Understanding how T1 is passed to children!?

[Grant_Vicat]

Me too, but I have learned that mentioning that round here is not allowed.

Nobody has said "Not allowed". I think you misinterpret most of the posters' intentions. Somehow there are diabetics who simply cannot understand that a worthwhile life is more than possible in spite of what has shattered their lifestyle prior to diagnosis. It is also somehow a duty of those who have lived with the condition for decades to redress the pessimism which would otherwise dominate - almost saying "With diabetes you are not allowed to enjoy life." Not so in a huge number of cases. I sincerely hope that one day you might join the huge number. Good luck

 

[kev-w]

There has been research suggesting introducing cows milk too early could potentially exacerbate underlying problems, which could develop into Type 1. Also lack of vitamin D and exposure to processed foods could play a part. This is what I've gathered so far...just my thoughts.

I was an adopted child, fed I'm told on Carnation condensed milk for the first 6 months of my life, so it makes you think, and as far as it goes having traced my birth mother, none of her side have sugar...
I have 3 kids, none of whom so far have it, although my youngest (11yrs) has an auto immune problem called Lichen sclerosus, so I do worry for her a bit, but the die is cast so to speak, she's mentioned having the antibody test (advertised in the hospital lift) but not pestered so I didn't push.

 

[Mike d]

Not that I'd promote it, but a steroid cream might work?

 

[kev-w]

Not that I'd promote it, but a steroid cream might work?

That's what the Dermatologist at the hospital gave her, well a couple of different ones, she's had no flare ups for a while and there's a chance it can stop altogether during adolescence so the Drs say.
It's it being an auto immune fault that worried me.

 

[Jaylee]

Yeah - it's the potential failing to cheat death that concerns me!

No one cheats death. It's how one treats life that makes the difference...

 

[mountaintom]

Well breast milk didn’t work for me and I had loads of it

 

[Circuspony]

If T1 was purely genetic then it would have died out as a condition before insulin was invented. I got it at 43 with no history in my family at all.

Just unlucky.

 

[ExtremelyW0rried]

It isn't purely genetic but in some families there seems a stronger family link than others. There are families where one parent is t1 or even neither parent is t1 but 3/4 of the children are. Can't just be bad luck.

 

[Rokaab]

It isn't purely genetic but in some families there seems a stronger family link than others. There are families where one parent is t1 or even neither parent is t1 but 3/4 of the children are. Can't just be bad luck.

I do tend to sort of agree with this, none of my parents, grandparents or other relatives had diabetes (of any type), yet both myself and my (younger) brother have Type 1 (both diagnosed as kids, me at 2, him at about 8-9) - we reckon it may have been a combination of genes/DNA/stuff from both sides of the family - but of course this is pure speculation of mine and my parents.

 

[Circuspony]

It isn't purely genetic but in some families there seems a stronger family link than others. There are families where one parent is t1 or even neither parent is t1 but 3/4 of the children are. Can't just be bad luck.

I do agree with you, I suppose I was saying that you can avoid having children if you want to avoid the risk of passing on T1 but its a genetic lottery out there anyway. My friend had no idea she had brittle bone disease until after her son was born and she is absolutely devastated she has passed it onto him, especially as he seems to be significantly worse than she is at a much younger age.

I'm on a study using the drug Abatacept (used for rheumatoid arthritis - another autoimmune disease) and apparently in the US if a child is high risk for T1 (via parental history, another sibling, autoimmune markers) they are trialling it as a precautionary measure to see if it can stop the development of T1.

