Updated NICE Guidelines for Coeliacs in the UK

Posted in celiac, coeliac, Coeliac Disease, NHS, NICE guidelines by buzzanniebee

I follow a couple of Facebook groups which are there to support coeliacs in the UK through their gluten free journey. There is a diverse spread of people of all descriptions on there, including those who are still ‘at sea’ with what they can and cannot eat after a diagnosis of Coeliac Disease (CD). This can lead to debate, confusion and unhelpful (but sometimes humorous) posts; it can also unfortunately descend into sarcasm and downright vitriol. The vast majority of the time though, there is a great deal of helpful information. Hooray for camaraderie amongst coeliacs !

All coeliacs, when diagnosed, are on a very steep learning curve for the management of their disease, which is often diagnosed (or not – see my blog post on misdiagnoses) after a troubled descent into ill-health and dramatic weight loss. I was so ill before my diagnosis, I assumed I was dying of cancer, but then I am not known for my eternal optimism! Mind you, the unwarranted hysterectomy was a bit of a downer. Add to this the horrid business that CD can’t be diagnosed unless the patient is still eating gluten at least once a day for 6 weeks before tests can be accurately carried out, and you have a tranche of very upset, ill and often confused people on your hands.

Quite a few of the FB posts on these sites are about how coeliacs are being dealt with by the NHS, whether it is the GP or consultants. So it is interesting to note that NICE (the National Institute for Health and Care Excellence) have just brought out some updated guidance for health professionals. If you are struggling with getting tests done, or being pushed from pillar to post, but suspect CD, some of this could be worth knowing.

Testing should be offered to people who are presenting with any of the following:

- persistent unexplained abdominal or gastrointestinal symptoms
- faltering growth
- prolonged fatigue
- unexpected weight loss
- severe or persistent mouth ulcers
- unexplained iron, vitamin B12 or folate deficiency
- type 1 diabetes, at diagnosis
- autoimmune thyroid disease, at diagnosis
- irritable bowel syndrome (in adults)
first‑degree relatives of people with coeliac disease.

The guidelines also suggest that all CD sufferers are offered an annual review (either by the GP or a dietician with specialist knowledge of CD) where the following is assessed:

measure weight and height
review symptoms
consider the need for assessment of diet and adherence to the gluten‑free diet
consider the need for specialist dietetic and nutritional advice.

If you have a good, sympathetic and helpful GP, you hopefully won’t need to cite any of this information, but the more educated we are about what is expected of our health workers, the better. NICE guidelines are just that though: they are recommendations for best practice rather than ‘rules’.

In the BMJ’s roundup of the updated NICE guidelines, they point out that

A delayed diagnosis can lead to serious long-term complications, such as osteoporosis, infertility, and small bowel cancer

So if you are getting the runaround and think it could be CD, you could take a copy of these guidelines with you to the GP.

Life as a coeliac after diagnosis is relatively simple, though not without its frustrations and stresses.

And there is always some humour out there if you look hard enough.

Annie Bee x

9Sep2015

The Importance Of Food Packaging To Coeliacs

Posted in barcodes, celiac, coeliac, Coeliac Disease, food labelling by buzzanniebee

I am that woman you see at the supermarket who looks like she has all the time in the world, reading the backs of foodstuffs, with seemingly nothing better to do. And as I am the resident Fridge Fairy here at Bee HQ, 90% of the time it is me who does the food shopping for the family. They know me so well at my local Sainsbury’s most of the staff and I are on first name terms.

I was diagnosed with Coeliac Disease (CD) about 12 years ago, and within the last 2 years, one of the Baby Bees has developed a lactose intolerance. Add to that the usual likes and dislikes of an average family, and you have quite a specialist job on your hands (~ where is my job spec? when is my next pay rise and what about my pension?).

As a coeliac, I have to avoid gluten in my diet; gluten is a protein found in wheat, rye and barley. Some people also react to a similar protein found in oats (I do unfortunately ~ I miss you, flapjacks). So the most obvious list of things to avoid include

bread
pasta
breakfast cereals
flour
pastry
pizza bases
cakes
biscuits.

