Posted: Mon Jul 30, 2007 8:51 pm Post subject: Coeliac Society in Bulgaria
The Coeliac Society here in BG has folded. (it was useless anyway, no website, no message board, no mail was ever answered even with an SAE and written in Bulgarian).
If ever a country needs one it's here. The doctors here informed me when i took my Coeliac husband in to hospital 2 days ago that they have, "lots of Coeliac children in Bulgaria but we do not have Coeliac adults"!!!!
This is VERY alarming as Coeliac Disease is an incurable lifelong condition and hereditary, we don't 'outgrow' it. Up until 10 years ago it was thought to be a childhood condition in the UK too, and was supposedly very rare (1-1000 people), now we know it's 1-82 in Europe and the Bulgarians eat a LOT of bread and pizza and use a lot of dairy products, i see a lot of people walking with sticks here and obviously arthritic, this is symptomatic of CD. They are going to be dying early and undiagnosed, the likelihood is their children will die early undiagnosed too. We need to raise awareness over here and supply a Bulgarian Message board and website like the one we still run in the UK (it has 10,000 hits a day). At present there is no communication between Coeliacs in Bulgaria, and none between Bulgarian Coeliacs and the outside world. This is not good.
We have decided if anyone can take the job on it's us. We ran the Coeliac Awareness Charity in Britain until we gave it to Coeliac UK to take over.
Does anyone know how i would go about applying for non profit making Charity status for this kind of thing in Bulgaria? I do not want a British based charity as we live here full time and what would be the point? Any pointers in the right direction would be gratefully received.
On another note (kinda) to the Coeliacs that use this board you can go to Aptekas here now and ask for 'hrani bez gluten'. This is what the specialist told me, that we CAN get gluten free food here but not from all chemists.
Last edited by SillyYak on Mon Jul 30, 2007 8:58 pm; edited 3 times in total
Nice one Scot. How quick are you? I'd barely typed...
I've already contacted the AOECS and will email my lawyer tomorrow regarding setting up a charity, if there are any lawyers who use this board can they contact me if they can help?
I will need a translation service too so that the whole website will be bi lingual. I think as Bulgarians become more 'high tech' they will 'google' and find us just like the Coeliacs in the UK find the UK site. The average age for diagnosis in the UK is mid 40's, i don't know how many high tech 40+ Bulgarians there are but i'm sure that number will grow over the years.
I can also leaflet major gastro's and hospitals with up to date statistics and symptoms and diagnostic procedures, that will hopefully get more people diagnosed, once diagnosed they will need advice. Even in the UK doctors often give incorrect advice which means the average time for diagnosis in the UK is 13 years !!!
Was thinking about the media this morning. Am busy compiling 2 leaflets for translation with a team of Coeliacs in the UK:
1) For the medical profession with:
up to date stats,
latest diagnostic procedures,
up to date symptoms (it was thought only underweight children had it and got 'cured' as they got older but the symptoms return in the 40's and the damage is then already done.)
follow up treatment
Connecting medical conditions, Diabetes 1 and 2, Autism, anaemia, schizophrenia, liver probs (my mother died of this one, only drank at xmas), osteoporosis, bad teeth (low tooth enamel) diahorrhea, constipation, obesity, low weight gain, sickness, headaches, poor vision, infertility...... etc
The address and online resource for the European Coeliac Association which is amalgamating all the Coeliac Societies in Europe
2) One for possible Coeliacs with:
what to ask for to find out
what not to do (go gluten free before diagnosis)
getting the whole family tested
where to get GF food
where to eat out and what to ask for
what products with hidden gluten (like soy sauce which has barley in it)
the codex alimentarius situation
These need to be precise (attention span of coeliacs and busy doctors !!!???) easily printed on one A4 page and translated and thrown at newspapers, radio, tV, hospitals, doctors/dentists surgeries etc. I did this in the UK and got Woman magazine, Daily Record 2 page spread in Scotland and a John Peel interview. Just gotta hot up on me Bulgarian double quick.
Have tried to find the diabetes society in Bulgaria via google but can only find UK based groups. They won't be able to help me with helpful tips on getting a charity started here.
The fact that there are so many blind children here also confirms my belief that CD (coeliac disease) is rife in Bulgaria, one of the main symptoms of CD is Diabetes in untreated CD.
All good fun. Have barely slept for thinking about all the things that need doing. Luckily Frank (Tocherburn) is a website designer and will sort all that side of it so if Bulgarians google in Tzoliakia............. and i can touch type Bulgarian now so once the translations (NOT from PC) are done i can make a bi lingual site (primarily Bulgarian). Any Bulgarians out there want to help me get started, i will take any free advice as i have a feeling that i'll be spending a lot getting this all set up.
Will need a logo too so if anyone is bored..........I have the Silly Yak trade mark registered in the UK because Silly Yak sounds like Coeliac but out here!! Are there any Bulgarian words that sound like tzoliakia? that will get a visual message across?
I guess a BG flag with a grain of wheat on it and a red slash through it may work like the CUK logo in the UK. this Finnish Society logo is the same logo as the UK one so i guess something similar will 'connect' the BG coeliacs to Europe.
If you've got any more ideas of getting the word out there let me know. Thanks again for the input.
Incidentally, in the UK only one in 5 of us is diagnosed, so it's worth keeping an eye on yourself and family members. It IS a killer condition, NOT a food fad.[/img]
Thanks Sillyak for all the info on symptoms. Had gut problems for all my life and only found relief when off wheat. Doctor sceptical but agreed I should try leaving wheat out of my diet. Then 3 weeks later he did the test and of course it was negative. No further action!
Wish you every success with your venture.
Posted: Fri Aug 31, 2007 2:03 pm Post subject: Standing on street corners in Bourgas plyin' me wares.
Trud and 24 Chasa are on the list of things to do next now i've found the most marvellous translator (cough) and a lawyer who is setting it all up over a 3 month payment plan for me. What i need to do now is GET THE WORD OUT using the newspapers but also good ole footwork.
I'd very much like to get 'out there' into the streets (pref Alexandrovska in Bourgas for a first time) with leaflets and photos etc but wonder how i'd stand legally. I'd not be asking or receiving donations as i'm not 'official' yet so i wouldn't be begging. Just handing out free information.
Anyone done anything like this? Can you get arrested? Did you need to apply for any kind of permissions first and from what authority?
Morgan, get back on the gluten and get diagnosed for good and always, and have the rest of the family tested BEFORE a gluten free diet is started best of luck.
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