Join in for Coeliac Awareness!

Join in for Coeliac Awareness!

Calling all Guerillas!

Join in our Coeliac Awareness UK campaign. Tweet or Post on your Facebook status #coeliacis plus what it means to you. We've seen some great responses already! Remember to hashtag #coeliac #celiac too ; )

?#coeliacis asking what gluten free options there are everywhere you go - even if you think the answer is 'none' #celiac #gf

#coeliacis honing yr persuasion skills on sceptical friends and family. Showing them the #gf way. #celiac

@glutenfreeuae: #coeliacis genetic, family members should also be tested #celiac

#coeliacis missing Guinness but discovering great Gluten Free beers i.e. @Daas_Beer @EstrellaDammEng (Daura) #celiac #gf

#coeliacis asking what gluten free options there are everywhere you go - even if you think the answer is 'none' #celiac #gf

@JonHotchkiss: #CoeliacAwarenessWeek @GFGuerrillas #coeliacis being able to train and race properly without fatigue taking over & forcing me to stop

@GFGuerrillas: #coeliacis learning to smile when the waitor says 'what you want Free Food!?'. Then you explain what gluten free is - again. #celiac

Don't forget you can also add some Coeliac facts onto your Facebook update and spread the word amongst non-coeliacs & relatives.

Help one of the estimated 90% of the population with undiagnosed Coeliac / Celiac Disease find their way back to good health!

Here's some ideas:

Did you know...

Coeliac disease is not an allergy or an intolerance but a heriditory multi-system auto-immune disease (aka the body attacks itself and various organs whilst trying to attack gluten which it views as poison)

1 in 100 people in the UK are diagnosed with Coeliac Disease

Coeliac Disease is more common than MS yet most people haven't heard of it or know what it is! e.g. 1 in 100 people in the UK are diagnosed with Coeliac Disease yet 1 in 1000 people in the UK are diagnosed with MS

The NHS estimates that ' ..as many as 90% of cases of Coeliac Disease are either undiagnosed or misdiagnosed as other digestive conditions, such as irritable bowel syndrome (IBS)'

Yet 90% of Coeliacs are undiagnosed and putting themselves at risk of severe ill health not to mention straining the the healthcare budget as the symptoms not the cause of their ailments is being treated

People with coeliac disease can't eat the protein called gluten found in wheat, rye, barley or oats as their body views it as a posion and attacks itself causing a variety of symptoms which can eventually cause stomach cancer

Coeliac Disease can occur at any age !

Gluten is found in any food that contains the cereals wheat, rye, barley & oats including these foods:

- pasta- cakes - breakfast cereals - most type of bread (yes that includes Soda, Rye, spelt bread!)- most processed foods e.g. ready meals, soy sauce, gravy, crisps, sauces, dips, cloudy drinks, colas, liquorice, sweets etc etc !

- beer, ale, larger also contains gluten

Coeliac disease costs the NHS around £11 million a year, but it is estimated that these costs could be drastically improved with greater diagnosis rates

It takes on average 11yrs for someone with Coeliac disease to be diagnosed as the symptoms are often confused with other illnesses or labelled as 'IBS

The NHS estimates that ' ..as many as 90% of cases of Coeliac Disease are either undiagnosed or misdiagnosed as other digestive conditions, such as irritable bowel syndrome (IBS)'

Yet diagnosis of Coeliac Disease is simple a blood test (tTG, the major target autoantigen of the endomysial antibody EMA) and then a follow up endoscopy

In 2008/9 Coeliac UK signed up around 900 new members a month, now in 2011 on average they get 1200 new members a month !

Coeliac disease is genetic so close family members of anyone diagnosed with the disease should be tested for it

Undiagnosed Coeliac Disease can cause stomach & bowel cancer, liver disease, pancreatic cancer, infertility, osteoperosis, depression and trigger other auto-immune diseases ?