But gluten can be hidden in the most unlikely foods, such as ice-cream (where wheat is used as a thickener) and on frozen chips. My point is that reading labels (food and drink) and understanding what to look for, has been a bit of an education over the years, but I have now got it down to a fine art. I check just about every single thing that goes in the trolley, which is perhaps a bit over the top (although, maddeningly, ingredients do change every now and again on products which used to be GF) but rather that than be ill for days and risk bringing on symptoms which can include bloating, diarrhoea, nausea, constipation, tiredness, mouth ulcers, sudden or unexpected weight loss (but not in all cases), hair loss and anaemia. (Yes, CD is a laugh a minute). I feel I should add that my family are also very good at checking labelling.

Thankfully the laws governing labelling in the UK are both clear and helpful. If a product contains any of the following allergens the manufacturer must say so clearly on the label, and list them in the ingredients:

celery
cereals containing gluten – including wheat, rye, barley and oats
crustaceans – including prawns, crab and lobster
eggs
fish
lupin
milk
molluscs – including squid, mussels, cockles, whelks and snails
mustard
nuts
peanuts
sesame seeds
soya beans
sulphur dioxide or sulphites at levels above 10mg per kilogram or per litre

So imagine my delight when I very occasionally come across a food label which makes me smile. This barcode is a current favourite, found on the lactose free milk I buy:

There are some other examples, though not enough. I think the more the merrier ~ we coeliacs need as much fun and entertainment as we can get, and we don’t care where it comes from, even the supermarket aisles.

Have a look out for any eccentric barcodes or food labels and send them through.

Happy hunting

Annie Bee x

30May2015

A Coeliac Abroad

Posted in celiac, coeliac, gluten free, low gluten by buzzanniebee

It is always fascinating travelling abroad as a coeliac – sometimes surprising (New York several years ago was alarmingly nonchalant and unhelpful about gf food) and often a bit stressful too.

If travelling to a country where English is not the mother-tongue, we coeliacs have to travel with translations of some basic info on gluten which we hand to waiters, after which we pretty much have to hope for the best.

I am in Australia currently and must say that there is plenty of gf food on offer and a high level of understanding about food allergies in general.

However, I did come across an entirely new thing yesterday, which was where food on a menu in a cafe was labelled as “low gluten“. In the UK, gluten free food is where the food contains 20 parts per million (ppm) of gluten or less. Technically, very low gluten is where foods contain between 21 and 100ppm gluten.

Specialist substitute products (such as breads and flour mixes) that contain a gluten reduced ingredient (gluten-free (Codex) wheat starch) with a gluten level above 20 and up to 100ppm may be labelled as ‘very low gluten’. There aren’t any foods currently labelled ‘very low gluten’ in the UK ~ Coeliac UK

As far as coeliacs are concerned, we have to stick to no gluten, not low gluten, so I quizzed the waitress at length about what was going on. She was exceedingly happy to help and it transpired that in fact, they are referring to the possibility of cross contamination (cc) in the kitchen and not the amount of gluten in the bread (I asked to see the packaging). For some coeliacs, cc is a real worry, but, personally, I am fairly relaxed about it (too relaxed?). The Australian Coeliac Society has some very good info here http://www.coeliac.org.au/cross-contamination/ and they point out that,

…..as little as 50mg gluten (equivalent to 1/100th of a slice of standard wheat bread) can damage the small intestine of a person with coeliac disease.

Getting here on the plane was interesting. Airplane food is seriously lagging behind for coeliacs, so I got the ubiquitous couple of slices of melon followed by 2 rice cakes and jam. I ended up eating a bowl of nuts to supplement the meals. I have a feeling that often the gf airplane meal is also dairy free (and maybe kosher as well?) so it is a very, very long way from exciting. Oh well, it makes arriving in the destination that bit more exciting. Especially when your sister-in-law has made a beautiful gf orange cake. Yum.

Concerned about cc? Let me know what your experiences are.

Annie Bee x

Other posts on being a coeliac: https://anniebeebuzz.com/2015/05/03/coeliac-disease-too-many-misdiagnoses-and-superfluous-surgeries/

https://anniebeebuzz.com/2015/04/28/why-my-heart-sinks-when-i-am-handed-the-allergy-booklet/

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

3May2015

Coeliac Disease ~ Too Many Misdiagnoses And Superfluous Surgeries

Posted in celiac, coeliac, gluten, gluten free, Misdiagnosis by buzzanniebee

Not only is Coeliac Disease (CD) tricky to spell, it is also difficult to diagnose. It can hide behind many other things, irritable bowel syndrome – IBS – probably being the most common. For a correct diagnosis to be made, there is a simple blood test which shows up certain antibodies. If positive, that is subsequently followed up by a gut biopsy. Confusingly, it is possible to have a negative blood test and yet have CD; the most important thing during this diagnosis stage is you mustn’t stop eating gluten. Counterintuitive, I know, but that will be enough to skew the results.

