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Any Uk People Joined Celiac Uk


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21 replies to this topic

#1 jhol

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Posted 28 February 2013 - 03:17 AM

joined about 2 weeks ago,

 

 it took me abt 3 weeks to figure out how to join- i am a bit crap on computers though!) only joined for the food directory that you get. im finding it a bit odd. there doesnt seem to be a designated forum like on here and the "meeting room" they have( that doesnt belong to celiac uk) just seems to be questions about food. is that it - or have i just not found the correct place???

 

the other thing is - in the book it said that tesco,s own brand crunchy nut cornflakes are ok to eat. but it says contains barley malt in the indredients. ive had them twice now for breakfast and an hour later had to go to the loo!!  is barley malt considered safe - i thought it wasnt- but i could be wrong!

 

now i dont know if i should be using the book or not , any opinions welcome thanks :)  


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#2 VeggieGal

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Posted 05 March 2013 - 02:45 PM

Hi jhol, Ive joined but like you find its difficult to use and its in need of a forum. The only thing Ive used it for is to try and find a local group so Ill be attending a first meeting at the weekend. They seem pretty friendly on the phone and well organised but really need a forum ..but maybe its me whos not used it properly !

Sorry I have no idea about the barley malt...I assumed it was a no-no but its still all new to me.
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#3 Celiac Mindwarp

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Posted 06 March 2013 - 12:30 AM

Similar experience here. I got the directory, which is good, but discovered I needed a whole food diet anyway so eating naturally gluten-free. I like the magazine for research info. I agree they need an accessible forum. The helpline was useful at the start.

I do find them to be accepting of some things I have found different advice on elsewhere, I struggle with the 20ppm thing. It is a shame they get funded by food companies so much, but maybe the need for advertising makes that inevitable.

I kind of think of my subscription as more of a charity donation.
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- Symptoms from 2001, maybe before. Across 20+ years, these have included, vomiting, D, migraines, headaches, recurrent miscarriage, inflammation problems (failure to heal from injuries) brain fog, anxiety and more!
- Elimination diet using Atkins, 2003 – excluded wheat, caffeine, quorn. 2005, excluded sesame, alcohol
- Started diagnosis route April 2012, blood tests, endoscopy – said negative, gluten challenge, clearly something very wrong, had to stop after 3 weeks.
- Gluten Free, August 2012, Corn Free, September 2012. Removed most processed gluten free foods.
- Genetic testing, December 2012 – negative – Diagnosis – Non Celiac Gluten Intolerance (NCGI)
- Elimination diet, January 2013 – all of the above plus dairy, legumes, all grains, sugar, additives, white potatoes, soy. Reintroducing sloooowly now. Health improving.
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#4 jhol

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Posted 06 March 2013 - 11:27 AM

when i joined it was free - till may i think . i,ll probably pay for the first year and see how it goes. not sure about this barley malt thing- not happy with it, so back to my very expensive small pack of organic cornflakes lol.


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#5 VeggieGal

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Posted 10 March 2013 - 02:46 PM

yes ive joined and its free until may too.

I found this which may be helpful (about apparent safe cereals)
http://glutenfreetra...free-cereal/uk/

not sure I'd take the risk though.
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#6 flowerqueen

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Posted 07 April 2013 - 10:50 PM

Hi VeggieGal,

Yes, I'm a member of Coeliac UK too. I joined approx. 2 years ago. I wondered why they don't have a forum like on here. It seems odd for them not to have one, perhaps we should suggest it(?)

You are right about barley not being suitable for Coeliacs. Is it just their own 'regular' cornflakes? Or is it in the 'free from' isle? I only buy cereal if it's marked as gluten & wheat free, it's far safer as it won't be produced in an area where wheat & gluten produce are present.


joined about 2 weeks ago,
 
 it took me abt 3 weeks to figure out how to join- i am a bit crap on computers though!) only joined for the food directory that you get. im finding it a bit odd. there doesnt seem to be a designated forum like on here and the "meeting room" they have( that doesnt belong to celiac uk) just seems to be questions about food. is that it - or have i just not found the correct place???
 
the other thing is - in the book it said that tesco,s own brand crunchy nut cornflakes are ok to eat. but it says contains barley malt in the indredients. ive had them twice now for breakfast and an hour later had to go to the loo!!  is barley malt considered safe - i thought it wasnt- but i could be wrong!
 
now i dont know if i should be using the book or not , any opinions welcome thanks :)  


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Under active thyroid; diabetic; hiatus hernia; acid reflux; dairy intolerant; arthritis; sciatica due to spine degeneration; diagnosed with coeliac disease November 2011; fibromyalgia; allergic to Thyme & MSG and alcohol. Allergic to TCP antiseptic, and plasters. Taking medication for severe muscle spasms in upper back.
Despite all, remaining positive!