That depending on age when diagnosised and length of time with Coeliac Diseasse it can take between 1 year to 5 years+ for the stomach to heal whilst on a strict gluten free diet so that it can begin to process vitamins and minerals from food effectively !

It is estimated that people with coeliac disease are twice as likely to develop bowel cancer compared with the general population (only 1 in every 200 people with coeliac disease will develop bowel cancer in the first 10 years after diagnosis, source NHS Choices)

Although coeliac disease damage originates in the small intestine and results in primary gastrointestinal symptoms, complications can affect the skin, central nervous system, cardiovascular sytem, reproductive system, and musculoskeletal system, which can make it hard to diagnose as it mimics other auto-immune condition symptom

Research strongly links these health conditions with Coeliac Disease...- recurrent miscarriages- type-1 diabetes- thyroid disease- rheumatoid arthritis- lupus- sjorgen's syndrome- addison's disease- epilepsy- alopecia (hair loss)- asthma- hayfever- osteoporosis- osteopenia- osteomalacia...so if you know someone with any of these which has not got better despite years of visitors to doctors why not get them to ask their GP for a Coeliac blood test?

The symptoms of coeliac disease can range from very mild to severe

Common symptoms of Coeliac Disease are: - extreme tiredness- foggy headedness- irritability- failure to grow at the expected rate (often in children)- sickness- diarrhoea- constipation- stomach cramps- weight loss- weight gain- anaemia- malnutrition- infertility- bloating- acid reflux- teeth problems- depressionand other symptoms are: - nausea- cramps- dizzyness- mouth ulcers- psiorisis - eczema- poor tooth enamel- headaches- bone ache- muscle spasms- menstrual problems- sleep disturbances- restless legs- recurrent colds (due to damaged immune system)- hair loss- recurrent urinary tract infections (due to damaged immune system)- recurrent thrush infections (due to damaged immune system)

Plus neurologic conditions:- ataxia- peripheral neuropathy- depression- schizophrenia- epilepsy- and intracranial- calcifications(see celiaccmecentral.com/getsta... copyright Celiac Central)

4 Replies

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  • Hi Fiona, haven't you been busy and worked hard so good for you.

    Firstly I think a punchy intro which would make others sit up and think like:

    ''Wheat is toxic 2me''

    Look at the vegetarians logo: meat is murder and that's very effective.

    The trouble with coeliac and gluten free is they are not punchy or inspire immediate attention.

    The other thing that I think would help other coeliac to spread the word and raise awareness is to have standard letters to restaurants cafe's supermarkets.

    And food manufacturers who add low levels of gluten to naturally gf foods or can't be bothered to eliminate cross contamination.

    To deal with food companies who can't be bothered to eliminate cross contamination I think we should get friends and families of coeliac to send out a standard letter saying that if their company can not be bothered to cater for coeliac then they can't be bothered to buy their products either, a bit of pro active support. This I think would really help raise awareness for coeliac by getting non coeliac involved easily and effectively. Or even have an online petition headed ''friends of coeliac''

    That's my 2p's worth.

  • Wow - loads of straight forward info to use on my fb account. Thank you for doing all this work so that it's quicker for us to post up messages.

  • I promote coeliac disease each time I eat out/ holiday, I do not support Coeliac UK or the opinions of the EFSA or FSA. My Coeliac Disease does not fit the criteria that is preached namely Remission for 45 years.

    I do not support the amount of coeliacs diagnosed or not in the UK and during my 65 years of life have met very few.

    I live as near normal life as I can with Coeliac Disease, Formaldehyde Allergy and now Atril Fibrilation.

    The gluten free diet has only limited types available to me, ie pasta, crackers & some biscuits.

  • I'm not sure where you're going with this. I'm not on facebook or twitter so I can't help you there - so what are you asking of me?

    I find that whenever I tell people I'm 'gluten intolerant' they frequently know of someone else who is a coeliac, but I seldom come across anyone who has not heard of our problem. The big laugh I get is that they all expect me to be thin (and I'm not!).

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