So what are the GPs diagnosing in our doctor’s surgeries if not CD?

Anecdotal evidence, from a group of coeliacs in the UK who were asked just that and who don’t have an axe to grind (though how many of them have lodged formal complaints, I don’t know) show the list is long and colourful. Some of the following were actual diagnoses, some were suggestions which then led to further batteries of tests, and in some cases, superfluous surgeries were carried out. So, in no particular order we have, and I am quoting,

….. hepatitis, mesenteric adenitis (swollen lymph in the abdomen), IBS, growing pains, stress, pernicious anaemia, hormone imbalance, chronic fatigue syndrome, gastric reflux, tummy bugs, bi-polar disorder, anxiety, cyclothymia (a mild form of bi-polar), stomach ulcer, depression, lactose intolerance, fibromyalgia, fructose malabsorption, nerves, anorexia, indigestion, pancreatic cancer, bowel cancer, endometriosis, mental illness, prostatitis, cystic fibrosis, crohns disease, STDs and bulimia …….

Extraneous surgeries: thyroidectomy, appendectomy and hysterectomy (me). My all-time favourite, trumping even the person who was told twice he had STDs, is hypochondria. I am not sure whether to laugh or cry!

Alarmingly the list goes on – you get the picture. But do the GPs? Often not. In their defence, CD mimics a lot of other diseases, but think of the money the NHS could save by doing the simple blood test right at the very beginning,

My tale of woe is as follows: having complained of feeling tired and generally ill for a year or so, I was tested for anaemia. My iron levels were worryingly low and didn’t improve with massive doses of supplementary iron (at one stage I was taking enough iron every day to build a small bike). My periods were called into question – “are they heavy?” An impossible question to answer in my book as I have never had anybody else’s periods so what was I comparing them to? So I said I thought they could be, yes. Next thing I am under the knife having a hysterectomy, a major op by anybody’s standards. They left my ovaries which I now call “gluten” and “free”. Thankfully I had finished my family (I was in my late 30s at this stage) and I won’t lie and say I was not happy with the upside of no contraception and no periods.

Imagine my surprise when 5-6 years later, after a terrifying 6 months of appalling symptoms, misdiagnoses galore and massive weight loss, I was told I had CD and the anaemia had been caused by the malabsorption of nutrients all along. My gastroenterologist also added that, from the state of my villi (finger-like projections in the small intestine that help absorb food more efficiently in the body) I may well have had CD for decades.

Back in 2013, the British Society of Paediatric Gastroenterology, Hepatology and Nutrition (BSPGHAN) and Coeliac UK, the national charity for people with coeliac disease came up with a new approach to diagnosing CD in children.

This new recommended approach will aid more accurate diagnosis, help children get treated more quickly and should bring savings to the NHS.

At that point, Dr Hilary Cass, President of the Royal College of Paediatrics and Child Health said,

“This new guidance for healthcare professionals is valuable on two fronts. Firstly, it gives paediatricians the tools to better recognise coeliac disease in children, allowing them to diagnose more swiftly and accurately. And secondly, it reduces the need to perform unpleasant, intrusive procedures on children when attempting to diagnose the condition. It’s a much needed resource to address what is a relatively common but often misunderstood disease amongst UK children. Currently on average patients have had symptoms of coeliac disease for 13 years before they are diagnosed which, for many, can result in years of discomfort and pain as well as damage to the gut which could lead to other conditions if not diagnosed and treated.

Well, I am no expert, just a coeliac sticking to the gluten free diet I must, but clearly more needs to be done in making these diagnoses fast.

Let me know what you think. Have you too been misdiagnosed along the way?

Annie Bee x

28Apr2015

Why My Heart Sinks When I Am Handed The Allergy Booklet

Posted in allergies, celiac, Coeliac Disease, gluten by buzzanniebee

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.

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.

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.

Annie Bee x

5Apr2015

Am I Getting My Oats?

Posted in avenin, celiac, coeliac, gluten, Health, oats by buzzanniebee

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.

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.

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.

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

Annie Bee x

1Mar2015

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

Posted in celiac, coeliac, Diet, gf, gluten, gluten free, Health by buzzanniebee

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.

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:

Annie Bee x