Enterally fed, reactive hypoglycaemia, things to orally try to raise blood sugar and keep stable

[Flee]

Hi, I am enterally fed for non-diabetic gastroparesis, and have repeated low blood sugar episodes. Was diagnosed with reactive hypoglycaemia with no treatment options. What is the best thing to try orally eat to raise blood sugar and keep it stably raised without having the reactive fall again? My blood sugar never goes above 9.2mmol, actually rare to go above 6-7mmol, never get hypers, but is erratic within normal range with multiple low blood sugar episodes in a day. Thanks

 

[Lamont D]

Hi @Flee merry Christmas and welcome to the forum.

Hi, I am enterally fed for non-diabetic gastroparesis, and have repeated low blood sugar episodes. Was diagnosed with reactive hypoglycaemia with no treatment options. What is the best thing to try orally eat to raise blood sugar and keep it stably raised without having the reactive fall again? My blood sugar never goes above 9.2mmol, actually rare to go above 6-7mmol, never get hypers, but is erratic within normal range with multiple low blood sugar episodes in a day.

Is it possible for more information?
What do you mean by enterally?
As Reactive Hypoglycaemia and gastroparesis are both food intolerance issues.
Both react to certain foods. RH is carbs and mostly lower endocrine conditions have certain foods to avoid.
And of course, individual needs and such to be taken into account.
So I cannot say, what the best foods are to maintain normal blood levels.
In general, the lower carbs you have, will not be a wrong move, in any way.
If you understand the science behind how RH effects you. Then something like small pieces of cheese or meat, fresh food is important. The additives etc in our food could be a trigger as well.
And if you do have a an episode, something like a bite of cheese, or a plain biscuit, will nudge it back up.
Too much and you will trigger another reaction, so be careful. Called a rebound effect.
Have you an endocrinologist?
What tests have you had for RH?
What was your last hba1c?
Are your fasting levels in normal levels?

Keep asking, it's important you learn about RH, and how food is important.
Best wishes.

 

[Flee]

Merry Christmas Lamont D, thank you for your welcome and response.

So, enterally fed is tube fed. I have a feeding tube that goes from my nostril to my jejenum (small intestine). I cannot adjust the carb content of my feed and am on the only feeds left for me to be on in the country. I feed over 18hours a day. My gastroparesis was idiopathic but is now thought to be due to the small nerve fibres being affected thus affecting my rate of digestion. What lower endocrine issue do you mean? I saw an endocrinologist but it was for cortisol level - think they were thinking Addisons or along the lines but my results were normal.

My latest Hba1c is 33mmol, but my alt level is raised. I was in hospital and had multiple hypos but they ignored me saying I have RH and they gave me IV 20% glucose, bg raised then dropped, then 10% raised higher and dropped, then 5% over 8 hours before bg it stabilised, and my liver became affected.

My doc said to have sugar to get my sugar level up as I can get “dangerously low,” but I get a reactive low, even with 1 or 2 Celebrations for instance. I never thought about having cheese, I could buy the tiny Cathedral City individual blocks to try. I’ve attached a couple of examples of my cgm read outs over 24hrs. I have prescribed CGM’s now to monitor, hence different cgm images. I was diagnosed from cgm readings and finger prick - can get as low as 1.1mmol think they ran bloods too, plus had all the symptoms when I was seen by a diabetes team but they won’t see me again as it’s RH, and the events witnessed in hospital when they messed up with glucose IV percentages.

Other than knowing to try keep carbs low, I don’t know much else about it and the mechanism, any insights please?

Thanks for your help

 

[Lamont D]

Merry Christmas Lamont D, thank you for your welcome and response.

So, enterally fed is tube fed. I have a feeding tube that goes from my nostril to my jejenum (small intestine). I cannot adjust the carb content of my feed and am on the only feeds left for me to be on in the country. I feed over 18hours a day. My gastroparesis was idiopathic but is now thought to be due to the small nerve fibres being affected thus affecting my rate of digestion. What lower endocrine issue do you mean? I saw an endocrinologist but it was for cortisol level - think they were thinking Addisons or along the lines but my results were normal.

