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New To This! Any Celiacs/gluten Free In Uk?

Emma-jane88

By Emma-jane88
in Meet Up Room

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Emma-jane88 Newbie
Emma-jane88
Posted

Hello im Emma, 26 (nearly 27) i was diagnosed with celiac's  around 3 years ago but the problems seem to have been there for most of my life. well as far back as i can remember. i just wondered if there was anyone else on here from the uk to exchange tips/support?? we all know how hard it can be! Thanks for reading! Emma x x 

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cristiana Veteran
cristiana
Posted

Welcome to the Forum, Emma!

 

I, too, am British - and there are several of us that use and contribute to this site, although you will notice most contributors are from the States, so I tend to drop the mystery 'o' in the British spelling of Coeliac when I type (and after all this time I am not sure why we include it!)  

 

Are you a member of Coeliac UK? They do a great gluten-free directory which you can access online if you are a member.  

 

I'll keep an eye out for your posts just in case you have any particular questions pertaining to this side of the Atlantic.

 

I was diagnosed a year after you but like you can look back at problems before that.  I honestly don't know how I would have managed without this website.  I still feel I have odd symptoms, I think my greatest challenge is knowing what to attribute to celiac disease and what to attribute to middle age!  You won't have that problem yet.... 

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  • 1 year later...
AM63 Rookie
AM63
Posted

Hi to you both I too am from UK,this site has been fantastic, I am going through diagnosis at the moment hospital appointment in September, but I am either Coeliac or gluten sensitive,I am finding it hard at the moment and feeling quite ill most of the time. Plus my work are not very understanding as I do have unpleasant symptoms which stop me from working. Still I am getting nearer to it being sorted I hope. I have had lots of helpful tips from here so far and am sure I will get more.

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  • 2 weeks later...
Jmg Mentor
Jmg
Posted

Another Brit here. As above, I've found this a fantastic site for both information and support. I've learned a lot about odd symptoms which I would never have thought to attribute to gluten from here. It's so helpful because even now I find it bizarre that I could've spent so long, with so many different symptoms without realising they were in any way related. 

On 4/18/2015 at 7:33 PM, cristiana said:

I think my greatest challenge is knowing what to attribute to celiac disease and what to attribute to middle age!

:D I seem to have a default now which blames everything on gluten. The fall in the pound, assassination of JFK, any football tournament performance by England since 1966, all gluten related. 

Good luck with the diagnostic process. You can look forward to feeling great once they've finally stopped testing. 

 

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cristiana Veteran
cristiana
Posted

Greetings to you all.

 

On 8/13/2016 at 8:07 PM, Jmg said:

 I seem to have a default now which blames everything on gluten. The fall in the pound, assassination of JFK, any football tournament performance by England since 1966, all gluten related. 

 

Jmg - your comment about blaming things on gluten did amuse me. I am sitting here looking at a field of wheat beyond the garden and the sky above is steely grey. and it is raining. Is there a connection?!

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cristiana Veteran
cristiana
Posted
Just now, cristiana said:

Greetings to you all.

 

Jmg - your comment about blaming things on gluten did amuse me. I am sitting here looking at a field of wheat beyond the garden and the sky above is steely grey. And it is raining. Is there a connection?!

 

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Jmg Mentor
Jmg
Posted
28 minutes ago, cristiana said:

Greetings to you all.

 

Jmg - your comment about blaming things on gluten did amuse me. I am sitting here looking at a field of wheat beyond the garden and the sky above is steely grey. and it is raining. Is there a connection?!

Absolutely, somewhere on pubmed there's a paper detailing how airborne gluten irritates the sensitive cloud layers producing the same endless downpour of a reaction that I'm currently experiencing sat in a caravan in north Wales. Meanwhile, in tin hat land, an alternative hypothesis is forming, that gluten sensitivity itself causes rain, flooding, the loss of red squirrels and Dutch elm disease. 

 

The truth is out there ?

 

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notme Experienced
notme
Posted

LOLZ!

and don't forget the bats!!  or is that just this side of the atlantic??   :D

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cristiana Veteran
cristiana
Posted
18 hours ago, notme! said:

LOLZ!

and don't forget the bats!!  or is that just this side of the atlantic??   :D

Cricket bats maybe.

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  • 1 month later...
Mortiis Rookie
Mortiis
Posted

Hi,  I've been gluten free for about 4-5 months, self diagnosed celiac/gluten intolerance and it's really helped things for the most part but been persuaded to get the proper tests done. Just wondering what it's like/anything I need to know. For the last 5-10 years I've been going to the doctor they've been useless, didn't even suggest gluten even after I described the symptoms many times and they haven't been much help since I went back after knowing gluten was involved.

