Recently diagnosed Type 1 & Coeliac Disease

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nic281979

nic281979

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Type 1
Hi. I was diagnosed at the beginning of May after feeling unwell for 6 months. I completed an E-consult and went for a blood test. The Tuesday after the May bank hols i had a call to say i had Coeliac Disease and then on the Wednesday to say i had Diabetes - unknown which type at this stage, after lots of appointments and vaccinations and an 8 week wait, it was confirmed as Type 1, so now I'm 42 with two life changing illnesses - although now I'm on baltus insulin i don't feel ill like i was.

What i am interested to know if anyone else has had a double whammy like me?
I'm struggling with what to eat - especially during this heatwave as although there are tons of good gluten free products a lot are carb heavy - i never ate that much bread anyway?
My levels over the last couple of day have been all over the place, i guess due to the heat.

Any hints or tips?
 
Welcome @nic281979 🙂 What a stress being diagnosed with both things at once! That can’t have made meal planning easy. There are a number of Type 1s here with coeliac disease. As you’ve probably been told, there’s a strong link between the two and they’re both auto-immune diseases. As a Type 1, I’m screened for coeliac regularly.

I’ve had Type 1 almost 30 years. My tip is to find out as much as you can about it as this is a condition where you have to ‘be your own expert’. My second tip is to understand that perfection is impossible. Targets are just that - targets. No-one achieves perfection all the time. My third tip is to pace yourself and be kind to yourself. Diabetes is a marathon not a sprint. It’s a psychological load as well as a practical one.

I didn’t understand what insulins you’re on - was that a typo? Are you on both basal and bolus (meal time) insulins?

Finally, two books much recommended for Type 1 are:


Think Like a Pancreas’ by Gary Scheiner.

And Type 1 Diabetes in Children Adolescents and Young People by Ragnar Hanas (ignore the title - it’s great for adults too)

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Inka said:
Welcome @nic281979 🙂 What a stress being diagnosed with both things at once! That can’t have made meal planning easy. There are a number of Type 1s here with coeliac disease. As you’ve probably been told, there’s a strong link between the two and they’re both auto-immune diseases. As a Type 1, I’m screened for coeliac regularly.

I’ve had Type 1 almost 30 years. My tip is to find out as much as you can about it as this is a condition where you have to ‘be your own expert’. My second tip is to understand that perfection is impossible. Targets are just that - targets. No-one achieves perfection all the time. My third tip is to pace yourself and be kind to yourself. Diabetes is a marathon not a sprint. It’s a psychological load as well as a practical one.

I didn’t understand what insulins you’re on - was that a typo? Are you on both basal and bolus (meal time) insulins?

Finally, two books much recommended for Type 1 are:


Think Like a Pancreas’ by Gary Scheiner.

And Type 1 Diabetes in Children Adolescents and Young People by Ragnar Hanas (ignore the title - it’s great for adults too)

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Click to expand...
Hi
Thanks for that i meant basal, i answered the phone as i was typing!
It's not been as stressful, i have tried to stay positive, i didn't want to get myself into a woe is me attitude, finally getting diagnosed and treated and knowing i wasn't imaging how i felt made me more positive. The hardest part is before all of this i had a severe fear of needles- got over that pretty quick!:D
I will have a look at the books.

Thank you
 
Welcome to the forum @nic281979 from another late starter (aged 53)
Sorry to read of your double whammy, and whilst I can’t advise on coelic, my top tips for T1 is

Recognise that perfection is impossible.
I spent a long time getting better and better control but then it just didn’t improve and I found the inevitable variations and unpredictability on some days very frustrating. All we can do is the best that we can, and this heatwave definitely confuses thing, so don’t be surprised if things are a bit all over the place.

Stay in touch with others.
I choose to use this forum, where I can post a panicky question at times, see that others have wobbles, have a rant … and people will ‘get it’….

The book by Ragnar Hanas is a great source of info. Very clearly explained and kept up to date with the tec, which is changing so quickly now. Ignore the age reference, and perhaps leave out the bit about starting school!!

Keep in touch and fire away with any that you have. Nothing is considered silly on here. Just ask.
 
nic281979 said:
Hi. I was diagnosed at the beginning of May after feeling unwell for 6 months. I completed an E-consult and went for a blood test. The Tuesday after the May bank hols i had a call to say i had Coeliac Disease and then on the Wednesday to say i had Diabetes - unknown which type at this stage, after lots of appointments and vaccinations and an 8 week wait, it was confirmed as Type 1, so now I'm 42 with two life changing illnesses - although now I'm on baltus insulin i don't feel ill like i was.

What i am interested to know if anyone else has had a double whammy like me?
I'm struggling with what to eat - especially during this heatwave as although there are tons of good gluten free products a lot are carb heavy - i never ate that much bread anyway?
My levels over the last couple of day have been all over the place, i guess due to the heat.

Any hints or tips?
Click to expand...
Hello and welcome to the forum 🙂
It sounds as if you need to be on a bolus insulin as well. I'm surprised you haven't been issued with one . Having a bolus means you inject before you eat and can basically eat what you want.
Once you have got over the coeliac shock it's surprising what is gluten free. If you have a morrisons near you have a look at their free from section, Tesco has a very good section as well.
The bread leaves a lot to be desired (understatement) so shop around until you find one that suits your taste. Toasting the bread helps no end.

Heat is def having a major affect on peoples levels, also you have the added bonus! of going through the honeymoon period. So take one day at a time and don't dwell on yesterdays or todays results, tomorrow is another day.

There is no one on this earth with diabetes who has perfect numbers 🙂
 
We (well my OH) have just made some bread using EinKorn flour which says it is suitable for people with gluten sensitivity but NOT recommended for coeliac condition. I always thought coeliac was gluten sensitivity. So I am now puzzled.
 
nic281979 said:
Hi
Thanks for that i meant basal, i answered the phone as i was typing!
It's not been as stressful, i have tried to stay positive, i didn't want to get myself into a woe is me attitude, finally getting diagnosed and treated and knowing i wasn't imaging how i felt made me more positive. The hardest part is before all of this i had a severe fear of needles- got over that pretty quick!:D
I will have a look at the books.

Thank you
Click to expand...

Welcome to the forum @nic281979

Hope you can get a bolus insulin sorted - T1s should not be started on basal only. There may have been some confusion as you had to wait for confirmation?

Sounds like you’ve made a great start though, and are grabbing the challenge with both hands.

Hope it’s not too difficult balancing the different needs of your diabetes and coeliac requirements. 🙂
 
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