Late dumping syndrome

[lesley1966]

Hi

I have been diagnosed with late dumping syndrome, by a gastroenterologist.

Has anyone else had this diagnosis? I have had Type 1 for over 40 years, but have never had gastro surgery, and the only info I can find on dumping syndrome describes it as a post-surgical complication after (most commonly) surgery for gastric ulcers.

Blood glucose control is very difficult as the "dumping" of undigested food into my small intestine is completely unpredictable. Acarbose doesn't seem to have helped, just made me more windy & bloated. I think the only solution will be small, low carb meals.

Has anyone else with Type 1 had this diagnosis without having had gastric surgery?

 

[Osidge]

Hi Lesley

Welcome to the Forum. I do not have dumping syndrome but you might find this helpful as to how to deal with it.

http://gdumping.blogspot.com/

Regards

Doug

 

[mehdave]

Dumping is something I have became familiar with since my gastric bypass same sort of problem. The easiest way to deal with it according to all the stuff I have read is to have 4 to 5 smaller meals over the day instead of 3. Eat very slowly each meal should take at least 20 minutes and be no more than 200grams.

Now obviously thats for bypass patients but it certainly cannot hurt to give it a try with your current diet just spread more over the day. Also to aid digestion make sure you chew at least 15 times before swallowing. The issue that normally caused food to be pushed out of the stomach to quickly is drinking while eating especially with gassy drinks.

Do you drink while eating? if so try not having a drink for 30 mins before and after a meal.

If these dont work then I suggest seeking advice from a professional may be needed. As so far they have worked for me to avoid dumping to my intesting and my stomach is the size of an egg now give it a try

 

[Babsuk]

Hi, yes I have late dumping syndrome, I have not got diabetes nor had surgery. I did have intentional weight lose which I believe started this condition off.
it only happens early mornings and I have extreme hypoglycaemia suger levels drop below 3/ 2.5 etc
I have tried eating 2 -3 hourly but it doesn't work, the only thing that works is, I can't get up before 8am, I then have to sit down for breakfast, then sit for an hour. Then I can go out, if I got up before 8am and started chores or work straight away I would have full blown symptoms. I cant work during the morning so I now I only work late shift at the hospital.
its a very isolating syndrome, people dont understand that you have to eat regularly.
Im just in the process of researching tablets but there doesn't seem to much support for people like us. I would be happy to hear from others who have the same condition as me

 

[mark8805]

Hi, yes I have late dumping syndrome, I have not got diabetes nor had surgery. I did have intentional weight lose which I believe started this condition off.
it only happens early mornings and I have extreme hypoglycaemia suger levels drop below 3/ 2.5 etc
I have tried eating 2 -3 hourly but it doesn't work, the only thing that works is, I can't get up before 8am, I then have to sit down for breakfast, then sit for an hour. Then I can go out, if I got up before 8am and started chores or work straight away I would have full blown symptoms. I cant work during the morning so I now I only work late shift at the hospital.
its a very isolating syndrome, people dont understand that you have to eat regularly.
Im just in the process of researching tablets but there doesn't seem to much support for people like us. I would be happy to hear from others who have the same condition as me

Hi, I am based in the UK and I am 13 years post op having had a full bypass, about 4 years ago I started to feel really unwell after eating and started to sweat a lot, so instead of going on the internet with symptoms I trawled the bariatric forums looking for anyone that had my symptoms.

Found a few people with the same symptoms, so contacted a couple of them and they told me they were suffering from Late Dumping Syndrome.

The symptoms I get are a feeling of being unwell and I start sweating profusely, sometimes for hours other times for days, my last bout was over Christmas of 2022 when I sweated for 4 days solid and lost 20lbs in weight as I was not taking anything in, not even water as that made me dump too.

Initially I went to see my GP and told her about the symptoms I was having and that I was pretty sure that I was suffering from Late Dumping syndrome, she had never heard of it so she referred me to my nearest weight loss clinic, told them my thoughts and nothing was said, what they did say was that I needed various tests so that they could move forward.

I had various tests all proving negative, then the pandemic hit and all hospital appointments were cancelled, I got taken into hospital by ambulance on a number of occasions with dreadful sweating only to be told that all my vitals were reading as normal even my temperature, I did explain to the Doctors in A & E that I had had a stomach bypass some years ago, the Doctors did not know what to do so they told me to go home as there was nothing wrong with me, after the third time I gave up going to hospital and just suffered the sweating, just as a note the sweating I had was ice cold sweating and that caused my body to shiver, I have a thermometer at home and all it kept saying was that my skin temp was too low to read.

