Getting old while HFI also having genetic Diabetes and HFI

[ukbill]

OK I am now 67 years old and was not on a safe diet until I was in my mid to late 40's and only really on a very safe diet from my mid 50's

As a result of this I do suffer from quite a lot of gut issues caused by many decades of poisoning myself on a daily basis.

From my mothers side of the family I have also inherited age related diabetes.
My mother became diabetic in her 80's
My elder brother also in his late 50's
I have just passed the threshold and now am officially diabetic and on Metformin.

I am doing everything I can to reduce the carb intake and my weight.. which was not high in the 1st place. I have reduced my waist measurement by 3" so far down from 36" to 33" at the moment and trying to get it down to 32" if I can. I am feeling a lot better for this weight drop already, however I have also noticed an increased tendency to go low blood sugar during exercise or heavy physical work, but feeling much lighter on my feet and less groaning when I have to get out of a chair or up from the floor when servicing or working on a car. lol.

However due to the metformin I am now having issues with maintaining a stable blood sugar level.

So I am about to start using a CMG blood glucose monitor to record my blood sugars every 5 min.

So I will document this here because this might well be interesting to people to know how different foods will effect my blood sugar levels over time.

As far as I know I am the only HFI'er to become diabetic. We are largely well protected from this condition due to the unlikelihood of becoming obese and our diet excludes Fructose which is a well known cause of type 2 diabetes.

I will try using the blood sugar support of adding cornflower to milk as a bed time drink to support blood sugar levels for 8 hours or so in the case of extreme exercise such as running marathons, climbing mountains etc that any of us may well want to do but avoid due to the worry of becoming hypo through extreme exercise.

I will do this also to see how my blood sugars react to climbing mountains and extreme energy burning sessions.

Keep smiling this information will be interesting!

[luisrodrigues]

That is crazy… To think one who doesn’t even eat fructose or eat a high carbohydrate diet to become diabetic at this age.. is it type 2 diabetes? Type 1?
Either way.. I would advise you then to try a very strict low carbohydrate diet.. or even zero (yes, sounds extreme but I have done it with tremendous success and healing results)..
I hope you’re feeling well tho, Bill.
I’m curious, besides your family history , what were the signs you felt for you to go check if you were diabetic! Were you lethargic? Losing wait, urinating a lot?
I believe that you can somewhat heal you pancreas still at this age.. or give a little rest, by eating plenty of good fats and proteins and no carbohydrates..
But keep us updated!
This community here is too silent.
I wonder where are the people with this condition ? We don’t get enough exposure or support to eachother.
In the whole world, are we that many few?
Bill let me know if there’s another platform/domain in which there’s plenty more people like us, I am thinking about creating a YouTube channel dedicated to this.
People need to know this.
Even the average person needs to know that some people can die because of something as simple as “sugar”.
Doctors aren’t even educated enough on the matter for the most part..

[ukbill]

I am on several HFI Facebook pages and know of other HFI'ers who have Instagram channels as well as Facebook. HFI in the kitchen for one.
I agree with you I have my suspicions about where are most of us.. after all HFI is not that uncommon (in rare disease circles anyway) blind tests on old heal prick blood tests show an actual incidence rate of 1:15000 in the UK.
That equates to over 1 HFI born in the UK each week. So there should be about 6,000 of us in the UK.. only about 300 have ever been diagnosed.
Yes at least as many undiagnosed will be out there in the "wild" so to speak. however I feel that most of us fail to make it past weaning.
Recently baby milk manufacturers have removed sucrose and Fructose from baby milk, so HFI babies fed formula milk from birth have now a chance of survival.
I suspect many still die though due to parents following "normal" advice from doctors and dieticians who simply do not "get" HFI even those in specialist clinics give dangerous advice in my experience.

I have now got a CGM a device plugged into my arm which produces a blood glucose level if 20 min delayed.
It is helping immensely with leveling out my blood sugar levels and showing what actually causes high spikes.

