Friday, 16 May 2014

Coeliac Awareness Week 2014 - See Lack Of Awareness Week?

So it's coming to the end of the week and not just any week, Coeliac Awareness Week 12th - 19th May 2014. I know how many causes and charities get their day or week in the calendar year, but Coeliac Awareness Week is the one I give my voice to. Why? Because so many people are silent sufferers of this disease and so many remain undiagnosed.

A little background: What is coeliac disease?

Firstly, coeliac disease is NOT a food allergy. Coeliac disease is an AUTOIMMUNE DISEASE = the autoimmune system attacks the bodies own tissues. When someone who has coeliac disease consumes gluten (which is a combination of two proteins glutenin and gliadin found in wheat, barley and rye), damage and inflammation occurs in the small intestine and prevents absorption of necessary nutrients from food. It is permanent and the only 'cure' is to be on a gluten free diet.

Gluten Dude published an Infographic on his blog that he created, with a number of symptoms that are linked to Coeliac Disease. A link to the full resolution of the infographic is here:

Copyright Gluten Dude

Statistics tell us that there are 1 in 100 people who suffer from this disease. I speculate in Ireland, that there are probably even more due to the genetic predisposition of coeliac disease. Ireland has one of the highest coeliac populations per capita, in the world. It is likely that if you have a family member suffering from coeliac disease you have a higher risk of being diagnosed with it. (Personal note: even if you are not suffering any symptoms associated with coeliac disease, I really think it is worth getting tested if you have a close family member/family history of coeliac disease. Coeliac disease can be silent and you can suffer with it for years without knowing, unwittingly doing tremendous damage to your body.)

So back to Coeliac Awareness Week. See lack of awareness week? Why am I asking this question? I am asking this because, although this week has been declared Coeliac Awareness Week in Ireland - there is very little awareness of what coeliac disease actually is. I am aware of it, because I am already involved in the online gluten free and coeliac communities and so through social media knew when it was happening.

So this begs the question, if you are not already a part of the gluten free and coeliac online communities, how do you find out about coeliac disease and why there is a week dedicated to raising awareness about it? Is coeliac awareness week only for coeliacs?

I conducted a small, simple straw poll, with the help of my friends on social media (I did not use my GFP facebook page as I wanted to ask people who weren't necessarily connected to the online gluten free community) and I also personally asked random strangers and acquaintances alike as well. I asked two simple questions: 'Do you know what coeliac disease is?' and 'Did you know that it is Coeliac Awareness Week this week?' I asked for a simple yes/no answer. The results:

Do you know what coeliac disease is?

28 respondents out of a total 73, said they knew what coeliac disease was. Those that I spoke to directly, or further explained their yes answer said they thought it was either an allergy or an intolerance to bread or gluten. There were 7 respondents who commented said they knew exactly what it was as they had a direct relative or friend diagnosed with it. There were 17 respondents who just answered yes.

Did you know that it is Coeliac Awareness Week this week?

50 respondents out of a total of 73, said they did not know it was Coeliac Awareness Week. Out of those that I was able to speak to directly, 2 knew it was Coeliac Awareness Week because they heard a mention on day time radio. 2 respondents who had close family members who were coeliacs did not know it was awareness week.The remaining responses were just a yes or no answer.

Further comments I received that are worth mentioning:

"It can be confused with IBS, can't it?"

"There was a church that arranged a coeliac first communion."

"It's an allergy/intolerance to bread."

"I have never even heard of coeliac disease before!"

"It means you can't eat wheat."

"It's an allergy to gluten, but I'm not too sure what gluten is."

It was a broad range of generations and people who were asked - professionals, parents, peers. I think the overwhelming feeling I get from the feedback is that there really is no true awareness of what Coeliac Disease is. 

I often encounter a dismissive attitude to coeliac disease. An 'I don't have it, I don't know what it is, I don't care', demeanor. I think this is quite a dangerous mindset. It is unfortunate at how misunderstood this disease is. I recently asked on my twitter and facebook page: Do you think there is a better understanding by the general public of what Coeliac disease is?