After 2 years and no further forward I started smoking weed, I also found a website that made THC liquid for Vape machines so I started smoking that and eventually it sent me mad with hallucinations and all sorts of mental things were going on, I was taken into hospital again and it took 2 weeks for me to start thinking like my old self, the other thing that happened to me was that I stopped eating for 10 weeks as I have never felt hungry since my bypass, I ended up loosing 35 lbs in weight.

The day I returned home there was a letter from the hospital waiting for me from the weight loss clinic and it told me that after all the tests and a conference of doctors and health professionals that I indeed was suffering from Late dumping Syndrome.

The treatment for this is a tablet called Acarbose, you start with 50mg 3 times a day before eating and initially the sweating stopped. After 2 weeks it came back again so the treatment is to increase the Acarbose to a maximum of 200mg 3 times a day before you eat and that is where I am at the moment, the sweating has not stopped, my consultant told me that if the tablets do not work then there are other drugs I could use with quite nasty side effects and after that a reversal of the bypass would be considered, I have multiple health problems all steming from a spinal injury sustained while I was the Armed Forces, as I am writing this at 9 in the morning I am sweating and it will go on all day in varying degrees, to say I am frustrated with it all is an understatement.

 

[Lamont D]

Hi, I am based in the UK and I am 13 years post op having had a full bypass, about 4 years ago I started to feel really unwell after eating and started to sweat a lot, so instead of going on the internet with symptoms I trawled the bariatric forums looking for anyone that had my symptoms.

Found a few people with the same symptoms, so contacted a couple of them and they told me they were suffering from Late Dumping Syndrome.

The symptoms I get are a feeling of being unwell and I start sweating profusely, sometimes for hours other times for days, my last bout was over Christmas of 2022 when I sweated for 4 days solid and lost 20lbs in weight as I was not taking anything in, not even water as that made me dump too.

Initially I went to see my GP and told her about the symptoms I was having and that I was pretty sure that I was suffering from Late Dumping syndrome, she had never heard of it so she referred me to my nearest weight loss clinic, told them my thoughts and nothing was said, what they did say was that I needed various tests so that they could move forward.

I had various tests all proving negative, then the pandemic hit and all hospital appointments were cancelled, I got taken into hospital by ambulance on a number of occasions with dreadful sweating only to be told that all my vitals were reading as normal even my temperature, I did explain to the Doctors in A & E that I had had a stomach bypass some years ago, the Doctors did not know what to do so they told me to go home as there was nothing wrong with me, after the third time I gave up going to hospital and just suffered the sweating, just as a note the sweating I had was ice cold sweating and that caused my body to shiver, I have a thermometer at home and all it kept saying was that my skin temp was too low to read.

After 2 years and no further forward I started smoking weed, I also found a website that made THC liquid for Vape machines so I started smoking that and eventually it sent me mad with hallucinations and all sorts of mental things were going on, I was taken into hospital again and it took 2 weeks for me to start thinking like my old self, the other thing that happened to me was that I stopped eating for 10 weeks as I have never felt hungry since my bypass, I ended up loosing 35 lbs in weight.

The day I returned home there was a letter from the hospital waiting for me from the weight loss clinic and it told me that after all the tests and a conference of doctors and health professionals that I indeed was suffering from Late dumping Syndrome.

The treatment for this is a tablet called Acarbose, you start with 50mg 3 times a day before eating and initially the sweating stopped. After 2 weeks it came back again so the treatment is to increase the Acarbose to a maximum of 200mg 3 times a day before you eat and that is where I am at the moment, the sweating has not stopped, my consultant told me that if the tablets do not work then there are other drugs I could use with quite nasty side effects and after that a reversal of the bypass would be considered, I have multiple health problems all steming from a spinal injury sustained while I was the Armed Forces, as I am writing this at 9 in the morning I am sweating and it will go on all day in varying degrees, to say I am frustrated with it all is an understatement.

Hi @mark8805 ,
I have a condition which is called 'Late Reactive Hypoglycaemia', and without going through the science, it is very similar, the symptoms are different for everyone, but the illness is awful.
I have read up on glucose dumping or dumping syndrome after surgrry, the condition is becoming more common.
With RH, and we do have a sub forum, which covers a wide range of similar conditions. Click on forums, scroll down, you will see Reactive Hypoglycaemia. Please have a read. RH is because I am intolerant to many foods and I am surprised that your consultant hasn't mentioned dietary recommendations.
I have heard of using acerbose to control the carbs through digestion, but I have also seen that it doesn't effect anything, it doesn't help. It may for you but there are different meds or treatment that is more likely to help.

Have you got a blood glucose monitor? Or been informed about the reason for the dumping?

Keep safe.

