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Type one diabetes - trialnet - testing positive for auto-antibodies

10 replies

mrscampbellblackreturns · 19/07/2018 18:45

So I know this is a bit niche but just wondered if anyone on here had experience of this.

My eldest child is type one (3.5 years since diagnosis). My 2 younger children have had the screening blood test each year since his diagnosis. I just received a call today to say one of my children had tested positive for the autoantibodies. Next step is to go in for glucose tolerance testing but I know that this pretty much means he will go onto develop type one at some point.

Has anyone else been in this position?

OP posts:
t1mum3 · 20/07/2018 16:49

Oh I'm sorry to hear that. Do you do facebook?

WaitingForSunday17 · 20/07/2018 22:14

How many positive antibodies? More than 2?
On fb there is an autoimmune condition group that look at different ways if POSSIBLY delaying onset and also a lot of people there have children with positive antibodies. Prevent autoimmune disorders they are called. I have no idea how effective what they suggest is but it isn’t harmful either so seems worth a go - stuff like vitamin D, omega 3 oils, DHA. Some people have children who failed the OGTT but still aren’t diagnosed quite a number of years later.
This is why I can’t decide whether to trial net my kids... is it better or worse to know?

mrscampbellblackreturns · 21/07/2018 08:02

Thank you for replies.

I think it was 3 positives but was driving on handsfree when the nurse called and she is going to call me back after the weekend to discuss and book us in for the glucose tolerance test.

I am on facebook and did look at that a while ago but got slightly scared off by it all. However don't think I have a lot of choice now and guess it is worth trying the supplements route.

Thank you!

OP posts:
WaitingForSunday17 · 21/07/2018 08:20

Some people low carb too - personally for a child I wouldn’t super low carb but I guess I’d probably reduce any unnecessary high carb foods like sweets or fast foods just because any strain on beta cells results in the attack speeding up.
People can carry on with a number of antibodies for years or it can be quick progression. It seems to really vary.

mrscampbellblackreturns · 31/07/2018 14:47

DC had glucose tolerance test this morning and was a total superstar through out. His levels appear to be normal at present so will wait for all test results in next 6 weeks but then hopefully enrolled in a trial.

Have decided to give him vit d and omega supplements but nothing else at present.

Thank you for your input.

OP posts:
StrawberryLaces0 · 09/08/2018 05:08

Though a shock I'd try not to worry...I went to a talk by Mark Peakman from Kings once who reminded it's an indication of genetic predisposition to T1.....but don’t forget there is this unknown ‘environmental’ factor that has to affect the immune response where T cells start to a track the pancreas and cause clinical onset. He said you could have Jo with 3 markers who doesn’t develop T1 for 20 years and have Bob with 1 marker who develops it 6 months later.

Firstimemama · 07/01/2019 10:46

Hi, both my sisters (I am one of three) have type 1 and I'm worried I might get it at some point .. I have a little boy ages 5 months and if I knew this information i would have my other as soon as possible following what my sister went through .. how do I go about getting the test done every year? Thanks so much, wishing you the best of luck

Firstimemama · 07/01/2019 10:49

This may be coincidence but they both worked with children and I think their bodies went into overdrive fighting off the germs in schools ..

snowie01 · 07/01/2019 10:54

http://www.bristol.ac.uk/translational-health-sciences/research/diabetes/research/trialnet/

There's an email address and phone number at the bottom they may be able to point you in the right direction. Also the link to the main TrialNet international site is on there.

Hopefully you'll get to miss out on this type 1 delight Grin

Butterfly44 · 07/01/2019 20:44

Could just be coincidence, then again we don't know that external trigger is. INNODIA is another study similar to TrialNet, though bear in mind the markers are just that...it doesn't give any guarantees of if or when or even at all! Please try not to worry about what may not happen but focus on every day as it is.

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