Not diabetic, but sugar intolerant....

[BubbleandSqueak]

I have not been diagnosed as diabetic so please accept my apologies for posting on here. However, it seems a couple of years ago I developed an intolerance to lactose and glucose. I am also diagnosed wit Crohn's, which is in remission, but a hydrogen breath test I took after developing problems that were not consistent with Crohn's was positive for both sugars and I felt particularly ill after the glucose test, the effects of which took at least a couple of days to subside! The effects caused are at the very least very uncomfortable, but can also be extremely painful for a significant duration. I have been advised to avoid any products with any form of milk in them (milk power, whey, buttermilk etc), but I have found that I even have to limit or best avoid even "lactose free" varieties. I especially have to avoid anything that contains glucose syrup, which is an ingredient in a surprising number of ready made products, and not just sweet items... I do seem to be able to tolerate a limited amount of ordinary sugar and maple syrup, but appartently not honey.

Apparently SIBO was ruled out since the antibiotics made little difference, which has left me with a number of questions for which I can't seem to be able to find answers including with medical professionals. These include:

1. What causes the onset of intolerance to sugars such as lactose and glucose? Is it an age related thing? (I am now 63)
2. Can it be a pre-cursor to diabetes or is it completely unrelated?
3. What about other simple sugars such as Dextrose and Fructose? Should I avoid these too? (Dextrose does seem to give me some abdominal pain after a while).
4. Where can I find more information to help me understand this condition, how do I deal with it, and who can I turn to for advice?

I have been through a low Fodmap diet and while that has been helpful in identifying some foods that can be irritants, this has not dealt with understanding the underlying problem of sugar intolerance.

 

[Leadinglights]

I have not been diagnosed as diabetic so please accept my apologies for posting on here. However, it seems a couple of years ago I developed an intolerance to lactose and glucose. I am also diagnosed wit Crohn's, which is in remission, but a hydrogen breath test I took after developing problems that were not consistent with Crohn's was positive for both sugars and I felt particularly ill after the glucose test, the effects of which took at least a couple of days to subside! The effects caused are at the very least very uncomfortable, but can also be extremely painful for a significant duration. I have been advised to avoid any products with any form of milk in them (milk power, whey, buttermilk etc), but I have found that I even have to limit or best avoid even "lactose free" varieties. I especially have to avoid anything that contains glucose syrup, which is an ingredient in a surprising number of ready made products, and not just sweet items... I do seem to be able to tolerate a limited amount of ordinary sugar and maple syrup, but appartently not honey.

Apparently SIBO was ruled out since the antibiotics made little difference, which has left me with a number of questions for which I can't seem to be able to find answers including with medical professionals. These include:

1. What causes the onset of intolerance to sugars such as lactose and glucose? Is it an age related thing? (I am now 63)
2. Can it be a pre-cursor to diabetes or is it completely unrelated?
3. What about other simple sugars such as Dextrose and Fructose? Should I avoid these too? (Dextrose does seem to give me some abdominal pain after a while).
4. Where can I find more information to help me understand this condition, how do I deal with it, and who can I turn to for advice?

I have been through a low Fodmap diet and while that has been helpful in identifying some foods that can be irritants, this has not dealt with understanding the underlying problem of sugar intolerance.

Welcome to the forum, I have never heard of anybody mention this condition before but from what you are saying about lactose free things still affecting you I wonder if it is an lactose allergy which would be reaction to the proteins in dairy products rather than the lactose which is a sugar.
Dextrose is just another name for glucose.
Sugar (sucrose) is a combination of glucose and fructose so you may be intolerant to that as well.
What test did you have to rule out diabetes as for diagnosis you would normally have an HbA1C test.
Guts.uk is a charity which has information about all sorts of gut related conditions so that might be a place to look for help. link is https://gutscharity.org.uk/

 

[Inka]

I have not been diagnosed as diabetic so please accept my apologies for posting on here. However, it seems a couple of years ago I developed an intolerance to lactose and glucose. I am also diagnosed wit Crohn's, which is in remission, but a hydrogen breath test I took after developing problems that were not consistent with Crohn's was positive for both sugars and I felt particularly ill after the glucose test, the effects of which took at least a couple of days to subside! The effects caused are at the very least very uncomfortable, but can also be extremely painful for a significant duration. I have been advised to avoid any products with any form of milk in them (milk power, whey, buttermilk etc), but I have found that I even have to limit or best avoid even "lactose free" varieties. I especially have to avoid anything that contains glucose syrup, which is an ingredient in a surprising number of ready made products, and not just sweet items... I do seem to be able to tolerate a limited amount of ordinary sugar and maple syrup, but appartently not honey.

