Updated NICE Guidelines for Coeliacs in the UK

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. coeliac humour

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

Annie Bee x

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Sugar? Carbs? Inactivity? What Is Causing The Obesity Crisis?

Everywhere you look these days, there is a vast amount of information on obesity and weight loss. Most of it makes very scary reading.

A few days ago I was listening to the UK’s leading expert on obesity, Susan Jebb OBE, on Radio 4’s The Life Scientific. She is a nutrition scientist, and the Professor of Diet and Population Health at the Nuffield Department of Primary Care Health Sciences at the University of Oxford; she is also the UK Government’s advisor on obesity in the United Kingdom. One of the headline things I learnt from listening to the interview, is that her many years of research on human metabolism has proved without a doubt that you “cannot get fat without eating too much”. Metabolism is a bit of a red herring in her view and energy intake is KEY: she said that ultimately, obesity is about food intake. Other factors (physical exercise, metabolism etc) play a relatively small role. She did make the very encouraging point though, that a fairly small weight loss  (she gave an example of losing 4kgs which is less than a stone) significantly lowers the risk of diabetes in those predisposed to the disease.

Prof Susan Jebb

Professor Susan Jebb

Obesity and being overweight affects all the organs in the body detrimentally (as well as joints) and is undoubtedly the biggest health threat to the nation.  Another frightening statistic I heard this week was that £1 in every £5 spent by the NHS is as a result of people’s poor lifestyle choices – over-eating, smoking, too much alcohol, drug-taking and inactivity.

One of Prof Jebb’s pieces of research which particularly interests me (in relation to The Side Plate Diet) is entitled, Is plate clearing a risk factor for obesity? A cross-sectional study of self-reported data in US adults. The conclusion was that

….. the tendency to clear one’s plate when eating is associated with increased body weight and may constitute a risk factor for weight gain.

You can read it in full here: http://www.phc.ox.ac.uk/publications/502174

I was on a bit of a research roll at this point, so I also watched the US documentary film, “Fed Up”, about the US food industry. One of the many ideas the film posited was the view that you cannot exercise your way out of being overweight. Physical exercise of course has benefits to your overall health but weight is mainly about the types of food we are eating.The film was jam-packed full of deeply worrying statistics (the growth of Type 2 Diabetes in pre-teens in the US being one) but the main thrust was the very great danger of eating too much sugar, and to some extent, sugar substitutes which have the effect of making you crave more sugary foods. (Note to self: Diet Coke may not be as harmless as it looks).

Sugar , according to the film, is the new tobacco.

Fed Up movie

Today, the following research has made the news, via the British Journal of Sports Medicine

Excess sugar and carbs, not physical inactivity, are behind the surge in obesity.

It’s time to bust the myth that anyone—and that includes athletes—can outrun a bad diet.

Regular exercise is key to staving off serious disease, such as diabetes, heart disease, and dementia, write the authors, but our calorie laden diets now generate more ill-health than physical inactivity, alcohol, and smoking combined. Read more here:


If you still have a sense of humour after reading that round-up, have a look at Homer Simpson main-lining sugar:  https://www.youtube.com/watch?v=UzhIagCwUUc

Homer Simpson

Happy eating!

Annie Bee x

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