It's official I have coeliac too

[JANROU]

Just heard from the GP that my duodenal biopsies are positive for coeliac disease. I know that this isn't the end of the world and loads of people have greater issues/problems than this but just been to the supermarket and have ended up feeling sorry for myself. Think I need a kick up the butt and a reality check and thought that you could all help out.



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[iHs]

Hi

The Asian supermarkets sell a lot of flours that are gluten free. I make my OH a nice rice flour, cassava flour (tapioca), loaf of bread in a breadmaker. He goes to Lidl and gets their rice cakes as they are good value. Some CCGs will prescribe gluten free food but some won't. If yours will, then Juvela breadmix is good in a breadmaker and the rolls are not bad. Sainsburys do a good range of gluten free stuff. Have a look

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[robert72]

Sorry to hear that JANROU - I have to say that I find it a lot easier to manage than T1.

It all seemed a bit of a shock at first, but the immediate benefit was to be able to stop eating gluten and stop feeling so ill. If only there was such a simple remedy for T1.

My biggest problem with it is going to restaurants.

 

[Scandichic]

Have you thought about LCHF? I love this diet and I may be mistaken but isn't it coeliac friendly (no pasta, wheat, bread, rice and potatoes) ? Lots of variety!

 

[Robinredbreast]

Hi so sorry to hear of your Coeliac diagnosis, I have Coeliac too, about 18 months now and it's a 'double whammy'
It's hard to get your head around it, as it's a bit of a shock,but in time you find it easier.
You should get an appointment to see a dietician at the hospital. You will also get some freebies from GF companies, like Glutafin, and Juvela..
Most supermarkets have GF aisles, Sainsbury's, Morrison's and Asda, and two of these have a small freezer section.

Did you have any symptoms? if you did, you should start to feel much better very soon..

Try not to worry too much, it is manageable.

Take care and best wishes.

 

[JANROU]

No symptoms, son was ill at beginning of year and diagnosed in February, again no real symptoms of coeliac but iron levels very low. Family members advised to be tested, hubby ok my TTG was high had endoscopy beginning of this month and spoke to GP today. Trying to persuade daughter that she should be tested but she has a 5 week old baby and it isn't high on her list of priorities. Think I'm feeling guilty that I've past this on to my son and dread that my daughter could have it too and pass it to her children. Just feeling sorry for myself but need to snap out of it and get on with life.
Thanks everyone for your prompt replies it's made me realise that there are people out there who will listen and not press judgement, just supply a way of expressing my frustration xx



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[Robinredbreast]

No symptoms, son was ill at beginning of year and diagnosed in February, again no real symptoms of coeliac but iron levels very low. Family members advised to be tested, hubby ok my TTG was high had endoscopy beginning of this month and spoke to GP today. Trying to persuade daughter that she should be tested but she has a 5 week old baby and it isn't high on her list of priorities. Think I'm feeling guilty that I've past this on to my son and dread that my daughter could have it too and pass it to her children. Just feeling sorry for myself but need to snap out of it and get on with life.
Thanks everyone for your prompt replies it's made me realise that there are people out there who will listen and not press judgement, just supply a way of expressing my frustration xx



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Hi again, my daughter was tested and she was fine and actually now prefers eating the GF sausages and pasta ( I only have a very small amount of pasta, as it's higher in carbs,) . You have absolutely nothing to be guilty about, it's another auto immune condition as Type 1 and Coeliac disease are linked.
I had symptoms, but many don't have any symptoms at all it's good that you didn't suffer prior to diagnosis. Have a google about it , as there are some informative and helpful websites online. Best wishes

 

[noblehead]

Sorry to hear about your diagnosis, the big supermarkets always seem to have well stocked aisles full of gluten-free products so I'm sure you'll find suitable replacements for your normal diet, I'm sure there's a correlation between type 1 diabetes and coeliac disease although I may be mistaken.

 

[robert72]

Sorry to hear about your diagnosis, the big supermarkets always seem to have well stocked aisles full of gluten-free products so I'm sure you'll find suitable replacements for your normal diet, I'm sure there's a correlation between type 1 diabetes and coeliac disease although I may be mistaken.

You're right Nigel - between 2-10% of coeliacs also have T1
https://www.coeliac.org.uk/coeliac-disease/associated-conditions-and-complications/type-1-diabetes/

 

[Scandichic]

No symptoms, son was ill at beginning of year and diagnosed in February, again no real symptoms of coeliac but iron levels very low. Family members advised to be tested, hubby ok my TTG was high had endoscopy beginning of this month and spoke to GP today. Trying to persuade daughter that she should be tested but she has a 5 week old baby and it isn't high on her list of priorities. Think I'm feeling guilty that I've past this on to my son and dread that my daughter could have it too and pass it to her children. Just feeling sorry for myself but need to snap out of it and get on with life.
Thanks everyone for your prompt replies it's made me realise that there are people out there who will listen and not press judgement, just supply a way of expressing my frustration xx



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Ok, so I've got a whole host of stuff inherited from my mums side of the family and I certainly don't hold my mother responsible and I dare say your daughter and son don't either! We can't help our genes! You cannot control this so let it go. I'm sure you're fab and your kids love you! You are allowed to feel sorry for yourself! That's what this forums for! Big hugx