 

[ExtremelyW0rried]

I believe for most types of type 1 you have to have genes inherited from BOTH sides - which is why a sibling at a 1:10 risk of developing it if they have a t1 brother or sister. Compared to a 1:20 risk if you have a t1 dad or a 1:25 with a t1 mother. It's the highest statistical risk apart from if you are an identical twin of a t1 - then it is 50:50

 

[porl69]

Was diagnosed age 6, 1972. Not one case of diabetes at all through the family tree. I have 2 boys (both are tested when I see them) neither have diabetes. Just unlucky that my body didn't like my islets and decided to wipe them out lol. It has never stopped me doing whatever I wanted to do, made it a bit harder on times, but never stopped me

 

[Celsus]

Can anyone point or discuss some research on the likelihood of passing T1 to children (or potential influencers)? Maybe there exists a difference in how early one was diagnosed with T1? How well T1 is managed? Is this even something that is researched in depth? I am quite interested in a scientific approach and insights rather than some random statistic in some article. It would be very valuable and greatly appreciated if some T1 parents can share their experiences too!

As you probably know by now, then Type1 is not just Type1. ;o)
For us Type1s, there is a myriad of differences in how we all ended up being thrown into this single container by the medical community, to which they attached the cold-hearted ignorant IDDM Type-1 label.

You can find quite many detailed studies now published around this subject if you like to dive deeper. As already referenced by several posters above, the genetics are typically quite different and will determine with high probability when in your life range you may turn diabetic or not. And these genetic variations are also root cause for the prevalence if your offspring has a higher degree of risk or none to contract the same disease in their lifetime.

How well a diabetic type 1 is managing his/her disease has not shown to have any influence on the probability for the disease to appear in their children.

There are a few of the genetic markers that are always there for congenital diabetes type1 and result in diabetes. While the rest can be said to be a multifactorial inheritance disorders caused by a combination of small inherited variations in genes, often acting together with environmental factors that triggers the disease to break out from its latent state.

 

[Grant_Vicat]

Well breast milk didn’t work for me and I had loads of it

Same here!

 

[SugarCyborg]

I’ll just throw this in there and I’ll have to get back to you with the results. I’m T1 with a T1 younger bro, diagnosed at ages 14 & 13 respectively. No known cases on either side of the family. I am currently pregnant with our first. My husband has a T2 dad and uncle, not T2 himself (yet?). Whether my son will have the big D or not?...

 

[gemma_T1]

Hi all,
I was diagnosed type 1 when I was 18, I was fortunate to be able to have one child who unfortunately was diagnosed Coeliac when he was 6. I had been diagnosed as Coeliac when he was 2. He has been getting checked for diabetes antibodies in the Trialnet study since his first birthday and so far everything has come back normal. However, his inclusion in this study finishes when he is 18. Obviously I worry about him developing Diabetes as he already has one of my autoimmune diseases but his specialist said that in this case that we had got the Coeliac early ... it would have been a year earlier if his doctor had done the tests I pleaded for and not put his symptoms down to anxiety and emotions of being at school. The specialist said that sometimes undiagnosed Coeliac disease can provoke diabetes type one.
However, I do think somethings are just the luck of the draw. I had no idea I was Coeliac when I was pregnant and I am the only diabetic amongst all the grandchildren and great grandchildren on both maternal and paternal sides. Neither of my parents or my siblings have it.
My paternal grandmother got diabetes when she was 60 and her brother, my great uncle, got type one aged 21. I come from a big family and so far I am the only diabetic... I often think it was because I was both my grandmother’s and my great uncle’s favourite
On the other hand, on the maternal side we have had another two diagnoses of Coeliac since mine and my son’s.
However, although there are risks involved of diabetics passing on diabetes to their children I remember the doctor telling me that life is full of risk and that the heightened risk isn’t really that high and that he majority of diabetic parents have children who do not go on to develop the disease. At the end of the day we can pass on numerous things to our kids without even knowing.. I realize as type one diabetic mothers or indeed fathers we are always there worrying that one day this hideous disease could happen to them but I tell myself so could a million other things, we just have to be vigilant and if it did happen we have the knowledge to help them that our own parents didn’t .
Generally I’m much better at talking than writing so I hope I didn’t waffle too much I just wanted to say if you are diabetic and thinking of having children IMHO you should go for it .. my mum had no idea that I could become diabetic but I did, and all of the diabetic type ones I know personally have no trace of it in their families either.
Best wishes to all of you considering having children to those of you with children

 

[Grant_Vicat]