#7 flowerqueen

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Posted 07 April 2013 - 10:54 PM

By the way folks, membership for Coeliac UK is only free for the first six months and you need to have been diagnosed with Coeliacs disease in order to be a member. After that you need to pay per year. I think it's worth it though as you get to access other areas of the website that non-members can't, you also get up-to-date lists of gluten free foods in UK. Also, the money will also help with research.
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Under active thyroid; diabetic; hiatus hernia; acid reflux; dairy intolerant; arthritis; sciatica due to spine degeneration; diagnosed with coeliac disease November 2011; fibromyalgia; allergic to Thyme & MSG and alcohol. Allergic to TCP antiseptic, and plasters. Taking medication for severe muscle spasms in upper back.
Despite all, remaining positive!

#8 VeggieGal

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Posted 08 April 2013 - 12:10 AM

Hi flowerqueen,

Although I'm a free member (think i only got 4 months free) I can't say Ive used them apart from getting in touch with the local sheffield group. Ive found this site so good, quick and supportive so maybe i've just not given coeliac uk a chance yet.
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#9 jhol

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Posted 08 April 2013 - 01:08 AM

hi, 

 

there is a forum of sorts kind of connected to the site. i only found it by googling celiac uk forum - one of the sites that came up said useful links celiac uk. it brings up a page ,scroll down til u find the message board. dont know why they,ve made it so difficult to find. ive found though its mainly food based with people telling you that theyve found a bargain in aldi and such like!!!! very occasionally will someone ask a personal question!!- but thats british people for you lol god knows what they,d make of some of the threads on here ha!

 

hi flower queen. the book says most of the supermarkets own brand cereals are ok to eat even though they all contain barley malt- ive gone back to the cereal in the free from aisle.

i joined and im not celiac - i put on the questionnaire that i was gluten intolerant. having said that i was told that someone from the nearest group would be in touch - they havent. so dont know if its because im not diagnosed or if its coz im a "free member" up to yet .maybe im being a softie and should just contact them..


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#10 flowerqueen

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Posted 08 April 2013 - 01:10 AM

Hi! Coeliac Uk is definitely good for some things. I like this forum though, as there always seems to be someone that knows something extra and usually there's someone around to reply to your questions.



Hi flowerqueen,
Although I'm a free member (think i only got 4 months free) I can't say Ive used them apart from getting in touch with the local sheffield group. Ive found this site so good, quick and supportive so maybe i've just not given coeliac uk a chance yet.


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Under active thyroid; diabetic; hiatus hernia; acid reflux; dairy intolerant; arthritis; sciatica due to spine degeneration; diagnosed with coeliac disease November 2011; fibromyalgia; allergic to Thyme & MSG and alcohol. Allergic to TCP antiseptic, and plasters. Taking medication for severe muscle spasms in upper back.
Despite all, remaining positive!

#11 flowerqueen

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Posted 08 April 2013 - 01:18 AM

I'm very surprised that it says it's suitable if it contains barley. If you look in the front of the directory it tells you that you must not eat it. I certainly wouldn't be prepared to risk it.

I don't think the website is manned as often as other websites. I sent them an email about something and they didn't get back to me and I'm a full member :(

Thanks for info. I will scroll down next time I visit the site to see where the forum is. I do like this one though!

hi, 
 
there is a forum of sorts kind of connected to the site. i only found it by googling celiac uk forum - one of the sites that came up said useful links celiac uk. it brings up a page ,scroll down til u find the message board. dont know why they,ve made it so difficult to find. ive found though its mainly food based with people telling you that theyve found a bargain in aldi and such like!!!! very occasionally will someone ask a personal question!!- but thats british people for you lol god knows what they,d make of some of the threads on here ha!
 
hi flower queen. the book says most of the supermarkets own brand cereals are ok to eat even though they all contain barley malt- ive gone back to the cereal in the free from aisle.
i joined and im not celiac - i put on the questionnaire that i was gluten intolerant. having said that i was told that someone from the nearest group would be in touch - they havent. so dont know if its because im not diagnosed or if its coz im a "free member" up to yet .maybe im being a softie and should just contact them..