My latest Hba1c is 33mmol, but my alt level is raised. I was in hospital and had multiple hypos but they ignored me saying I have RH and they gave me IV 20% glucose, bg raised then dropped, then 10% raised higher and dropped, then 5% over 8 hours before bg it stabilised, and my liver became affected.

My doc said to have sugar to get my sugar level up as I can get “dangerously low,” but I get a reactive low, even with 1 or 2 Celebrations for instance. I never thought about having cheese, I could buy the tiny Cathedral City individual blocks to try. I’ve attached a couple of examples of my cgm read outs over 24hrs. I have prescribed CGM’s now to monitor, hence different cgm images. I was diagnosed from cgm readings and finger prick - can get as low as 1.1mmol think they ran bloods too, plus had all the symptoms when I was seen by a diabetes team but they won’t see me again as it’s RH, and the events witnessed in hospital when they messed up with glucose IV percentages.

Other than knowing to try keep carbs low, I don’t know much else about it and the mechanism, any insights please?

Thanks for your help

Ok now I get it!
I was confused, with the enterally thingy.
I see, now why you are asking.
I cannot believe that there is only one feed.
And the hypos keep coming.
your graphs show multiple hypos, through the day,
And more as the day goes on.

I definitely think it's the feed itself. Because of the feed with its carb content, and the rapidity of the glucose, does trigger the hormonal response. The insulin may be late or maybe because of insulin resistance, tho, I'm not seeing it. The insulin drives down BG levels. And it's a rollercoaster ride, of up and down as the glucose feed, insulin response and from other hormones keeps causing issues. As you feed costantly, the response is also constant.. With high levels of insulin in your blood, did they test insulin levels? or give you any meds?
Too much insulin in your blood and liver is not good.

I'm racking my brains to suggest something other than adding more carbs, if only quite low to keep the BG levels above 3.5mmols. But I'm not sure you can add.

Usually, When first diagnosed, the doctor/dietician ask you to eat every three hours to stop the hypos, but it doesn't work, and you tend to eat too much.

And I understand why the endocrinologist, is more concerned with your other conditions, rather than the RH.
it must be very difficult to control.

I think it will be a question of how to stop going hypo and trying various things to help with that.
And I would also question your doctors about the feed. A lower carb feed would really help.

I'm sorry I can't help more. I have never come across something like this.

Merry Christmas.

 

[Flee]

Thanks for your help, you’ve been great!

They’ve never tested my insulin levels, actually, that’s something I’ll ask my gp to do. I thought the feed too, but the carb content for it is 189g which is less than daily recommended amount of carbs for anyone to have. I am constantly fatigued and think it’s because of this rollercoaster mismatch. I have really low body weight as well, BMI below scale and struggle to put weight on even with 1800+ calories a day, so think it’s all linked.

I’ll try your cheese suggestion to see if that does anything different.

Thanks again, and Merry Christmas!

 

[Lamont D]

Thanks for your help, you’ve been great!

They’ve never tested my insulin levels, actually, that’s something I’ll ask my gp to do. I thought the feed too, but the carb content for it is 189g which is less than daily recommended amount of carbs for anyone to have. I am constantly fatigued and think it’s because of this rollercoaster mismatch. I have really low body weight as well, BMI below scale and struggle to put weight on even with 1800+ calories a day, so think it’s all linked.

I’ll try your cheese suggestion to see if that does anything different.

Thanks again, and Merry Christmas!

Hi again, that is a very high amount of carbs for someone who has been diagnosed with RH.
And again, if you are intolerant, you should avoid as much as possible.
as I said, I was lactose intolerance since young and the doctors insisted I stayed away from dairy.
so why is it different with any level of intolerance to wheat, grains, rice, pasta, even some vegetables.
it doesn't make sense.
same as if you know your feed is gonna cause hypoglycaemia.
it is not logical.
your doctors are prioritising your other issue.
but ignoring the RH will not help especially with the hypoglycaemic symptoms and threat of very low by levels.

Hope the cheese works.
Best wishes.

 

[EllieM]

Was diagnosed with reactive hypoglycaemia with no treatment options.

Was this done by an endocrinologist? There are other causes for low bg other than RH and some of them do have treatment options....

 

[fireweed]

Thanks for your help, you’ve been great!

