A question about T1 antibodies

[SB2015]

I know that my T1 was caused by antibodies destroying my beta cells. What I am not clear about (and forgive my ignorance) do the antibodies sit around for years (53 years in my case) just waiting and then decide to get to work, or do they develop nearer the start of the destruction.

 

[rebrascora]

As I understand it, there are no diabetes related antibodies until your immune system is triggered and goes rogue and then produces the antibodies which attack and kill your beta cells, so they only develop a short time before your diabetes develops and once most of your beta cells are killed off after the honeymoon period they start to disappear as there is no longer any need for them. The immune system produces them to fight a perceived threat to the body and once that threat is gone, it doesn't continue to produce them and they fade, but the body does, I believe, retain the information (a blueprint) to produce more at a later date if it needs to, if for example more beta cells were to appear, which is why immunosuppressants are needed with islet transplants.

 

[SB2015]

Thanks @rebrascora
So what starts the attack? I guess if they knew this they would be able to stop it.
I have wanted to ask this for ages!!!

 

[rebrascora]

They believe it is often triggered by a virus, but I think I have read that severe shock or stress or trauma can possibly also trigger it and I personally also suspect that significant hormonal changes like adolescence and pregnancy and menopause may also be able to trigger it. I believe that there is a genetic predisposition to autoimmune conditions but not specifically Type 1 diabetes, so you are perhaps born with the likelihood of developing an AI condition or more than one and it may be more the luck of the draw or environmental factors which determine which one you actually develop.

There is quite a strong incidence of AI conditions on my mothers side of my family and she developed RA (Rheumatoid Arthritis) during the menopause and she also had Pericarditis which can be AI and my sister and I both developed AI conditions within a year of each other during menopause. My sister developed PMR (Poly Myalgia Rheumatica) and we have just recently found out a cousin has developed it too and I have another cousin on my Mam's side with Type 1 and my uncle, not that cousin's father, but again on my mother's side, also had Type 1 and I now have a couple of half cousins with Type 1.... we do have quite a large extended family, but clearly the incidence is higher than the general population.

 

[rebrascora]

I am not sure they could stop it short of giving immunosuppressants to people who are at high risk of developing an AI condition. I think the ELSA research program is testing children who have a Type 1 parent to try to identify which children are at risk, but the idea of taking immunosuppressants for most of your life to try to prevent something that might not happen, may not be a healthy option. Our immune system is there to protect us, it is just unfortunate that some of us have an overly enthusiastic system, that can get carried away in the heat of battle and kill off some of our good guys as well as the baddies! 🙄

 

[Leadinglights]

Thanks @rebrascora
So what starts the attack? I guess if they knew this they would be able to stop it.
I have wanted to ask this for ages!!!

If you Google it then there are various causes speculated but it seems it is one of those things that nobody really knows.
There has been suggestions that the increase in numbers diagnosed was due to Covid.
Certainly having other autoimmune conditions predisposes people to others. The same question arises what causes those. Why does the body stop recognising 'self' from 'non self' and produce antibodies against 'self' and destroy itself.

 

[everydayupsanddowns]

Breakthrough T1D (formerly JDRF) have a page covering the background of prevention research, including Teplizumab which I think is the first drug licensed to help slow the progression of T1 in those at risk.

Prevention research | Breakthrough T1D UK

Our work to prevent type 1 diabetes has great potential to lift the burden of this condition from future generations.

breakthrought1d.org.uk

And also

Teplizumab

Teplizumab is a drug that can treat people found to be in the early stages of

www.diabetes.org.uk

 

[PhoebeC]

I this webinar recently Type 1 Diabetes Grand Challenge: Beta Cell Therapies for Type 1 Diabetes, and the outcome of that is very exciting, however a number of the listeners asked do we know why diabetes happens, and both experts both said that they still do not know, and this will be so key in finding prevention and a cure. https://type1diabetesgrandchallenge.org.uk/news/

 

[Inka]

I know that my T1 was caused by antibodies destroying my beta cells. What I am not clear about (and forgive my ignorance) do the antibodies sit around for years (53 years in my case) just waiting and then decide to get to work, or do they develop nearer the start of the destruction.

@SB2015 This is what I’ve asked a number of times before - both of my consultant and here on the forum. Diabetes U.K. did/are doing a study about it. It was in Balance magazine a while ago. It was basically asking a similar thing - do some people take longer than others to develop overt Type 1? Why? And a few other questions relating to the study and possible treatments, if I remember correctly. Do the beta cells manage to grow back under the immune attack and take longer to be killed off, etc?

The antibodies don’t always go away. I still had two antibodies around 25 years after diagnosis. I also still make a very small amount of insulin. I think the Joslin Centre had people who still made tiny amounts of insulin decades after diagnosis.

 

[Inka]

Thanks @rebrascora
So what starts the attack? I guess if they knew this they would be able to stop it.
I have wanted to ask this for ages!!!

That’s one of the first question I asked my consultant 30+ years ago! They didn’t know then and they still don’t know now. However, there have been studies which have suggested some culprits and some mechanism. One studied formula fed babies compared with breastfed, and found the formula fed ones had an increased risk of Type 1. My consultant specifically advised me to breastfeed my babies and I did but would have done it anyway for other health reasons. She said that would give them some protection against Type 1. There was also a study saying that certain types of cow’s milk were more likely to create auto-immune problems.