Apparently SIBO was ruled out since the antibiotics made little difference, which has left me with a number of questions for which I can't seem to be able to find answers including with medical professionals. These include:

1. What causes the onset of intolerance to sugars such as lactose and glucose? Is it an age related thing? (I am now 63)
2. Can it be a pre-cursor to diabetes or is it completely unrelated?
3. What about other simple sugars such as Dextrose and Fructose? Should I avoid these too? (Dextrose does seem to give me some abdominal pain after a while).
4. Where can I find more information to help me understand this condition, how do I deal with it, and who can I turn to for advice?

I have been through a low Fodmap diet and while that has been helpful in identifying some foods that can be irritants, this has not dealt with understanding the underlying problem of sugar intolerance.

I’ve heard of this before but can only remember a few details. It’s an intolerance to certain carbohydrate types, if I remember correctly. My guess would be it might be connected to your Crohn’s and possible damage/dysfunction of your digestive system, meaning you’re unable to tolerate certain sugars.

I don’t know but I’d say it’s unrelated to diabetes, being an issue of digestion. Type 1 diabetes is an auto-immune condition and Type 2 is metabolic, to put things simply. Having said that, people with Crohn’s do apparently share some genes with people with Type 1, so it’s possible the Crohn’s itself might put you at a slightly increased risk. You’d have to check with your GP or consultant.

I can’t answer about whether you should avoid other sugars. You’d have to experiment cautiously and see. Apparently, fructose can be poorly tolerated by those with a similar condition to yourself, so I’d go easy on that. I believe honey contains some fructose so it might well be you can’t tolerate it as you react to that.

People with diabetes can tolerate sugars usually. We only have to watch in case they put our blood glucose level too high.

I suggest you look at the gut site mentioned above. You could also see if you could speak to a dietician. The name of the diet I read about was SCD - the Specific Carbohydrates Diet. It’s quite restrictive and I would think you’d need a dietician to guide you and ensure you were receiving adequate nutrition. There’s some basic information here:

https://www.crohnscolitisfoundation.org/diet-and-nutrition/special-ibd-diets

.

 

[BubbleandSqueak]

I don't know whether its the HbA1C test that I have had, but I have had my blood sugar levels checked before and after the hydrogen breath tests (part of the test process) and also since and my levels have always been fine.

The breath test indicates that its the sugars rather then the protein in milk but its an interesting point and I don't dismiss anything at this point. Could the Proteins also be a factor... One indicator pointing to lactose is what happened when at first it was thought I had a Crohn's flareup around two and a half years ago. I was given a 1 week course Prednisone which in that past it had worked very well. However, on that particular occasion, it made my symptoms 10x worse and I had to endure the worst week of agony I have ever had to endure. Things calmed down when I was taken off them, at which point I was referred for the hydrogen breath tests. The filler in Prednisone tablets contains lactose. Yet the tablets are tiny, but I was taking 8 of them per day.

I was not aware that Dextrose is another name for Glucose. I had thought it was a different basic form of sugar.

Your guess that it might be connected to the Crohn’s and possible damage/dysfunction of your digestive system also makes sense. Crohn's can damage the system over time so I guess its possible that some part of the gut has been damaged and this is now presenting as sugar intolerance. The problem did surface rather quickly, over a matter of a few weeks if not days. I had a somewhat delicate gut and nursed it with rice pudding and suddenly one day had extreme pain after eating it. I subsequently stopped eating it but didn't make the connection with lactose until after the hydrogen breath tests.