They’ve never tested my insulin levels, actually, that’s something I’ll ask my gp to do. I thought the feed too, but the carb content for it is 189g which is less than daily recommended amount of carbs for anyone to have. I am constantly fatigued and think it’s because of this rollercoaster mismatch. I have really low body weight as well, BMI below scale and struggle to put weight on even with 1800+ calories a day, so think it’s all linked.

I’ll try your cheese suggestion to see if that does anything different.

Thanks again, and Merry Christmas!

I was diagnosed with reactive hypoglycemia this summer and I've been wearing a continuous glucose monitor this fall to try to figure out what foods help. So far I've found that consistently eating whole fat yogurt, cheese, beans, fermented foods, nuts and seeds, vegetables - lots of fiber, about 90g a day - and not eating any grain flour or sugar helps me feel good. Now I need to figure out why and try to put some weight on. I hope you start feeling better soon!

Edit to add: If you do want to experiment with adding fiber, soluble fiber is what has been helpful to me (insoluble fiber doesn't help at all). It also takes a few days of eating as above for me blood sugar to stabilize when it's really unstable from eating bread or something, so it might take a few days to see results.

 

[Lamont D]

I was diagnosed with reactive hypoglycemia this summer and I've been wearing a continuous glucose monitor this fall to try to figure out what foods help. So far I've found that consistently eating whole fat yogurt, cheese, beans, fermented foods, nuts and seeds, vegetables - lots of fiber, about 90g a day - and not eating any grain flour or sugar helps me feel good. Now I need to figure out why and try to put some weight on. I hope you start feeling better soon!

Edit to add: If you do want to experiment with adding fiber, soluble fiber is what has been helpful to me (insoluble fiber doesn't help at all). It also takes a few days of eating as above for me blood sugar to stabilize when it's really unstable from eating bread or something, so it might take a few days to see results.

Hi @fireweed and welcome to our forum.
It is really important that a very low carb intake helps you with the reactive effects of the condition. I myself had to experiment and use a glucometer to discover a lot of what foods to really avoid.
I have been at this now, for quite a while, and I still struggle struggle with my weight.
I don't eat a lot, but it is all fresh food, no factory made food.
And I cook it myself.
I eat a lot of meat, and it has advised to eat the fat, natural saturated fats, that will help satiate you and you need natural protein of course and to gain weight, with low carbs, you may need more protein and natural fats.
And I'm doing really well with intermittent fasting and as few carbs as there is in the food I have.
Full fat foods especially dairy, is best for you, if you can tolerate them, I can't I'm intolerant to dairy, lactose intolerance. As I am to the heavy carbs you mentioned, grains and such. Beware of some vegetables tho.
Starchy carbs such as root veg, spuds and such.

Can I ask, what tests have you had?
Have you an endocrinologist?
A dietician?
Are you aware of why you go hypo?
How do you correct a hypo?
Have you any other conditions?
On any meds?
Anything else?
He free to ask anything, I will try and help.
Best wishes.

 

[fireweed]

Hi @fireweed and welcome to our forum.
It is really important that a very low carb intake helps you with the reactive effects of the condition. I myself had to experiment and use a glucometer to discover a lot of what foods to really avoid.
I have been at this now, for quite a while, and I still struggle struggle with my weight.
I don't eat a lot, but it is all fresh food, no factory made food.
And I cook it myself.
I eat a lot of meat, and it has advised to eat the fat, natural saturated fats, that will help satiate you and you need natural protein of course and to gain weight, with low carbs, you may need more protein and natural fats.
And I'm doing really well with intermittent fasting and as few carbs as there is in the food I have.
Full fat foods especially dairy, is best for you, if you can tolerate them, I can't I'm intolerant to dairy, lactose intolerance. As I am to the heavy carbs you mentioned, grains and such. Beware of some vegetables tho.
Starchy carbs such as root veg, spuds and such.

Can I ask, what tests have you had?
Have you an endocrinologist?
A dietician?
Are you aware of why you go hypo?
How do you correct a hypo?
Have you any other conditions?
On any meds?
Anything else?
He free to ask anything, I will try and help.
Best wishes.

