spike and lower the need for the overshoot (second phase insulin response) this is the reason for the hypo, because the pancreas creates too much insulin, and the normal function of the liver is to create more glucagon (glucogenisis) to offset this overshoot is not enough.
Exercise is an issue with me.
I can only do light exercise such as walking, swimming, and maybe chores and such.
Age, a few issues with other conditions, arthritis such restricts me.
But the healthier I became after diagnosis, I was able to do full time job, manual, on my feet all day.
And because I wasn't having hypos, I was never tired or suffered from the symptoms, because of being in ketosis.
It is another thing to discover how much you can exercise.

You are right, about eating too much, my intake is quite low now.
What you could eat in two of them meals, does me for the whole day.

A dietician/doctor to ask you to eat so much, never mind not knowing the science behind RH, but asking you to eat more calories and not know the effect, the reaction on your health is shocking,!
That is my opinion.
My endo would never advise the amount of food as it is the food that trigger the reaction.
It was he who got the research done.
It was he who talked me through the science of RH.

You never mentioned what tests you have had. And I get the battles with other endos, like I did.
I'm sorry it's a long post. But I know what it's like to be given a diagnosis and discover, that, you are virtually alone, with a rare condition. Looking for answers.
And that was me, over a decade ago.

And if it wasn't for my endocrinologist, this forum and one other. My research and my experimenting and food diary, testing, reading, learning and experience of it all. This forum helped me so much, I am fully aware of where I would be now.

Lastly just to show how bad some carbs can be to me.
One spud, will spike me high teens mmols from normal after around 45minutes.
A slice of white bread, from normal, mid teens mmols.
A slice of wholemeal, around 12 mmols.
Any cake in low teens mmols.
Most biscuits, even small ones, around a 5-6mmols increase.
For some reason, I have small pieces of fruit throughout the day without issue and it's valuable minerals. Mainly northern fruit, berries, strawberries. Tropical fruit can be hazardous tho.

Do keep asking.
It's a lot to take in.
It means a complete change in how you eat.
It's hard.
But it works for me.
I eat a lot of meat, salad, animal fats to cook, I roast or grill most, but I fry, and have the fat off the meat, as that satiated me. I can't have dairy, lactose intolerant. But you can, it's good low carb food. Full fat.
Start reading labels, the carb factor, and the sugar.
Beware of manufactured foods, full of ingredients, hidden sugars, palm oil, and such, of which does not help with the diet.
Eggs are a must go to, fish and other above ground vegetables. Mushrooms, onions and such.
You have to experiment. And draw your own conclusions.
I will help you understand.
Best wishes
Do let us know how you get on.

 

[Kathy Marks]

Thanks for your replies.
First, we have had quite a few that have been put on acerbose, it doesn't work.
It is supposed to help reduce the impact of the carbs, it doesn't.
There is only one meds that has a initial effect on your levels, that is, I have my research and the trial I was on doing research, however, it should only be a temporary solution. And of course with all drugs there could be side effects.
The science of this drug. Sitagliptin.
It is designed to assist with first phase insulin/hormonal response to food. To produce more insulin to help with the glucose derived from the carbs from the meal. So the spike is lowered to reduce the spike and lower the need for the overshoot (second phase insulin response) this is the reason for the hypo, because the pancreas creates too much insulin, and the normal function of the liver is to create more glucagon (glucogenisis) to offset this overshoot is not enough.
Exercise is an issue with me.
I can only do light exercise such as walking, swimming, and maybe chores and such.
Age, a few issues with other conditions, arthritis such restricts me.
But the healthier I became after diagnosis, I was able to do full time job, manual, on my feet all day.
And because I wasn't having hypos, I was never tired or suffered from the symptoms, because of being in ketosis.
It is another thing to discover how much you can exercise.

You are right, about eating too much, my intake is quite low now.
What you could eat in two of them meals, does me for the whole day.

A dietician/doctor to ask you to eat so much, never mind not knowing the science behind RH, but asking you to eat more calories and not know the effect, the reaction on your health is shocking,!
That is my opinion.
My endo would never advise the amount of food as it is the food that trigger the reaction.
It was he who got the research done.
It was he who talked me through the science of RH.

You never mentioned what tests you have had. And I get the battles with other endos, like I did.
I'm sorry it's a long post. But I know what it's like to be given a diagnosis and discover, that, you are virtually alone, with a rare condition. Looking for answers.
And that was me, over a decade ago.

And if it wasn't for my endocrinologist, this forum and one other. My research and my experimenting and food diary, testing, reading, learning and experience of it all. This forum helped me so much, I am fully aware of where I would be now.

Lastly just to show how bad some carbs can be to me.
One spud, will spike me high teens mmols from normal after around 45minutes.
A slice of white bread, from normal, mid teens mmols.
A slice of wholemeal, around 12 mmols.
Any cake in low teens mmols.
Most biscuits, even small ones, around a 5-6mmols increase.
For some reason, I have small pieces of fruit throughout the day without issue and it's valuable minerals. Mainly northern fruit, berries, strawberries. Tropical fruit can be hazardous tho.