I do wonder whether I have had a pre-disposition to this problem as I do recall even in my teens having a gut pain in response to dextrose (Dextro Energy tablets). I did also on occasion have intense pain (doubling over intensity) and cramps after eating a breakfast cereal although this was generally dismissed as nothing to worry about (I guess it was not life threatening after all, though it was horrible when it happened). I did very much have a "sweet tooth" in those days. I also had some horrendous stomach upsets. Being young you just put it down to your gut being "off". Nowdays, it is rare to find a day where my gut is not causing me at least some discomfort. I mention this for backgound in case it might be relevant.

I had a call with the dietitian today as it happens. The advice was to take pro-biotics and multivitamins. Unfortunately the topic of sugar intolerance was avoided as usual. I don't think the NHS in the UK are interested in dealing with it.

I have noted the point about Fructose and thank you for mentioning it. I will also read up on SCD and
have a look at the guts charity website. Thank you for the information.

 

[Leadinglights]

My other half was diagnosed (eventually ) with Crohn's some years ago as a result of having colonoscopy and CT scans but is largely asymptomatic with the occasional flare up (extreme discomfort, pain and vomiting, feeling of being poisoned) which lasts at most 36 hours. It does not in any way seem to be related to food but he takes a medication called Pentasa all the time. The Gastro consultant wanted him to have some treatment involving immunosuppressants which he refused as the side effects read as being worse than the flare ups he gets very occasionally. Interestingly last October he was really unwell and thought it was a flare up but it transpired he had what was diagnosed as stump appendicitis where a bit of appendix had got left behind from when he had had his appendix out 55 years ago and it had perforated. He was on antibiotic drip for 2 weeks and it has healed itself. He is not actually convinced that what he has is actually Crohn's.
I hope you get to the bottom of what is going on with you soon.

 

[Leadinglights]

I don't think that the tests you have were an HbA1C as that would be a one off which is an indication of your blood glucose over the previous 3 months and is used to diagnose diabetes as anything over 47mmol/mol would be diabetic, 42-47 'at risk' and below 42 is normal.
What you had were likely spot tests from a finger prick or even a sample from your arm to test what your blood glucose level was at that moment in time. Whatever that was would indicate how well your body had handled the various 'sugar' solutions you had been given, between 4-7 mmol/l would be pretty normal.
It might be worth asking for an HbA1C test to rule out diabetes.

 

[Sarahp]

I have not been diagnosed as diabetic so please accept my apologies for posting on here. However, it seems a couple of years ago I developed an intolerance to lactose and glucose. I am also diagnosed wit Crohn's, which is in remission, but a hydrogen breath test I took after developing problems that were not consistent with Crohn's was positive for both sugars and I felt particularly ill after the glucose test, the effects of which took at least a couple of days to subside! The effects caused are at the very least very uncomfortable, but can also be extremely painful for a significant duration. I have been advised to avoid any products with any form of milk in them (milk power, whey, buttermilk etc), but I have found that I even have to limit or best avoid even "lactose free" varieties. I especially have to avoid anything that contains glucose syrup, which is an ingredient in a surprising number of ready made products, and not just sweet items... I do seem to be able to tolerate a limited amount of ordinary sugar and maple syrup, but appartently not honey.

Apparently SIBO was ruled out since the antibiotics made little difference, which has left me with a number of questions for which I can't seem to be able to find answers including with medical professionals. These include:

1. What causes the onset of intolerance to sugars such as lactose and glucose? Is it an age related thing? (I am now 63)
2. Can it be a pre-cursor to diabetes or is it completely unrelated?
3. What about other simple sugars such as Dextrose and Fructose? Should I avoid these too? (Dextrose does seem to give me some abdominal pain after a while).
4. Where can I find more information to help me understand this condition, how do I deal with it, and who can I turn to for advice?

I have been through a low Fodmap diet and while that has been helpful in identifying some foods that can be irritants, this has not dealt with understanding the underlying problem of sugar intolerance.