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AM63 Rookie
AM63
Posted

Hi mortis I am the same had symptoms for many years but gps did nothing I have finally been to see the hospital consultant and am now back on gluten waiting for my gastroscopy in a few weeks do not give up it is worth it in the end. Going back onto gluten has been horrific but at the end I will get a proper diagnosis and help.

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Mortiis Rookie
Mortiis
Posted

I didn't even realise I'd have to go back on gluten for the tests, I'd prefer not to if possible, is there any real need to do the tests?

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AM63 Rookie
AM63
Posted

To get a proper diagnosis it has to be a gastroscopy and you need to eat gluten to get a proper result. It is up to you but i would think about it and get some more advice as if it is ceoliac you would need to have check ups. I hope you get the help you need.

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Mortiis Rookie
Mortiis
Posted

I'll talk to the doctor but I don't think I'll go for tests, I don't care about living long soI'm not bothered about needing checkups and stuff like that, I just don't want to deal with the problems caused by gluten anymore

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  • 1 month later...
Jmg Mentor
Jmg
Posted

Couple of new treats for UK coeliacs and gluten-free people

Gluten Free Berry Christmas Cheesecake - Tesco - I am on my 3rd already! Cheesecake how I remember it :D More listed here: http://glutenfreecuppatea.co.uk/2015/11/15/what-gluten-free-christmas-products-are-tesco-selling-this-year/  M&S also do a small new york cheesecake which I loved. http://kevssnackreviews.blogspot.co.uk/2016/05/marks-Spencer-gluten-free-new-york-cheesecake.html

Big shout out to iced mince pies from sainsburys https://www.google.co.uk/url?sa=t&rct=j&q=&esrc=s&source=web&celiac disease=3&cad=rja&uact=8&ved=0ahUKEwjewcb0w9_QAhWKIcAKHQZzBd4QFggqMAI&url=http%3A%2F%2Fwww.sainsburys.co.uk%2Fshop%2Fgb%2Fgroceries%2Fsainsburys-deliciously-freefrom-iced-mince-pies-x4-220g&usg=AFQjCNGun7FBFHRVqpMGSY5DdTA1nbizgA&sig2=KXMi1ZOL_s8HTUFEXmSDZg

The healthy eating regime is working out really well...

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Jmg Mentor
Jmg
Posted
On 10/8/2016 at 0:28 PM, Mortiis said:

Hi,  I've been gluten free for about 4-5 months, self diagnosed celiac/gluten intolerance and it's really helped things for the most part but been persuaded to get the proper tests done. Just wondering what it's like/anything I need to know. For the last 5-10 years I've been going to the doctor they've been useless, didn't even suggest gluten even after I described the symptoms many times and they haven't been much help since I went back after knowing gluten was involved.

Lots in the same boat sadly. Ignorance of this is high in UK medical establishment, certainly at GP level. I got wrong information, repeatedly...

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  • 2 weeks later...
cristiana Veteran
cristiana
Posted
On 12/6/2016 at 0:08 PM, Jmg said:

Couple of new treats for UK coeliacs and gluten-free people

Gluten Free Berry Christmas Cheesecake - Tesco - I am on my 3rd already! Cheesecake how I remember it :D More listed here: http://glutenfreecuppatea.co.uk/2015/11/15/what-gluten-free-christmas-products-are-tesco-selling-this-year/  M&S also do a small new york cheesecake which I loved. http://kevssnackreviews.blogspot.co.uk/2016/05/marks-Spencer-gluten-free-new-york-cheesecake.html

Big shout out to iced mince pies from sainsburys https://www.google.co.uk/url?sa=t&rct=j&q=&esrc=s&source=web&celiac disease=3&cad=rja&uact=8&ved=0ahUKEwjewcb0w9_QAhWKIcAKHQZzBd4QFggqMAI&url=http%3A%2F%2Fwww.sainsburys.co.uk%2Fshop%2Fgb%2Fgroceries%2Fsainsburys-deliciously-freefrom-iced-mince-pies-x4-220g&usg=AFQjCNGun7FBFHRVqpMGSY5DdTA1nbizgA&sig2=KXMi1ZOL_s8HTUFEXmSDZg

The healthy eating regime is working out really well...

Wow - thanks for this tip off. I miss cheesecake...

The iced mince pies are delicious!

Sainsbury's gluten-free tortellini are a new find.  Really good but only cook them for the 1 minute - they start to go too soft otherwise.

What I do miss is Cadbury's Fruit and Nut.  I wish they didn't have to put wheat in their chocolate - it's odd, because it is only in some of it...

 

 

 

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cristiana Veteran
cristiana
Posted
On 12/6/2016 at 0:10 PM, Jmg said:

Lots in the same boat sadly. Ignorance of this is high in UK medical establishment, certainly at GP level. I got wrong information, repeatedly...