Hi @gemma_T1 I thought the following excerpt taken from the book I'm holding, slightly adapted, might interest you:

Throughout my life I have had my own thoughts about why my immune system attacked my pancreas fifty years ago [written in 2009], since diabetes appears nowhere in the last three generations of my family tree, and to ascertain all the causes of death before that would be problematic. However, up until 2nd September 2009, the prevailing opinion was that I had inherited diabetes. On that date I received a letter from [a] Locum Consultant in Medical Genetics, Addenbrooke's Hospital, stating “...I am pleased to report that no gene fault has been identified. Therefore, all the tests to date do not support a diagnosis of a genetic form of permanent neonatal diabetes mellitus in you.”


It is currently agreed that diabetes may be initiated by a virus or trauma, especially in a patient with a genetic predisposition. I have always leaned to the latter category of trauma. Two events occurred only days before my diagnosis. My mother used to tell me that she had left me in the pram outside Shoreham-by-Sea post office while she popped in to buy some stamps. When she came out, there was a large Alsatian barking into the hood of the pram. The other event has taken on more significance in my mind. My mother had taken Giles and me down to the beach, where I was stung in quick succession, seven times, by wasps. She picked me up and dunked me in the sea in order to calm the swellings and alleviate the pain. Clearly I have no memory of either event, but my subconscious has blamed the wasps. Although many doctors have disagreed with me, I think it is possible that wasp stings could easily have caused my immune system to go into overdrive, whether it be the result of shock or of a sudden rush of histamines. My suspicions have been strengthened over the years.

Until recently I used to have recurrent nightmares which would take on a common theme in maybe different surroundings. A typical example would be as follows: I would be locked in, alone, in one of the cavernous state rooms of The Brighton Pavilion, or similar building, with no item of furniture nor potential weaponry in the room. Suddenly a wasp flies in through the keyhole and as it flies towards me it dramatically increases in size until its face is as large as mine, whereupon it says “You won't get away!” Helen's [my wife] stepmother Veronika, who is interested in dreams, suggested that the wasp represents my fear of the needle and that its message conveys that I have diabetes for life. Interesting thought. In addition, I have had an extreme phobia of wasps all my life. This has resulted in some amusing incidents at times. In 1980, Helen, Johanna and I went Interrailing around Europe and found ourselves with the superb mountain framed bay at Kephalonia completely ours. As so often happened on these trips, food and drink was on a minimal budget. We sat on the beach with a large Greek loaf, some margeriney spread, honey and sardines. I had made myself an open fish sandwich and as a result attracted two marauding wasps. The girls were highly amused to witness a trunk- bedecked “man” sprint down into the sea with his hand, complete with sandwich, visible above the water like a submarine periscope. Gingerly I resurfaced and completed my lunch in the water.
My daughter Steph, who is now 33 and has a six-year old daughter, was diagnosed coeliac in her late teens, having had an anaphylactic shock on arrival at Sydney. some years later a female doctor in Canada suggested that Type 1 diabetics could cause Coeliac disease in their offspring. Steph's response was "Now I know who to blame!", all said in good humour. I can say that my maternal grandmother suffered from acute rheumatoid arthritis for at least 20 years, my father had bad asthma and hayfever, my sister has succumbed to rheumatoid arthritis in the last 10 years, Steph's maternal grandfather's side are asthmatic and so the poor girl didn't stand much chance when it came to auto-immune problems. I was the only one to be dealt with Type 1 (1959-2013). I thoroughly agree with your great and encouragingly positive post. The best of luck with your eyesight especially, let alone any other wolves at the door.

 

[gemma_T1]

Thank you I wish you and your family all the best

 

[gemma_T1]

By the way what book were you reading? I’m intrigued

 

[gemma_T1]

Hi @gemma_T1 I thought the following excerpt taken from the book I'm holding, slightly adapted, might interest you:

Throughout my life I have had my own thoughts about why my immune system attacked my pancreas fifty years ago [written in 2009], since diabetes appears nowhere in the last three generations of my family tree, and to ascertain all the causes of death before that would be problematic. However, up until 2nd September 2009, the prevailing opinion was that I had inherited diabetes. On that date I received a letter from [a] Locum Consultant in Medical Genetics, Addenbrooke's Hospital, stating “...I am pleased to report that no gene fault has been identified. Therefore, all the tests to date do not support a diagnosis of a genetic form of permanent neonatal diabetes mellitus in you.”


