Why My Heart Sinks When I Am Handed The Allergy Booklet

Hello again

I recently joined an incredibly interesting, friendly and helpful Facebook page entitled, “Coeliacs Eat Out Too …… They Also Live Everyday Lives”. If you suffer from Coeliac Disease, it is always nice to be able to share info, moan a bit and support others who have this auto-immune disease.

Recently, I have noticed a phrase which has started popping up, and not necessarily in a good way. One fellow coeliac called it “being given the folder treatment“. Here in the UK some new legislation came out a few months ago which requires all places where food is sold to provide allergen information on everything they offer. This is a good thing right? Yes, without a doubt. The problem arises when the restaurant hands you the dreaded folder which contains all the information, covering all allergies, from nuts to crustaceans and everything in between. It can run to about a hundred pages of closely-typed script. Here are some coeliac’s views on the subject:

~ I hate ‘the folder’. It’s poor customer service pretending to be good service.

~ The whole file was so confusing as ingredient listings were spread over lots of pages. The main part of the meal was listed in one section, then sauces in another, sides in another so I had to check lots of different pages for each item on the menu. I ended up choosing the first thing I found as I couldn’t be bothered to plough through the information.

~ It just annoys me. Vegetarians get a nice little green ‘v’ on the menu and are pretty well catered for, and we have to wade through this massive folder!

I have encountered the folder a couple of times – once it took me over 20 minutes in the pub to cross-reference everything in the folder against the 3 menus on offer that day (lunch, specials and pre-Christmas). I was stressed and harassed by the time I came to order, as was my fellow diner. I will not go back there again.

Allergen Booklet Confusion

Some coeliacs say that it is better to get the folder treatment than have the waiter say “what is gluten?” (if that happens, I walk out). I agree, but there has to be an easier way. What is wrong with the chef or the company marking all the menus for us?

If you are interested to know what the new rules are, have a look at this guidance from the UK’s Food Standards Agency:

https://www.food.gov.uk/sites/default/files/food-allergen-labelling-technical-guidance.pdf

The general advice being given to food businesses about allergies is this:

In the UK, it is estimated that 1-2% of adults and 5-8% of children have a food allergy. This equates to around 2 million people living in the UK with a food allergy, this figure does not include those with food intolerances. This means the actual number of affected people living with food allergy and/or food intolerance is considerably more. 12. An allergic reaction can be produced by a tiny amount of a food ingredient that a person is sensitive to (for example a teaspoon of milk powder, a fragment of peanut or just one or two sesame seeds). Symptoms of an allergic reaction can range from mild symptoms such as itching around the mouth and rashes; and can progress to more severe symptoms such as vomiting, diarrhoea, wheezing and on occasion anaphylaxis (shock). Around ten people in the UK die from allergic reactions to food every year.

There is no cure for food allergy. The only way to manage the condition is to avoid food that makes the person ill. This can be achieved by checking ingredients details on labels of prepacked foods and being provided allergen ingredients information for non-prepacked foods. Therefore, it is very important that food businesses provide clear and accurate information about allergenic ingredients in their products.

allergen poster

I have written a few other posts about Coeliac Disease which you might like:

https://anniebeebuzz.com/2015/04/05/am-i-getting-my-oats/

https://anniebeebuzz.com/2015/03/01/hello-my-name-is-annie-and-i-am-a-coeliac-or-is-that-celeriac/

Let me know if you have been given the folder treatment – annoying or essential? Let me know.

allergy humour

Annie Bee x

Annie Bee signature

Am I Getting My Oats?

Having Coeliac Disease is not a big issue as long as you do just one simple thing: never eat gluten. Undiagnosed Coeliac Disease definitely does have negative health impacts though and if you have reasons to suspect an intolerance you should certainly get it checked by a doctor (there is a simple blood test as the first step towards diagnosis). Here is some very basic information on the disease, taken from Coeliac UK, the oldest and largest Coeliac Disease charity in the world  (https://www.coeliac.org.uk/home/)

Associated conditions and complications

Dermatitis herpetiformis (DH) is a skin condition that is associated with coeliac disease. It affects approximately 1 in 3,300 people. Like coeliac disease, it is treated with a gluten-free diet.

Coeliac disease is an autoimmune disease that can occur in those people who have the genes that predispose them to the condition.For this reason, coeliac disease is more common among people with other autoimmune disorders, such as Type 1 diabetes and autoimmune thyroid disease.