Hi I have ibd plus diverticulitis so use fod map to manage that and it really stinks when combined with diabetes as fod map plan can be very refined (depends on your triggers), have you been checked for wheat intolerance or allergy? It was one thing I had to have ruled out, I am not allergic but certain wheat products give me the shakes and have since my pre diabetic days.
How are you at using food diaries to chart symptoms vrs what you’re eating? I would try gentle changes like with fod map to understand if you have any triggers and also talk to your Gp re a re test for diabetes especially if any type 2 in your family. Happy to chat if helps?

 

[BubbleandSqueak]

What you had were likely spot tests from a finger prick or even a sample from your arm to test what your blood glucose level was at that moment in time. Whatever that was would indicate how well your body had handled the various 'sugar' solutions you had been given, between 4-7 mmol/l would be pretty normal.
It might be worth asking for an HbA1C test to rule out diabetes.

Yes, it was a pin prick test and was normal.

 

[BubbleandSqueak]

How are you at using food diaries to chart symptoms vrs what you’re eating? I would try gentle changes like with fod map to understand if you have any triggers and also talk to your Gp re a re test for diabetes especially if any type 2 in your family. Happy to chat if helps?

I have been through the low fodmap diet and it was helpful. I now know, for example, that I need to limit the amount of celery and garlic and avoid cauliflower as they are an irritant, although I can tolerate some onion. I also found that if I use milk alternatives (oat, almond), they have to be "no sugar" variant otherwise I feel nauseous within minutes. I seem to be OK with gluten, but suspect that I may need to reduce the quantity I consume. I am OK with meats and eggs. I have to leave out most vegetables especially those with skins (sweetcorn, peas), or remove skins (tomatoes). I am OK with a small quantity of maple syrup but am best to avoid honey. I am perfectly fine with potatoes, rice, quinoa and pasta, even seemingly the ordinary gluten containing kind. Its complicated but the diet was useful and very helpful because it allowed me to identify these things to avoid (including lactose), but it did not explain why I have a problem with digesting other sugars such as glucose or how to deal with it. In fact, there seemed to be no specific requirement to avoid glucose while on the diet, although I did so, because I was already aware from the result of the hydrogen breath test that I react adversely and severely to it.

In short, while helpful in identifying a management strategy in terms of diet, it does not explain the underlying cause of the problem.

 

[Sarahp]

I have been through the low fodmap diet and it was helpful. I now know, for example, that I need to limit the amount of celery and garlic and avoid cauliflower as they are an irritant, although I can tolerate some onion. I also found that if I use milk alternatives (oat, almond), they have to be "no sugar" variant otherwise I feel nauseous within minutes. I seem to be OK with gluten, but suspect that I may need to reduce the quantity I consume. I am OK with meats and eggs. I have to leave out most vegetables especially those with skins (sweetcorn, peas), or remove skins (tomatoes). I am OK with a small quantity of maple syrup but am best to avoid honey. I am perfectly fine with potatoes, rice, quinoa and pasta, even seemingly the ordinary gluten containing kind. Its complicated but the diet was useful and very helpful because it allowed me to identify these things to avoid (including lactose), but it did not explain why I have a problem with digesting other sugars such as glucose or how to deal with it. In fact, there seemed to be no specific requirement to avoid glucose while on the diet, although I did so, because I was already aware from the result of the hydrogen breath test that I react adversely and severely to it.

In short, while helpful in identifying a management strategy in terms of diet, it does not explain the underlying cause of the problem.

Hi
You can use your food diary to tally up your symptoms with any foods with glucose, refined products be is savour/sweet/carbs including pulses not just your fod map triggers, if it were me I would re start the diary for a couple of weeks and update your dr asap re your continued symptoms, the pin prick test is not fool proof for diabetes as only gives the picture at that moment, not the longer term situation, a Hba1c is better or the glucose tolerance test was the first test I remember being discussed with me.
Food diaries are used for all sorts of issues to help narrow down the cause, my first was actually when they suspected a wheat allergy.

 

[DaveB]

A small point about Fructose. The body can't really handle it unless in small quantities and tends to store it as fat if too much. Although fructose is in fruit it's best kept under control.