It is currently agreed that diabetes may be initiated by a virus or trauma, especially in a patient with a genetic predisposition. I have always leaned to the latter category of trauma. Two events occurred only days before my diagnosis. My mother used to tell me that she had left me in the pram outside Shoreham-by-Sea post office while she popped in to buy some stamps. When she came out, there was a large Alsatian barking into the hood of the pram. The other event has taken on more significance in my mind. My mother had taken Giles and me down to the beach, where I was stung in quick succession, seven times, by wasps. She picked me up and dunked me in the sea in order to calm the swellings and alleviate the pain. Clearly I have no memory of either event, but my subconscious has blamed the wasps. Although many doctors have disagreed with me, I think it is possible that wasp stings could easily have caused my immune system to go into overdrive, whether it be the result of shock or of a sudden rush of histamines. My suspicions have been strengthened over the years.

Until recently I used to have recurrent nightmares which would take on a common theme in maybe different surroundings. A typical example would be as follows: I would be locked in, alone, in one of the cavernous state rooms of The Brighton Pavilion, or similar building, with no item of furniture nor potential weaponry in the room. Suddenly a wasp flies in through the keyhole and as it flies towards me it dramatically increases in size until its face is as large as mine, whereupon it says “You won't get away!” Helen's [my wife] stepmother Veronika, who is interested in dreams, suggested that the wasp represents my fear of the needle and that its message conveys that I have diabetes for life. Interesting thought. In addition, I have had an extreme phobia of wasps all my life. This has resulted in some amusing incidents at times. In 1980, Helen, Johanna and I went Interrailing around Europe and found ourselves with the superb mountain framed bay at Kephalonia completely ours. As so often happened on these trips, food and drink was on a minimal budget. We sat on the beach with a large Greek loaf, some margeriney spread, honey and sardines. I had made myself an open fish sandwich and as a result attracted two marauding wasps. The girls were highly amused to witness a trunk- bedecked “man” sprint down into the sea with his hand, complete with sandwich, visible above the water like a submarine periscope. Gingerly I resurfaced and completed my lunch in the water.
My daughter Steph, who is now 33 and has a six-year old daughter, was diagnosed coeliac in her late teens, having had an anaphylactic shock on arrival at Sydney. some years later a female doctor in Canada suggested that Type 1 diabetics could cause Coeliac disease in their offspring. Steph's response was "Now I know who to blame!", all said in good humour. I can say that my maternal grandmother suffered from acute rheumatoid arthritis for at least 20 years, my father had bad asthma and hayfever, my sister has succumbed to rheumatoid arthritis in the last 10 years, Steph's maternal grandfather's side are asthmatic and so the poor girl didn't stand much chance when it came to auto-immune problems. I was the only one to be dealt with Type 1 (1959-2013). I thoroughly agree with your great and encouragingly positive post. The best of luck with your eyesight especially, let alone any other wolves at the door.

By the way we were at my son’s swimming competition last Saturday and in front of us was a family talking to their son, also competitive and roughly the same age as my son ... their son is Coeliac so obviously on hearing they were talking about the gluten free food for him my ears pricked up and a conversation ensued ... they have no diabetics or other Coeliacs in their family ... so go figure ... there are so many theories of how diabetes type one and Coeliac develops ... one day we might know but in the meantime we can only take it as an opportunity to be the healthiest as we can ...
I know this is especially hard when you are young ... my son finds it much harder than me and he will find it harder as he becomes a teen with all that entails - the going out and the rebellion .. I’ve heard all the stories but he seems to have his head on his shoulders (for now) so I have to just hope he doesn’t also succumb to diabetes type one