 

[mark8805]

Hi @mark8805 ,
I have a condition which is called 'Late Reactive Hypoglycaemia', and without going through the science, it is very similar, the symptoms are different for everyone, but the illness is awful.
I have read up on glucose dumping or dumping syndrome after surgrry, the condition is becoming more common.
With RH, and we do have a sub forum, which covers a wide range of similar conditions. Click on forums, scroll down, you will see Reactive Hypoglycaemia. Please have a read. RH is because I am intolerant to many foods and I am surprised that your consultant hasn't mentioned dietary recommendations.
I have heard of using acerbose to control the carbs through digestion, but I have also seen that it doesn't effect anything, it doesn't help. It may for you but there are different meds or treatment that is more likely to help.

Have you got a blood glucose monitor? Or been informed about the reason for the dumping?

Keep safe.

Thanks for your reply, too be honest with you I am not sure that this is food related as I can eat as much chocolate as I want to without any reaction whatsoever, I do know that when I get anxious that starts it off, however over the last couple of days I have been simmering, feeling hot verging on sweating without going into a full sweat and I cannot put my finger on why it has been happening over the last couple of days, I do suffer quite bad depression, my main problem is that I have a spinal injury from a so called ‘unsuccessful operation’ on my back some 30 years ago whilst I was in the Army, I take, along with the Acarbose upwards of 50 tablets a day, my health problems are wide and varied, fitted with a permanent catheter, came out of my 3 week stay in hospital with real anxiety so it could be a number of things, next time I go to Salford Royal I am going to tell the consultant about food not starting it off, he did suggest reversing the bypass, that is the last thing I want and there is no point if it is not food related, I have stuck to the eating regime that comes with bypass surgery and have kept the w§eight off and stable for 10 years, will look at the other posts you have suggested and get back to you or post on that forum, thanks for your reply been very helpful, my name is Mark and I live in Wigan for my sins!!

 

[Lamont D]

I'm not too far away from you.
I do sympathise with your situation, my other half has three crumbling discs with sciatica nerve trapped, with type two, copd, and other associated conditions.
I myself have skeletal issues, neck, shoulder and hands arthritic.
I understand the specialist you do have but the dumping may be understood better by a specialist endocrinologist. And you should be able to get a referral.

Dumping symptoms may be caused by the meds, but as you haven't said. When and how the symptoms start.

But because the food goes quicker into the blood as glucose, there is a spike of levels, and unless the insulin response can cope, more insulin is needed. The more times you eat, the rollercoaster ride of symptoms persist.

If I said to you that the wife is in the front room, heating full on. I'm sitting in the back room with the back door open. That is what it used to be like!

Have you insisted on a meds review, as the combination may have something to do with the over sweating.

Keep safe

 

[mark8805]

I'm not too far away from you.
I do sympathise with your situation, my other half has three crumbling discs with sciatica nerve trapped, with type two, copd, and other associated conditions.
I myself have skeletal issues, neck, shoulder and hands arthritic.
I understand the specialist you do have but the dumping may be understood better by a specialist endocrinologist. And you should be able to get a referral.

Dumping symptoms may be caused by the meds, but as you haven't said. When and how the symptoms start.

But because the food goes quicker into the blood as glucose, there is a spike of levels, and unless the insulin response can cope, more insulin is needed. The more times you eat, the rollercoaster ride of symptoms persist.

If I said to you that the wife is in the front room, heating full on. I'm sitting in the back room with the back door open. That is what it used to be like!

Have you insisted on a meds review, as the combination may have something to do with the over sweating.

Keep safe

The team I am under at Salford Royal is led by a Professor of Endocrinology, he knows all about my medical problems, drugs and all he only sees his patients once a year face to face, he has prioritised my case and sees me personally every 6 months in fact after my latest sweating but I called his secretary and within 24 hours I was contacted by his team the next day and he saw me personally the next day so I have no doubt that his team is taking my case extremely seriously. Will keep in touch and post with anything else they come up with.

 

[Lamont D]

The team I am under at Salford Royal is led by a Professor of Endocrinology, he knows all about my medical problems, drugs and all he only sees his patients once a year face to face, he has prioritised my case and sees me personally every 6 months in fact after my latest sweating but I called his secretary and within 24 hours I was contacted by his team the next day and he saw me personally the next day so I have no doubt that his team is taking my case extremely seriously. Will keep in touch and post with anything else they come up with.