Undiagnosed and untreated coeliac disease may lead to developing osteoporosis, which is where the bones become thin and brittle. This is because you may not have been absorbing calcium properly for some time.

Lactose intolerance can be associated with coeliac disease as the disease damages the part of the gut where lactase, the enzyme that breaks down lactose, is produced. Symptoms of lactose intolerance are similar to that of coeliac disease.

Lymphoma and small bowel cancer is a serious complication of coeliac disease. However, once someone with coeliac disease has been following the gluten-free diet for three to five years, their risk of developing these specific types of cancers is no greater than that of the general population.

oats

There is also the question of whether coeliacs can eat gluten-free (gf) oats, and this week, I have been forced to do some further research into the subject as I have been very ill. This is also from Coeliac UK:

Oats contain avenin, which is a protein similar to gluten. However, research has shown that most people with coeliac disease can safely eat avenin.

Problems can occur if oats are produced in the same place as wheat, barley and rye, as the oats can become contaminated with these other grains. Only oats which are uncontaminated can be eaten by people with coeliac disease.

There are a very small number of people with coeliac disease who may still be sensitive to gluten-free, uncontaminated oat products.

When I was first diagnosed with Coeliac Disease, I had a list in my mind of the things I would miss the most: croissants, pizzas, pasta, but what trumped all that was flapjack.

flapjack

Oats are such a good food. Porridge such a wonderful breakfast. When gf oats were brought onto the market several years I ago, I was tremendously happy. I definitely remember reading that, even if you tried them out and found you could tolerate them, it was sensible to only eat them every now and again. Sadly, my on-off switch in life sometimes goes AWOL and for the last couple of months, I have been eating gf oats as the basis of my breakfast pretty much every day. About 10 days I ago I started to feel poorly but it took me ages to figure out what was causing the flu-like symptoms/nausea/mental fogginess and worse. So for the time-being, I am off them while I recover. Quite a wake-up call.

Oats

Happily there are plenty of gluten-free Easter eggs to help me regain my mojo.

Annie Bee x

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Hello. My Name Is Annie And I Am A Coeliac (or is that Celeriac?)

Several years ago I was chatting to the manager in my local large supermarket about the very emotional issue (if you are a coeliac) of gluten free bread, and he said, “Oh yes, I know it must be terribly hard for you celeriacs”. I didn’t have the heart to correct him as he looked so earnest, but have to say that as the years have gone by, the understanding of coeliac disease (hard enough to spell, let alone live with) and the offending protein, gluten, has improved hugely. Gluten free (gf) foods are now readily available here in the UK and many restaurants have menus which are fully labelled, taking the stress out of eating out. I was out for lunch recently here in Hertfordshire though and the waitress gleefully told me she would bring me the Allergy Information Pack which turned out to be a 100 paged, closely- typed scientific report which I then had to cross-reference against the menu. Jolly helpful you might think, but by the time I had found things I liked the sound of, checked whether the tick meant it was gf or contained gluten, and finally checked if it was on that day’s lunch menu, I had lost my appetite and was stressed by the whole palaver, as was Mr Bee. All coeliacs will know this problem well. Worse though is the waiter who says, “Yes I am sure that will be fine” but comes back 10 minutes later with the type of comment which makes a coeliac shudder: “the risotto contains rice, so you can’t have that”. If that is the level of their knowledge, cast aside your napkin and RUN.

gf ee card

Some very lovely people I know eat a gluten free and/or wheat free diet for health reasons, even though they may not technically have this auto-immune disease (or at least have not been diagnosed). I vividly remember one waitress in a restaurant literally rolling her eyes when I told her I couldn’t have gluten (another picky eater) so I do sometimes feel like wearing a little badge which says ” REAL Coeliac” and I always, without fail now refer to it as “Coeliac Disease” when talking to people in a restaurant, cafe or shop. There does seem to be good evidence now of what is called ‘Non-Coeliac Gluten Sensitivity’ (NCGS) so we RCs (Real Coeliacs) need to embrace our brothers and sisters. The more the merrier.

There are so many lovely blogs, websites and books for coeliacs now. When you are at home, you can eat like a king. Travelling abroad has its challenges but you can print off information about the disease in loads of languages these days which at least cuts down on the chances of mistakes being made.

It is no picnic being coeliac, but there are MUCH worse problems to have.

If you want a good, in-depth article on these matters, try this:  http://www.theguardian.com/lifeandstyle/2015/feb/25/gluten-free-diet-life-saving-fad

Thanks for reading. There are a few more pics here: 

green bee for signature copy

Annie Bee x