Do keep asking.
It's a lot to take in.
It means a complete change in how you eat.
It's hard.
But it works for me.
I eat a lot of meat, salad, animal fats to cook, I roast or grill most, but I fry, and have the fat off the meat, as that satiated me. I can't have dairy, lactose intolerant. But you can, it's good low carb food. Full fat.
Start reading labels, the carb factor, and the sugar.
Beware of manufactured foods, full of ingredients, hidden sugars, palm oil, and such, of which does not help with the diet.
Eggs are a must go to, fish and other above ground vegetables. Mushrooms, onions and such.
You have to experiment. And draw your own conclusions.
I will help you understand.
Best wishes
Do let us know how you get on.

It's not a long post. You are helping me understand. I haven't had the mixed meal test done yet, but my doctor is ordering it for me. I have cut out fruit for now and caffeine and have a light load of carbs paired with meat or cheese and some veggies and fats like almond butter or avocado. I know what you mean about hidden sugars. I saw my almond butter had palm oil. I'm researching some other no sugar added brands. I've been able to keep my blood sugar stable with some small spikes after a meal. Do you stay flat with your diet? Thank you again!!! Kathy

 

[Kathy Marks]

It's not a long post. You are helping me understand. I haven't had the mixed meal test done yet, but my doctor is ordering it for me. I have cut out fruit for now and caffeine and have a light load of carbs paired with meat or cheese and some veggies and fats like almond butter or avocado. I know what you mean about hidden sugars. I saw my almond butter had palm oil. I'm researching some other no sugar added brands. I've been able to keep my blood sugar stable with some small spikes after a meal. Do you stay flat with your diet? Thank you again!!! Kathy

It sounds like your doctor and diet have done wonders!! Kathy

 

[Lamont D]

It's not a long post. You are helping me understand. I haven't had the mixed meal test done yet, but my doctor is ordering it for me. I have cut out fruit for now and caffeine and have a light load of carbs paired with meat or cheese and some veggies and fats like almond butter or avocado. I know what you mean about hidden sugars. I saw my almond butter had palm oil. I'm researching some other no sugar added brands. I've been able to keep my blood sugar stable with some small spikes after a meal. Do you stay flat with your diet? Thank you again!!! Kathy

Simple answer yes!
That is my aim, and it, so no hypos.
The likes of palm oil, soya, and vegetable oils and even some olive oil, you should only use 100% virgin olive oil. They seem like the other ingredients in industrial production. Not to be trusted on a low carb diet.
It's good you have started to see some more stable BG levels.
Some non sugar or non added sugar brands can have stevia or aspartame or other sweetening agents. And with everything else, you need to check if you are ok with them.
Yes, it's a minefield out there, hence cooking from fresh only.
Keep asking
Keep learning.
Best wishes

 

[Kathy Marks]

Simple answer yes!
That is my aim, and it, so no hypos.
The likes of palm oil, soya, and vegetable oils and even some olive oil, you should only use 100% virgin olive oil. They seem like the other ingredients in industrial production. Not to be trusted on a low carb diet.
It's good you have started to see some more stable BG levels.
Some non sugar or non added sugar brands can have stevia or aspartame or other sweetening agents. And with everything else, you need to check if you are ok with them.
Yes, it's a minefield out there, hence cooking from fresh only.
Keep asking
Keep learning.
Best wishes

Thank you again Lamont. I'm asking and trying to learn. It gets me down though. I'm not off carbs completely, but have cut back and eating mixed meals. I miss the treats and of course my coffee and it's better than hypos.

 

[Lamont D]

Thank you again Lamont. I'm asking and trying to learn. It gets me down though. I'm not off carbs completely, but have cut back and eating mixed meals. I miss the treats and of course my coffee and it's better than hypos.

I drink (a lot) of black tea, and it doesn't affect my BG levels at all.
I'm not sure about the caffeine in the tea but you can try the coffee black, and see what happens, going cold turkey on coffee and carbs at the same time has got to be hard.
Tip. Drink more water, maybe have some salt to replace the salt you are not getting from the carbs you're not having. Check if you need vitamin b.
It is all balance of dietary nutritional needs. Ease yourself off carbs. Be easy on yourself.
Keep asking.

 

[Kathy Marks]

I drink (a lot) of black tea, and it doesn't affect my BG levels at all.
I'm not sure about the caffeine in the tea but you can try the coffee black, and see what happens, going cold turkey on coffee and carbs at the same time has got to be hard.
Tip. Drink more water, maybe have some salt to replace the salt you are not getting from the carbs you're not having. Check if you need vitamin b.
It is all balance of dietary nutritional needs. Ease yourself off carbs. Be easy on yourself.
Keep asking.

Again, thank you!!!