I have eaten potatoes, white rice and pasta and had little to no spikes at all! plain white bread (supermarket soft white) produces a MASSIVE spike however particularly if eaten on an empty stomach and plain without butter or cheese.
My biggest problem was being caused by my "healthy" breakfast. This was two Shredded Wheat, a hand full of Puffed Wheat, milk and plain Yogurt.
According to the app on my phone which monitors my blood sugars I am now out of type two diabetes within 14 days!
I have dropped from 50 ( to now 46 (6.4) on my expected next blood test.
This is the HbA1c test.
This is now 112 Mg/DL 6.4% 46 mmol/mol
My fasting level is currently 5.9 so still pre diabetic levels but a lot better than before.
I am on Metformin which seems to have the main effect of killing all feelings of hunger so I am not eating much at all these days. but that is a good thing because I had built up a bit of a belly and although I have been 34" waist for many years I had gone up to 36" and was feeling them a little tight too. I am now down to 33" and needing a belt on all my trousers lol.
I really miss my breakfast though. now having a fried breakfast which may well effect my already high Cholesterol levels.
They are HDL 1.34 and LDL 4.8.. which is the one I need to get down.
I am feeling a lot better yes. feet feel a lot warmer and not getting as much water retention in my ankles as I was starting to get.
However I do need more exercise and we do need a new dog so I am forced to walk. My better half is against this. We had a gorgeous Great Dane who died nearly 2 years ago now. She was an extremely smelly girl and had gut issues which made breathing difficult at times!
Keep smiling!

[ukbill]

Aug 7, 2023 10:50:46 GMT -5 luisrodrigues said:

That is crazy… To think one who doesn’t even eat fructose or eat a high carbohydrate diet to become diabetic at this age.. is it type 2 diabetes? Type 1?
Either way.. I would advise you then to try a very strict low carbohydrate diet.. or even zero (yes, sounds extreme but I have done it with tremendous success and healing results)..
I hope you’re feeling well tho, Bill.
I’m curious, besides your family history , what were the signs you felt for you to go check if you were diabetic! Were you lethargic? Losing wait, urinating a lot?
I believe that you can somewhat heal you pancreas still at this age.. or give a little rest, by eating plenty of good fats and proteins and no carbohydrates..
But keep us updated!
This community here is too silent.
I wonder where are the people with this condition ? We don’t get enough exposure or support to eachother.
In the whole world, are we that many few?
Bill let me know if there’s another platform/domain in which there’s plenty more people like us, I am thinking about creating a YouTube channel dedicated to this.
People need to know this.
Even the average person needs to know that some people can die because of something as simple as “sugar”.
Doctors aren’t even educated enough on the matter for the most part..

Good news is HFI is now included in an initial test on newborn children and I hope will be rolled out soon to all new born children in the UK.
I have had a charity set up in the UK for some years but not been able to do anything with it due to time and work constraints.
However I now have help and watch this space!

HFI-Support is soon to be launched!

Yes we intend having a YouTube channel as well. however we are also expecting a huge kick back.
75% of the food eaten by the 1st world nations population is controlled by 7 companies.. which is mind blowing enough.. however when I tell you those companies are in turn all owned by the tobacco industry you will realise why we are somewhat worried and expect a lot of miss information and "research" proving us to be wrong.
This is why the VEGAN Soc. has been pumped full of funds by these companies ($billions) to promote Vegan Soc. and sell their dog and cat food type fake foods for the human consumption.
In America the average lifespan age has dropped by 10 years over the last 20 entirely due to diet related issues. Dogs and Cats that used to live for 15 / 20 years + on average now die at 10 / 15 years old.. need I say more?

There are several Facebook groups for HFI most are very active.
The better ones are for diagnosed only people. Where we can talk more freely than on open forums.
This group has been spammed by people "believing" they have HFI while clearly not.. usually confusing FM Fructose Maladsorption with HFI.. mind you Doctors and medical professionals do that all the time and they have no excuses at all!
On this forum we have also had parents of HFI children who "believe" such stupid things as eating sugars is "cultural" and HFI children have to be given sweets.. regardless of the damage caused by contaminated glucose.
Glucose by the way can contain up to 40% "other sugars" and still be sold as 100% pure glucose! So if you really really have to use it get medical grade Dextrose not the over the counter confectionary grade.


My Drs have been warning me for some years I was prediabetic (type 2 of course) but I just laughed them off.
However I had for some time been suffering with "dead legs" my legs and feet felt like they were someone else's and I had a a couple of falls and injured by shoulder quite badly 2 years ago as a result of one of them.
This has cleared up nicely now and I can dance and not even stumbling occasionally anymore.
I was also getting the excessive urine issues and thirst associated with Diabetes.
In my case this is genetic age related. My mother became diabetic in her 80's and my brother in his late 50's / early 60's.
So I did not do too badly.
My brother has also had issues with controlling his blood sugar levels (he has a sweet tooth) so he has now started doing my trick of eating protein before eating any carbs (breakfast cereal) Which I suspect is a major cause of type 2 diabetes. Certainly if I remove processed carbs from my diet I do not get any spikes at all in my blood sugar.

Keep smiling
Bill A.