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Under active thyroid; diabetic; hiatus hernia; acid reflux; dairy intolerant; arthritis; sciatica due to spine degeneration; diagnosed with coeliac disease November 2011; fibromyalgia; allergic to Thyme & MSG and alcohol. Allergic to TCP antiseptic, and plasters. Taking medication for severe muscle spasms in upper back.
Despite all, remaining positive!

#12 Serenity1366

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Posted 28 June 2013 - 10:14 PM

Yes, I joined Coeliac UK a few weeks ago.  I was so chuffed to receive the Welcome pack, I didn't really read the details of signing up as I wanted to access a part of the site only available to members.  So as I said I was chuffed to receive the Food & Drink Directory.  They sent me a Crossed Grain magazine this week, too.  Which has been a god send; as I have been home sick this week with severe tiredness, I think due to Iron deficiency (awaitng results from full blood test).

 

As for moving around the site and the forum bit, it is a bit confusing, but they say there will be a revamp of the site soon.

 

On another note Juvela sent me two loaves of bread.  Again that was a total surprise. :D

 

Off to the Coeliac Food Fair in Salisbury today B) (I'll added the details if that is ok?) :)

 

The South Wiltshire Food Fair is taking place on Saturday 29 June from 10.30am to 3pm at:

Southern Counties Auction Rooms
Salisbury Livestock Market
Salisbury Road
Netherhampton
Salisbury
SP2 8RH

For more information on this and other Local Group events, visit http://bit.ly/cukevents or email the Local Group at southwilts@coeliac.org.uk.


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Serenity1366

 

 

It is not the strongest of the species that survives, nor the most intelligent that survives. It is the one that is the most adaptable to change.

Charles Darwin

 


#13 designerstubble

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Posted 01 July 2013 - 11:59 PM

Hi
I'm on coeliac uk too. Directory would be useful if I was able to eat processed food! I think coeliac UK is really behind on up to date information although obviously it's better than nothing. I'm like CM and see my membership as more of a donation/ support. I never really use the website much unless its UK food related.
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Diagnosed Celiac Oct 2012 (Blood and Biopsy)
Gluten free / Dairy free / Caffeine / Almost sugar free / Tobacco free 2012. Corn free 2013
Vegetarian since 1986 / Asthmatic since 1990 / Migraines since 1998

 

Symptoms: Classical GI symptoms. Fibromyalgia. Odd pains. Bone aches. Severe headaches. Severe depression. Anxiety. Diagnosed with severe anaemia. Severe Vit D deficiency. Boderline Folate & B12 Defiency.

 

Since being gluten free... initially felt better for a month, still suffer with loose bowels, am currently struggling with many more allergies and intolerances to foods, such as dairy, egg, celery, oranges, tomatoes, quinoa, seeds,... Pressure hives (from Feb 2013) / Having bad leg aches during periods (June 2013)

(Marked in bold, these problems have been resolved)


#14 Serenity1366

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Posted 02 July 2013 - 11:01 AM

I must say I was not impressed with the Food Fair.  It was all cakes, biscuits and cereals.

 

One stall asked me to sample their bread, but did not know what was in it (dried milk powder, when I checked)  it had Country Life butter on it.  Being Lactose Intolerant, I thought I would give it a miss. :rolleyes:

 

And on top of that; the restaurant did not have gluten-free sandwiches or soya milk so I couldn't even have a cup of tea :( .

 

The one and only time I stupidly thought I could eat out and be safe...stupid, stupid, stupid (bangs head against wall).


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Serenity1366

 

 

It is not the strongest of the species that survives, nor the most intelligent that survives. It is the one that is the most adaptable to change.

Charles Darwin

 


#15 jhol

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Posted 02 July 2013 - 12:43 PM

I must say I was not impressed with the Food Fair.  It was all cakes, biscuits and cereals.

 

One stall asked me to sample their bread, but did not know what was in it (dried milk powder, when I checked)  it had Country Life butter on it.  Being Lactose Intolerant, I thought I would give it a miss. :rolleyes:

 

And on top of that; the restaurant did not have gluten-free sandwiches or soya milk so I couldn't even have a cup of tea :( .

 

The one and only time I stupidly thought I could eat out and be safe...stupid, stupid, stupid (bangs head against wall).

 hi , 

i havent been to the site for a while, may have a look later on.the fair doesnt sound good - if you cant get gluten free at a celiac fair where can you get it?? i cant do dairy either or potato-which is in  nearly all gluten free goods.its plain wholefoods for me .


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