Recent studies have suggested the gut and microbiome has a big role to play. This might be part of the reason why breastfeeding helps so much - because it seals the gaps in the gut lining and also helps the microbiome. This fits in with the link to coeliac disease. One study looked at tribes in Africa and studied their microbiome. Faecal transplants have also been looked at. Anyway, as I understand it, basically the theory is the gut is damaged/defective in some way which allows foreign proteins through the barrier, creating a cascade of events resulting in the destruction of the beta cells. The damaged gut could also allow viruses through or to act in ways they shouldn’t.

I still ask my consultant if they know what causes Type 1 every year, and she now says that she believes Type 1 starts in the gut. Knowing the cause and the mechanism would help us find a cure.

 

[Inka]

I am not sure they could stop it short of giving immunosuppressants to people who are at high risk of developing an AI condition. I think the ELSA research program is testing children who have a Type 1 parent to try to identify which children are at risk, but the idea of taking immunosuppressants for most of your life to try to prevent something that might not happen, may not be a healthy option. Our immune system is there to protect us, it is just unfortunate that some of us have an overly enthusiastic system, that can get carried away in the heat of battle and kill off some of our good guys as well as the baddies! 🙄

As in my post above, I think the gut is the answer. Did you know that if someone lives in a country with a very low prevalence of Type 1 and then moves to a country with a high prevalence, their risk increases? It’s something environmental damaging the gut, and food is an obvious suspect.

 

[SB2015]

As in my post above, I think the gut is the answer. Did you know that if someone lives in a country with a very low prevalence of Type 1 and then moves to a country with a high prevalence, their risk increases? It’s something environmental damaging the gut, and food is an obvious suspect.

… and perhaps linked to change in diet in new environment and so back to the gut. Too far back to remember if I had any gut problems at the time of diagnosis.

I tended not to worry once I had it as thinking about what caused it was too late for me. Just inquisitive and as you say if they know more about what causes it they can direct the research into prevention.

 

[Inka]

I think it would be good to know what caused it even though we can’t change it now. When I was first diagnosed, I thought about the cause a lot. I kept going over things in my head.

In your case, with the later onset, that would be covered by the research I mentioned, ie did you have low level antibodies for years so that your Type 1 stemmed from some environmental factor many years previously, or was it triggered a shorter while before your diagnosis? These are all interesting questions because say you’d developed antibodies at 25 but didn’t get Type 1 until you were 50, maybe there’s a way to ward it off or interrupt the progress?

 

[trophywench]

i had lingering 'gastric flu' in February 1972 - was off work for a fortnight and had to get doc to come out to me at home, only time in my own life I've needed to do that - cos I was in urgent need of a sicknote for work by then (and they all stopped doing that as a matter of course not ever so long after that!) Anyway, at that time, GP commented probably a viral bug.

Stopped the d and v, but never really felt 'bouncing with health' after that and gradually got more and more unexplainable symptoms, the heart palpitations really quite frightened me, to be honest. Was them that eventually made me make an appt at my GP. Constantly gasping for a drink and spending the rest of my time piddling wouldn't be anything bad, I mean everyone needs to drink and pee, don't they? Rest of how I felt, honestly thought the doc would give me a metaphoric shake and tell me to sort myself out, cos it was all a bit too vague-ish, and not like agonisingly painful or anything likely to be 'serious'.

 

[helli]

I certainly had a viral infection before my diagnosis.
The main symptom was enflamed tastebuds so it was diagnosed as a glandular virus. But not glandular fever.

 

[Inka]

I think viruses that are immediately pre-diagnosis are just the final straw that tips someone over into Type 1 rather than the cause. I remember my consultant said the auto-immune attack goes on for a while, killing beta cells, but we don’t realise as the remaining beta cells fight valiantly on with numbers gradually decreasing due to the continued auto-immune attack. It’s not until there are approximately 20% of the beta cells remaining that they can no longer cope, blood sugar shoots up quickly, and Type 1 is diagnosed. A virus, pregnancy, etc, can just be the push that tips it over and makes it happen a little more quickly, but it would have happened anyway at a later date because the immune attack had already started.

 

[SB2015]

I think viruses that are immediately pre-diagnosis are just the final straw that tips someone over into Type 1 rather than the cause. I remember my consultant said the auto-immune attack goes on for a while, killing beta cells, but we don’t realise as the remaining beta cells fight valiantly on with numbers gradually decreasing due to the continued auto-immune attack. It’s not until there are approximately 20% of the beta cells remaining that they can no longer cope, blood sugar shoots up quickly, and Type 1 is diagnosed. A virus, pregnancy, etc, can just be the push that tips it over and makes it happen a little more quickly, but it would have happened anyway at a later date because the immune attack had already started.

That was my understanding too.

 

[PhoebeC]

Yes me too.

Looking back for a while was always unwell after PE at school, how I get now if I’ve had days of hypers. It went on for ages. They thought it was just always a cold. Then a tooth got infected and I was then very unwell and that was it. I don’t have the records of how long that was but I do know it was at least a school year as I remember the seasons changing.