 

[noblehead]

You're right Nigel - between 2-10% of coeliacs also have T1
https://www.coeliac.org.uk/coeliac-disease/associated-conditions-and-complications/type-1-diabetes/

Cheers for the confirmation and the link Rob

 

[conniecar]

Me too. Type 1 for 43, epileptic for the same, under active thyroid then diagnosed with coeliac in June. I’m ok most of the time but it’s depressing when you’re out and all that’s on offer is a brownie! I’ve felt very upset at times and had to suffer a vile gf microwave macaroni cheese at my in-laws recently,because I was going low and they were eating ‘real’ food. I’ve also found it difficult to quiz cafes about ingredients and contamination, as I’ve always just got on quietly with my diabetes and no one needs to be bothered about it. Had a Dupuytrens Contracture procedure on my hand yesterday ( horrible ) and it all got a bit much on the way to hospital! I’ve a coeliac and diabetes dietician appointment this week, cataract one, hand one and pelvic scan. Did much sobbing and erratic lane changing in my little Morris Minor! But..... we have no choice and this forum makes us know we are not alone. This week I needed a hug and sympathy, next week I’ll be fine again. It’s just how we cope with it all, it’s never plain sailing. I’ve just checked my Libre and it’s gone down a bit - so that’s cheered me up. So chin up, we all get there but I agree it’s ok to be fed up about it xxxxxx

 

[conniecar]

Ok, so I've got a whole host of stuff inherited from my mums side of the family and I certainly don't hold my mother responsible and I dare say your daughter and son don't either! We can't help our genes! You cannot control this so let it go. I'm sure you're fab and your kids love you! You are allowed to feel sorry for yourself! That's what this forums for! Big hugx

Anyway, is it always genetic? I’ve assumed mine is because of being type 1 and having thyroid disease x

 

[Diakat]

@conniecar you’ve replies to two old threads today, it might be worth staring a new thread with your coeliac questions.

 

[DCUKMod]

Anyway, is it always genetic? I’ve assumed mine is because of being type 1 and having thyroid disease x

To be honest, I've learned in my life for things like diabetes, thyroid and so on, there's not too much to be gained by trying to work out why something happened. I find it more productive to try to look to the future and try to work out how to make the best of the position I find myself in. Of course, sometimes that's easier then others.

You seem to have lot on your plate at the moment. I'm sure the Coeliac (and other conditions) diagnosis was quite unwelcome in your world. That is completely understandable, when these things appear to stack up to conspire against us.

I've never made a secret of the fact that when the Endo told me I needed to go GF, I thought it's be a cinche, as i was already living a low carb lifestyle, but I have to say I just wan't prepared for where the dratted gluten lurks - in some of the most unexpected places and products.

In truth in the early days I just simplified my eating even more than it was already, so that I could really control the gluten exclusion, and from there it got easier.

Did you manage to get any prep done leading up to your hand op, like batch cooking and freezing? My OH is the main cook in our house, so I do pretty well if I'm incapacitated, but even so, if I know something's coming up, I try to lay in a few things I can go to easily, if he doesn't feel like cooking, or is away. It just helps settle my mind.

Take it steady Connie. I hope your hand heals quickly and you can get back into some sort of comfort zone. Pain sucks.

 

[conniecar]

Just found these lovely messages. Thank you so much. You’re right - we just have to take it easy and not dwell on things. I have a lovely 20 year old son who seems fit and well but recently said he felt ill and has lost weight. Obviously you jump to horrible conclusions. Anyway he is well, he’s just joined a gym, burning the candle at both ends and eats mainly baked beans ( student .) But that worry that you’ve inflicted your dodgy genes on your kids is ever present. My poor Dad is also type 1 and we also share exactly the same issues with our hands - I’m sure there have been many times when he’s questioned why it was just us two in the family. He’s a great ally however

 

[DCUKMod]

Just found these lovely messages. Thank you so much. You’re right - we just have to take it easy and not dwell on things. I have a lovely 20 year old son who seems fit and well but recently said he felt ill and has lost weight. Obviously you jump to horrible conclusions. Anyway he is well, he’s just joined a gym, burning the candle at both ends and eats mainly baked beans ( student .) But that worry that you’ve inflicted your dodgy genes on your kids is ever present. My poor Dad is also type 1 and we also share exactly the same issues with our hands - I’m sure there have been many times when he’s questioned why it was just us two in the family. He’s a great ally however

How is your healing coming along Connie?

 

[conniecar]

Slowly. I seem to have stomach issues now where as I didn’t before, just nerve and bone pain. I thought that would go but it’s lingering.....is fibromyalgia linked to all of this? Best not Google Thanks for asking though x

 

[DCUKMod]

Slowly. I seem to have stomach issues now where as I didn’t before, just nerve and bone pain. I thought that would go but it’s lingering.....is fibromyalgia linked to all of this? Best not Google Thanks for asking though x

From my reading, fibromyalgia tends to be a diagnosis of exclusion - in other words, they discount lots of stuff, then fibromyalgia is just about what's left.

Have you had any gluten creep? When a manufacturer changes their recipe/ingredients, they aren't obliged to alert users in any way, except change the ingredients list in the usual way. Could any of your usual staples have changed?