Hello @Lamont D. I have reactive hypoglycemia and hypothyroidism. My first test showing something was off was when I had a routine 1 hour glucose tolerance test and the result was low, but I didn't get diagnosed until five years later when my endocrinologist gave me a sample CGM after I tested negative for everything else that could explain my 'low' symptoms. I've been working with a dietician since then. I go low after eating carbs. I also have found that correcting lows with cheese instead of carbs, as is recommended for diabetics, works well for me. So I second that recommendation.

I commented on @Flee s thread because I can tolerate some simple carbs if I eat enough fat and soluble fiber with it.
My hypothesis is that adding a soluble fiber supplement like Inulin in addition to cheese might reduce the number of lows that that poster is getting. If their doctors think that would be ok with their other conditions.

 

[Lamont D]

Only a one hour test?

Hello @Lamont D. I have reactive hypoglycemia and hypothyroidism. My first test showing something was off was when I had a routine 1 hour glucose tolerance test and the result was low, but I didn't get diagnosed until five years later when my endocrinologist gave me a sample CGM after I tested negative for everything else that could explain my 'low' symptoms. I've been working with a dietician since then. I go low after eating carbs. I also have found that correcting lows with cheese instead of carbs, as is recommended for diabetics, works well for me. So I second that recommendation.

I commented on @Flee s thread because I can tolerate some simple carbs if I eat enough fat and soluble fiber with it.
My hypothesis is that adding a soluble fiber supplement like Inulin in addition to cheese might reduce the number of lows that that poster is getting. If their doctors think that would be ok with their other conditions.

at least they followed up with other tests.
My glucose tolerance test was five hours and I have had six of those for testing a drug,
I can't tolerate carbs at all.
Can you fast?
How does the hypothyroidism effect your blood glucose levels?
Or is the condition in control.
Cos, I have had a theory with the first phase hormonal response, that not only insulin, but cortisol, adrenalin etc can imbalance the reactive part of the overshoot and the rapidity of going hypo. If that makes sense.
As would insulin resistance.
I know from the tests that my first phase insulin is very weak but when the reaction/overshoot happens, it floods excessively the glucose.

Trying anything such as inulin, has to be done, if other supplements don't work.
And correcting hypos if you need to, with cheese is preferable.
I don't want the hypos, so I am in ketosis as much as possible.
Or in normal BG levels, continuously to stop the trigger of the reaction.

Best wishes.

 

[fireweed]

Only a one hour test?

at least they followed up with other tests.
My glucose tolerance test was five hours and I have had six of those for testing a drug,
I can't tolerate carbs at all.
Can you fast?
How does the hypothyroidism effect your blood glucose levels?
Or is the condition in control.
Cos, I have had a theory with the first phase hormonal response, that not only insulin, but cortisol, adrenalin etc can imbalance the reactive part of the overshoot and the rapidity of going hypo. If that makes sense.
As would insulin resistance.
I know from the tests that my first phase insulin is very weak but when the reaction/overshoot happens, it floods excessively the glucose.

Trying anything such as inulin, has to be done, if other supplements don't work.
And correcting hypos if you need to, with cheese is preferable.
I don't want the hypos, so I am in ketosis as much as possible.
Or in normal BG levels, continuously to stop the trigger of the reaction.

Best wishes.

The one hour test was a routine gestational diabetes test. And interesting it only came out low the second time I took it after starting levothyroxine for my hypothyroidism. My hypothyroidism is under control, but I'm not sure how it affects my blood glucose levels. I had been thinking insulin resistance as well particularly since my mom just got a prediabetes diagnosis. I'll have to research your idea more.

Yes, I can fast. That's actually why I need to gain weight.. Pre diagnoses I figured out that if I skipped lunch I would be functional in the afternoon and that worked well until I lost too much weight. Oops.

Whether I can handle carbs at all has been interesting too. If I have recently eaten a high carb meal, then my blood sugar will rollercoaster for whatever amount or type of carbs I eat for several days. However, if I've been consistently eating mostly fat, protein, and fiber for a few days, then I can have some carbs without overshooting on insulin.

There doesn't seem to be much research at all on the condition, so there are lots of interesting things to figure out.