 Now heard of two people who have been having symptoms but the tests ended at stomach level, they took no samples of the small intestine. I wonder how common that is - how many people could be slipping through the net? 

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  • 3 weeks later...
Jmg Mentor
Jmg
Posted
On 12/17/2016 at 10:08 PM, cristiana said:

 What I do miss is Cadbury's Fruit and Nut.  I wish they didn't have to put wheat in their chocolate - it's odd, because it is only in some of it...

 

 

 

Oh yes. I've gradually moved more towards dark chocolate as I've got older, I like the Moser Roth from Aldi for instance: https://www.aldi.co.uk/p/63574/0 and tell myself its in some way healthier... But every so often I'll get a craving for old school British milk chocolate, cadburys, galaxy or even a raisin and biscuit yorkie.

From Cadburys I still occasionally eat flake, cruchie, Twirl and Wispa which are all on the safe list. None of them as nice as a bar of dairy milk or fruit and nut.

 

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cristiana Veteran
cristiana
Posted

Good news for you JMG - this Christmas I found a big bag of Cadbury's Milk Chocolate chunks wrapped individually and gluten was not mentioned on the ingredients list.  They were delicious!  So lovely to eat Dairy Milk again.  Let's hope the fruit and nut varieties follow suit.  

And now I need to go on a diet!

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Jmg Mentor
Jmg
Posted

Is it these by any chance?

http://groceries.iceland.co.uk/cadbury-dairy-milk-christmas-chocolate-chunks-166g/p/48609 

checked the ingredients, like you say look safe. I just need to wait till next Christmas.  Doh!

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cristiana Veteran
cristiana
Posted

Yes, well, sort of - but my pack looked like this.

http://www.tesco.com/groceries/product/details/?id=293498895

Good old Tescos! But I see that like those you have posted, they are a limited production run.  Maybe that is a blessing in disguise.  Although you may find there are some in the shop still.  We bought ours only a few days ago in Havant (I see thousands of coeliacs converging on Tescos Havant as I type!).

My one gripe with the supermarkets at the moment is they seem to be producing more and more biscuits and cookies with oat flour.  I'm one of those coeliacs who has a real problem with oats, unfortunately - odd, because before I went gluten-free I used to eat them for England (and Scotland!)  I feel like writing to them and asking them to use other ingredients but then I look at my figure and think, no, maybe this too is a blessing in disguise!

 

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Jmg Mentor
Jmg
Posted

I shall scour my local tescos and report back...  On my last trip I got the last gluten-free xmas pudding and thus saved Christmas, so I'm on something of a roll, gluten free of course.

I know what you mean about the oats, after I started the diet I could notice when I'd had them and thought I'd have to exclude them altogether. I did exclude almost all prcessed food for a few months but was happily able to reintroduce without too many problems.

Sometime now I'll get twinges, a slight recurrence of my eye issue or chest pain and wonder whether I've had a very small amount of gluten (from a shared kitchen) or whether the oats in the biscuits are still an issue. As yet its not been enough for me to ditch them however, especially the ginger stem ones from Asda or the cranberry and white chocolate ones from tesco. I think having given up so much food and no longer drinking either that sugary snacks are my last bit of indulgence. I figure the wait I lost from gluten bloat gives me  a bit of leeway too :)

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cristiana Veteran
cristiana
Posted

Sorry to go slightly off piste but what is your eye issue, JMG, if you don't mind my asking? My right one isn't quite right since I got ill although I pass my eye tests and had a retinal scan an all appears well.  Oh - and an MRI.  I am no stranger to tests!

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Jmg Mentor
Jmg
Posted
On 1/5/2017 at 5:22 PM, cristiana said:

Sorry to go slightly off piste but what is your eye issue, JMG, if you don't mind my asking? My right one isn't quite right since I got ill although I pass my eye tests and had a retinal scan an all appears well.  Oh - and an MRI.  I am no stranger to tests!

I get these weird grey patches on my vision. The other day it was like my entire vision was greyed out in my right eye with the exception of a small 'hole' in the right hand side, which I could see through. That was more extreme, sometimes its just a patch which is obscured. 

It's a freaky and frankly unpleasant experience although it never lasts too long. I went to the opticians years ago convinced I was going blind, or perhaps had early stage diabetes, he checked me out as aok but the incidences continued. I had so many other things going on I didn't think much about it, was either too depressed from the brain fog or scared from the chest pain. :(

Like so many other things it mostly cleared up once i changed my diet. My best guess is that its optic neuritis, which could be a precursor to MS, but luckily does appear to be linked with gluten sensititivity also.

I also get a bit of blurriness, but that could just be age. I pass all my eye tests also, but next time I may wind up with reading glasses.

 

 

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