Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Any Uk People Joined Celiac Uk


jhol

Recommended Posts

jhol Enthusiast

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 :)  


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



VeggieGal Contributor

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.

Celiac Mindwarp Community Regular

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.

jhol Enthusiast

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.

VeggieGal Contributor

yes ive joined and its free until may too.

I found this which may be helpful (about apparent safe cereals)

Open Original Shared Link

not sure I'd take the risk though.

  • 4 weeks later...
flowerqueen Community Regular

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 :)  

flowerqueen Community Regular

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



VeggieGal Contributor

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.

jhol Enthusiast

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..

flowerqueen Community Regular

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.

flowerqueen Community Regular

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..

  • 2 months later...
Serenity1366 Newbie

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 Open Original Shared Link or email the Local Group at southwilts@coeliac.org.uk.

designerstubble Enthusiast

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.

Serenity1366 Newbie

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).

jhol Enthusiast

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 .

Serenity1366 Newbie

 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.

  • 4 weeks later...
hbunting86 Newbie

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

VeggieGal Contributor

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

Celiac Mindwarp Community Regular

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 :)

VeggieGal Contributor

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

  • 5 weeks later...
stormbind Newbie

 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.

  • 3 months later...
MGR Apprentice

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.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Scott Adams replied to Jhona's topic in Introduce Yourself / Share Stuff
      35

      Does anyone here also have Afib

    2. - Jacki Espo replied to CDFAMILY's topic in Related Issues & Disorders
      5

      Covid caused reoccurrence of DH without eating gluten

    3. - Mari replied to tiffanygosci's topic in Coping with Celiac Disease
      1

      New Celiac Mama in My 30s

    4. - Mari replied to Jmartes71's topic in Coping with Celiac Disease
      2

      My only proof


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,959
    • Most Online (within 30 mins)
      7,748

    jenny44
    Newest Member
    jenny44
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      If black seed oil is working for his Afib, stick to it, but if not, I can say that ablation therapy is no big deal--my mother was out of the procedure in about 1 hour and went home that evening, and had zero negative effects from the treatment. PS - I would recommend that your husband get an Apple watch to monitor his Afib--there is an app and it will take readings 24/7 and give reports on how much of the time he's in it. Actual data like this should be what should guide his treatment.
    • Jacki Espo
      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.