That sparked some interesting conversation. The whole point of asking the question was to try and get some honest answers from the gluten free community - and honest answers I did get. There seems to be an overall divide of flat-out 'no' to 'there is an improvement in awareness, but there is still a long road ahead to achieve true awareness.' The feedback that I received that really stuck with me was that someone wrote, 'Coeliacs give Coeliacs a bad name'. This person's experience was that even fellow coeliacs did not truly understand what it means to be diagnosed with this disease. I personally think that the medical profession is at fault here. If someone is diagnosed with a food allergy, that person is made very aware that they need to avoid those foods. If someone is diagnosed with coeliac disease and they are not clear about what their diet needs to be and what the consequences of veering from that diet are, there's a serious communication break down happening between the doctor and patient. There should be a positive knock-on effect from the medical community, not a negative one.

People were fed-up of coeliac disease being misdiagnosed or confused with IBS. There was a sense that there was no real support from the medical community. Feeling isolated was mentioned. No whole holistic approach, not just digestive health. The medical world does not look beyond the 'surface' symptoms.

It would be great if the medical profession took up the mantle of Coeliac Awareness Week and promoted understanding and education of what it is all about. That there was literature, posters and pamphlets in GP offices, hospitals, pharmacies and medical institutions explaining and promoting awareness of what coeliac disease is. I'd love to see the HSE or some other relevant semi-state body step-up to the plate and get the ball rolling. How can a population who suffers from this disease be so unsupported and ignored in the medical community - when this is the first step for most - talking to their doctor. It is shameful neglect and it is the misdiagnosed and silent sufferers who are hurt the most.

The usual complaints about eating out surfaced - cross-contamination, misunderstanding, ignorance, poor training and general confusion seem to rule the roost. It was noted that there are some really, proper, decent restaurants, hotels, etc., that do it right, but they are in the minority. 

The hospitality and catering industries need to embrace and understand coeliac disease. Flippant articles that I've seen published encouraging gluten free as a trend in restaurants, etc., explaining that a simple gluten free replacement is enough to provide for the gluten free community, is ridiculous. They need to have a clear understanding and proper training in how and what eating out as a person with coeliac disease really means. To be vigilant about cross-contamination. The Food Safety Authority of Ireland tweeted me this information, 'There's no national body which looks after food safety training. We provide advice on what to look for in a trainer.' I would love to see proper training and guidelines in the catering industry being actively pursued and continuously followed-up with visits from trainers who understand coeliac disease. There is clearly a gap and this industry should look into setting up a resource for themselves so that they can receive the training and education that is so desperately needed.

I would love to see some seriously hard core, continuous national media attention being given to Coeliac Awareness Week. Tons of radio interviews, roadside billboards, tv spots, newspaper articles, magazine features, full page informative advertisements explaining what coeliac disease is. I'm so tired of 'token' efforts from the media - a single article in a national paper or a small feature inside a supplement of a minor publication is not good enough. The message is clearly not getting out there. The media need to embrace this better, coeliac disease may not be a sexy headline, but that doesn't mean it isn't important.

I haven't seen any promotion of Coeliac Awareness Week in any of the big supermarkets or health food stores in my area. That's not to say it isn't happening elsewhere - I'm saying it should be happening everywhere. Coeliac UK are doing a really great idea for awareness week promoting a gluten free guarantee - essentially ensuring a core basket of gluten free foods to be made available in the supermarkets. Read about it here - a super idea and something I think could really work here.

The point of this post is not to be negative. I'm just highlighting what I see, feel and hear around me. There has been some great promotion of gluten free foods in shops and some lovely giveaways during the week, not to mention some great blogs! Did you read Coeliac Page's diagnosis story? Find it here: Gluten Free Cailin recorded her diagnosis story on her blog: There was an article in The Irish Times:  An opinion piece in I would like to see more, more, more - greedy, I know but it would be great!

I wrote this on my facebook page already, but I think it bears worth repeating, I would like to think there is a time when the small, vulnerable percentage of the community does not feel like it has to resign itself to 'every coeliac for themselves', that there will be tolerance, empathy and patience for those suffering. That there is education and help, emotionally and physically, to hand. Ideal - maybe, but we should always aim high.

There needs to be a bright light shone on the ignorance towards this disease. Everything comes down to this: Education, Education, Education!

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