 

[Lamont D]

The one hour test was a routine gestational diabetes test. And interesting it only came out low the second time I took it after starting levothyroxine for my hypothyroidism. My hypothyroidism is under control, but I'm not sure how it affects my blood glucose levels. I had been thinking insulin resistance as well particularly since my mom just got a prediabetes diagnosis. I'll have to research your idea more.

Yes, I can fast. That's actually why I need to gain weight.. Pre diagnoses I figured out that if I skipped lunch I would be functional in the afternoon and that worked well until I lost too much weight. Oops.

Whether I can handle carbs at all has been interesting too. If I have recently eaten a high carb meal, then my blood sugar will rollercoaster for whatever amount or type of carbs I eat for several days. However, if I've been consistently eating mostly fat, protein, and fiber for a few days, then I can have some carbs without overshooting on insulin.

There doesn't seem to be much research at all on the condition, so there are lots of interesting things to figure out.

Back when I was diagnosed even my endocrinologist who recognised the symptoms and why a non diabetic would go hypo cos of food???? He was intrigued and had to do research of his own. We had some interesting conversations about carbs. Even after a couple of years and my health improvement, he kept on with, we must find some carbs. But we didn't. And he could see that the evidence of my food diary and the testing of them carbs was the reason for the the reactive symptoms. He actually took me through the science of it but even some of the thinking wasn't quite right. But he did save my life.
The reason I had six extended oral glucose tolerance test was as a volunteer to see if a drug called sitagliptin helped with first phase, again to see if I could tolerate some carbs. The sitagliptin did help with the first phase but I still went hypo. It did help with lowering the spike, but it still triggered the overshoot of Insulin, that drove down into hypoglycaemia.
I did learn so much. And it was the basis of a tailored dietary regime by me for me.
I am different to you, in some ways cos I have lactose intolerance, so I can't have butter, cheese, which are very good for low carb. And I can't eat certain vegetables either, I have loads of salad but can't abide cooked veg.
So I have to be so careful, and only cooking fresh food, that I know doesn't contain vegetable fats or palm oil, etc, additives, and other rubbish they throw into food these days.
And I only use natural saturated fats to cook with and most better than gammon and egg fried. Some mushrooms, and I can't but you could fry that in butter. Wonderous!

Fasting is useful as a tool to get your level of hormones down, especially insulin. And even overnight, your homeostasis levels, as well as your BG levels are in normal levels. And the longer you are in normal levels your body has the time to be in a better place. I won't eat after seven, cos I know that I won't have a hypo around going to bed. I eat in a window from mid afternoon to around 7pm.
but I don't need weight gain.

Discovering your own weight management is down to that balance of protein and fats.
Further to the research, there isn't much anywhere. I did get some from U.S.universities, but the majority of it not all follow the medical books. And those books are not logical in the reasons of the treatment never mind the science of how It happens.

Keep asking.
So interesting.

 

[fireweed]

Oh! Do you have any recommendations for things that would work well in a school lunch box? Things that are ok cold.

The reason I kept pushing for diagnosis instead of giving up is that I'm pretty sure my five year old has it too. And she has most of the same dietary requirements as you. The only kinds of dairy she tolerates are hard cheeses and butter, she loves fresh veggies and not cooked, she doesn't tolerate food additives or peppers well, and loves red meat.
I'm figuring out things I can cook at home for her, but lunchboxes are still hard. Any ideas?

 

[Lamont D]

Oh! Do you have any recommendations for things that would work well in a school lunch box? Things that are ok cold.

The reason I kept pushing for diagnosis instead of giving up is that I'm pretty sure my five year old has it too. And she has most of the same dietary requirements as you. The only kinds of dairy she tolerates are hard cheeses and butter, she loves fresh veggies and not cooked, she doesn't tolerate food additives or peppers well, and loves red meat.
I'm figuring out things I can cook at home for her, but lunchboxes are still hard. Any ideas?

A bakery by us does a great salad box for kids.
Or babybel cheeses.
Or some assortment of all fresh stuff.
Some nuts are good, full fat Greek yoghurt with some berries.

It will be hard to appease a young un with a school box.
I had major issues with school dinners until my doctor sent the school a doctor's letter to avoid dairy.
And that took some doing to get some food, mainly just the meat or fish.

