Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Any Uk People Joined Celiac Uk
0

22 posts in this topic

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 :)  

0

Share this post


Link to post
Share on other sites


Ads by Google:

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites




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 :)  

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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..

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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..

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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).

0

Share this post


Link to post
Share on other sites

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 .

0

Share this post


Link to post
Share on other sites

 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 .

lol,  yes starch for me too.   I registered with Juvela, they have sent me a couple of loaves of bread and today I received a starter pack.  Which I think is really nice, I know they are promoting their products, but I still think it's nice.

0

Share this post


Link to post
Share on other sites

Hi I joined - I'm in Yorkshire in the UK  :)

 

I was diagnosed 8 months ago whilst I was away in NZ.  I also can't eat dairy or soya which is giving me a bit of trouble finding things.  I've just come back from being overseas so getting used to the UK supermarket choices (I ate gluten-containing foods before).  Shame about the food fair - how silly for them not to have allergen free foods in the coffee shop!!

 

Heather

0

Share this post


Link to post
Share on other sites

Hi heather.....welcome!

I'm from yorkshire (sheffield) and nearly 8 months into it too. Ive let my membership lapse on coeliac uk, its ok but this site has been far more valuable to me since diagnosis but I may join it again at some point. Yes I'm the same, and had to cut out dairy and soya, but there is alternatives but its finding out what works best for you. All the best . Helen

0

Share this post


Link to post
Share on other sites

I just had their latest magazine, and they are shortly launching an app version of their book listing gluten-free products. I quite like that idea, and it means it will be kept up to date, hopefully.

If only we could pesuade them to break it down to avoid dairy and soy, we'd be sorted :)

0

Share this post


Link to post
Share on other sites

Yes definately cmw! To be honest, I've got their food directory but have never used it...what do you think to it? I've 'liked' their facebook page but they recently gave questionable info about what they class as gluten free beer and my dietician said they were promoting kelloggs rice krispies as gluten-free but as far as I can tell they're not suitable ?!? Maybe I should read it and see for myself lol

0

Share this post


Link to post
Share on other sites

 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 .

 

The situation for those of us with fewer allergies is perhaps worse. Our most common options are packed with sugar and starch, which lead happy consumers down the path to diabetes.

0

Share this post


Link to post
Share on other sites

This thread is also old but I would like to contribute and corroborate the fact that coeliac uk are very behind with their information- and often inaccurate with respect to foods one can use which in other parts of world are taken to be dangerous for celiacs. They've launched their new website , but I haven't had a chance to study it in detail yet, I hope it has improved.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,092
    • Total Posts
      920,314
  • Topics

  • Posts

    • WOW.  That looks eerily familiar.  Last December the temporary provider here at my local (rural) clinic gave me doxycycline to experiment with, but it was a mere ten milligrams.  Lol, no wonder it didn't help!  I'm glad you're feeling better.
    • I got cross contaminated some time ago & the rash came back pretty badly. I've attached a photo taken on June 11th of my back. It was also in my scalp, around my neck, on my front, shoulders, inner wrists and more.   Tonight I am not itching at all! I haven't itched all day long!!!! I can't take Dapsone because I'm allergic to sulfa drugs & Dapsone is a sulfa drug. Obviously that means I also can't take any of the other sulfa drugs that are used to treat dh after Dapsone is not an option. After those comes tetracycline. I really needed some relief! I began researching the dosage & particulars on tetracycline for dh. Extensive & exhaustive research did not pan out. The best I could find was treating Bullous phemphigoid. That said something like 500mg of tetracycline 4 times per day and about an equal amount of niacinimide. I really didn't want to take that much medication and in such strong doses. So my doctor (my PC doc) & I began experimenting. We tried Doxycycline 100mg twice a day. It seemed to be helping some but it just wasn't enough. Then we upped it to 200mg Doxycycline twice per day. It has taken about 5 days of that & I sit here not itching all day for the first time in a long, long time! This may not work for everyone. I did want to post it though as it is, at present, working for me. I am not thrilled at taking it but I have toughed this rash out before for years with no meds and I just couldn't do it again.
    • I laughed out loud at the 'little notebook' comment!😂 It has been interesting to see how much progress has actually been made over the past 10 years that there is even a notebook to be offered or a restaurant to eat in that will accommodate our 'allergy'. 10 years ago I feared that I would never eat in a restaurant again.  But the notebook comment is spot on.  Hopefully within the next 10 years restaurants will evolve enough to offer us a menu that clearly lists the delicious and extensive offerings that they have lovingly prepared just for us...and not just an ingredient list with nutritional values that take longer to read than War and Peace.   I am grateful that there are places to go that at least make the effort.  Who knows?  Eventually there may be restaurants which will have to offer menus with GLUTEN options available!
    • Thanks for posting this Adrien, it's a great list and I and others will appreciate the effort and the thought behind it. I loved my time in Malaysia and I'm glad I sampled all the food I could whilst I was still on an unrestricted diet. The good thing is that, like you say, some of the nice Malay foods are still ok. As a backpacker I survived on a lot of nasi goreng and laksa, nice to think if I return there I could still do the same Terima kasih!
    • I have posted on here before. DQ2, brother with celiac, DGP iGA was the only mildly elevated test. Was gluten-free so did 6 week challenge last winter. Negative biopsy. I am gluten-free now but do go out to eat. Prior to the challenge my health was good. Since then I have: Chest pain, pain between shoulder blades, periods of shortness of breath, heart palpitations, one instance of a heart arrythmia episode, neck is tender to touch on one side (they kept saying sinuses or TMJ which my dentist vetoed) ear ache, bowels never sink. Numbness and tingling. Blood pressure variations. Could be doing chores and feel dizzy and it might be 84/52.  not super low, but not typical for me if I'm running around the house.While other days I am mildly hypertensive. Recently lost 5 lbs in 8 days without trying. Recently electrolytes were low, alkaline phosphatese was low. Ferritin started dropping so started liquid iron 2-3 times per day 4 months ago. Primary watching that, I am not anemic but we are nowhere near iron overload either.  GI doc was a dick. Did not even know DGP replaced older tests and he was very condescending When I begged him for help recently and told me to get a second opinion which is exactly what I plan on doing.  I now have pain in my upper GI area. It is tender to touch. I had my gallbladder out in 97 along with a stone and infection in my bile duct. It hurts in this area. Pancreatic enzymes look fine, liver enzymes fine. Pancreatic ultrasound fine. I will now be doing a EUS Soon to look at bile duct, pancreas and liver.   so a typical day for me is that I might feel fine for a while and then suddenly feel like I'm going to pass out. really dizzy, numbness in odd places, like my body has been hijacked. I will typically eat a bunch of food something high protein and in about an hour or so I start to feel better. However, then my upper stomach starts to hurt in place of the passing out feeling. blood sugars are also normal. After getting the " it must be panic attacks" and condescending looks a million times my primary finally ordered an ultrasound of my sore neck and there is an abnormality in my thyroid which she says looks like possibly Hashti's. Except for one time, all my serum TSH tests were normal. We have more blood work on Monday. As I have not put on any weight and there are other symptoms that are closer to Graves.  Has anyone else had any thyroid issues that followed doing a gluten challenge?  where is your stomach pain? Do you have it above or below your belly button? Mine feels like it's in the pancreas area, like 2-3 inches above the belly button and when I push on it it's tender, but not all the time. sometimes i feel it in my back. 
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

    There are no registered users currently online

  • Member Statistics

    • Total Members
      61,123
    • Most Online
      1,763

    Newest Member
    ForeverYoung&GlutenFree
    Joined