I have the same with my specialist endocrinologist who is also a professor at Manchester University.
He saved my life.
Next time, ask him, if an insulin levels test would help his investigations. Because if you are having similar symptoms etc. Then it might be the insulin levels causing some of the symptoms. I too had normal hba1c and fasting levels with a normal blood panel results all normal, it was only after certain foods would trigger excess insulin that causes the hypoglycaemia. You could be similar but not go hypo. If you are susceptible to prediabetic or diabetic levels but your fasting and hba1c levels are normal, the only reason you might be crashing, the symptoms, is insulin. And your meds and other conditions will exacerbate your symptoms.

Best wishes.

 

[hellobear007]

Hi

I have been diagnosed with late dumping syndrome, by a gastroenterologist.

Has anyone else had this diagnosis? I have had Type 1 for over 40 years, but have never had gastro surgery, and the only info I can find on dumping syndrome describes it as a post-surgical complication after (most commonly) surgery for gastric ulcers.

Blood glucose control is very difficult as the "dumping" of undigested food into my small intestine is completely unpredictable. Acarbose doesn't seem to have helped, just made me more windy & bloated. I think the only solution will be small, low carb meals.

Has anyone else with Type 1 had this diagnosis without having had gastric surgery?

Hi, I am waiting to see my Gastroenterologist in May as I strongly believe I have dumping syndrome.

I am type 1 for 25 years with other complications. Gastric emptying studies already show that I have erratic emptying ( sometimes delayed sometimes rapid ) , however since COVID all of my regular appointments dried up so I am left in a kind of limbo waiting for this next appointment.

The symptoms I experience with this are so severe I have been blue lighted to hospital 3 times now. Each time dismissed as Gastroenteritis ( which I have had before and it was never this awful or frequent )

It starts for me with sulphur burps. That is how I know I'm going to be poorly. Then the severe hypoglycemia, low blood pressure, diarrhea and vomiting, extreme sweating ( to the point I got hypothermia) , muscle cramps and weakness. I can't even hold myself upright on the toilet. I have been so incapacitated I have been unable to call for help the last couple of times it happened and I honestly lay on my bathroom floor so poorly that I hoped that if it was the end then it would be soon.

As you already most likely know, treating a hypo when in such a state is virtually impossible. It is very frightening.

 

[Lamont D]

Hi, I am waiting to see my Gastroenterologist in May as I strongly believe I have dumping syndrome.

I am type 1 for 25 years with other complications. Gastric emptying studies already show that I have erratic emptying ( sometimes delayed sometimes rapid ) , however since COVID all of my regular appointments dried up so I am left in a kind of limbo waiting for this next appointment.

The symptoms I experience with this are so severe I have been blue lighted to hospital 3 times now. Each time dismissed as Gastroenteritis ( which I have had before and it was never this awful or frequent )

It starts for me with sulphur burps. That is how I know I'm going to be poorly. Then the severe hypoglycemia, low blood pressure, diarrhea and vomiting, extreme sweating ( to the point I got hypothermia) , muscle cramps and weakness. I can't even hold myself upright on the toilet. I have been so incapacitated I have been unable to call for help the last couple of times it happened and I honestly lay on my bathroom floor so poorly that I hoped that if it was the end then it would be soon.

As you already most likely know, treating a hypo when in such a state is virtually impossible. It is very frightening.

As a T1, you should have a medical team, that should be finding answers for you. Getting specialist help for the symptoms you show.
I don't have a clue about what help you need, and if you have been tested and proven to get dumping, then whatever specialist you need for further tests, you should insist on getting.
Dumping, as with other conditions can be controlled with dietary changes, but I'm reluctant to advise further because of your other conditions.
I hope you start getting answers soon.

Best wishes

 

[hellobear007]

As a T1, you should have a medical team, that should be finding answers for you. Getting specialist help for the symptoms you show.
I don't have a clue about what help you need, and if you have been tested and proven to get dumping, then whatever specialist you need for further tests, you should insist on getting.
Dumping, as with other conditions can be controlled with dietary changes, but I'm reluctant to advise further because of your other conditions.
I hope you start getting answers soon.

Best wishes

Thanks , it feels like a battle to contact anyone right now. Ive spent the past 6 weeks trying to get hold of my diabetes clinic for advice on ketones and my insulin needs increasing threefold! Voice messages and emails are going unanswered.

Today I have sent an email to my GP requesting referral to a diabetes clinic elsewhere that specialises in more complex needs.

 

[Lamont D]

Thanks , it feels like a battle to contact anyone right now. Ive spent the past 6 weeks trying to get hold of my diabetes clinic for advice on ketones and my insulin needs increasing threefold! Voice messages and emails are going unanswered.

Today I have sent an email to my GP requesting referral to a diabetes clinic elsewhere that specialises in more complex needs.

Just a thought, does your surgery have an econsult?
With my anxiety issues, it is far less stressful than getting on the never answered phone.