Childhood hypoglycaemia is quite common, but because, not many medical staff realise what it is of how to deal with it. They often tend to say it's normal and dismiss it.
Hopefully, like the majority of childhood ailments, they do grow out of them.
I have a big family, and none before or since, have had RH, or anything except T2, like it.
As I have been told more than once by my GP at the time and other doctors, I am weird.
With a weird condition. It is rare, but as it becomes more known, less so since my endocrinologist informed me that I was not diabetic and had an idea what it could be twelve years ago.

Keep asking
Good luck with the school lunchbox.

 

[fireweed]

My current theory is that it's because I had unregulated RH while pregnant and nursing. Like how mother's with unregulated gestational diabetes increases the changes of the child having insulin resistance. Hopefully she can grow out of it though as you said. It's making things hard for her now.

 

[Lamont D]

My current theory is that it's because I had unregulated RH while pregnant and nursing. Like how mother's with unregulated gestational diabetes increases the changes of the child having insulin resistance. Hopefully she can grow out of it though as you said. It's making things hard for her now.

if I remember, the times when my parents and three older brothers would eat all sorts of dairy or some of the other sweet things, and I was called a fussy .......!
And back in the day, my parents couldn't really afford to pick between, affordable or something just for me. So I did have to do without. It's not that I didn't try, but vomiting and being a ghostly shade of white afterwards, gave them an idea, that I was different. Cereal was eaten reluctantly, Christmas dinner and treats were always fun.
eating out was a laugh, in Indian restaurant, Chinese etc.
who puts butter on the toast when you have beans on toast? I certainly decorated the coffee table......!
It is not easy or safe out there.
I actually found that travelling around, staying at the right hotel, it was a lot easier than I did many years ago.
And going to different countries, some not all, understand and help you with food choice. And fresh food is certainly not doctored like some established restaurants or outlets, junk foods and such.
Asking for a salad in a pub, when pre prepared and covered with oils, dressings is not what I asked for etc.
I eventually got used to asking the head chef to help me with choice, and if you don't ask, you don't get fresh food. I usually found them accommodating.

Did you have RH before becoming pregnant?
Or because of it?

I ask because whilst doing research, I noticed that some doctors and university papers, we're interested in gestational diabetes, were the pregnancy was having symptoms of not only diabetes but RH As well.
My endocrinologist suggested to me when I asked, it wasn't the symptoms as such but the outcomes from the episodes of hypoglycaemia when not taking meds. That was the difference. The hypos, not on meds or on insulin meds. Which got confusing and misdiagnosed in some.
That is awful.

Best wishes
Keep asking.

 

[fireweed]

I'm glad your found a diet that works for you. It sounds like it's been a real journey to get there.

I'm not exactly sure when my RH symptoms started. Maybe after my first pregnancy when my thyroid stopped working or maybe during my second pregnancy - I wasn't sleeping much during those years, so it's kind of a blur - or maybe I always had it to some extent, but it got more extreme after having to supply energy for two bodies at the same time.

It looks like I first complained about my symptoms to my doctor shortly after my second pregnancy, but I had that low glucose tolerance test during the second pregnancy, so it must have been going on before that.

 

[Lamont D]

I'm glad your found a diet that works for you. It sounds like it's been a real journey to get there.

I'm not exactly sure when my RH symptoms started. Maybe after my first pregnancy when my thyroid stopped working or maybe during my second pregnancy - I wasn't sleeping much during those years, so it's kind of a blur - or maybe I always had it to some extent, but it got more extreme after having to supply energy for two bodies at the same time.

It looks like I first complained about my symptoms to my doctor shortly after my second pregnancy, but I had that low glucose tolerance test during the second pregnancy, so it must have been going on before that.

Interesting about not remembering that time when you were getting the repeated hypos.
there is around three years that are just not totally there from about 09 to 12, when I was in my hypo hell period.
I am an avid reader, and when I have re-read those books, it was like reading for the first tme, family matters, only the outstanding births etc can I remember. I can remember certain places but not what happened. But since, it seems, tho I can't remember those that have gone,, I can remember more, more clearly.
I was just going through the motions of living.
I actually believe my symptoms and the condition started about a decade before that.

And I'm not going back there.

So it was just a breast of chicken for my evening meal.

Best wishes.
Keep asking
Keep learning.