GP | Annie Bee ~The Buzz Of A Like-Minded Woman

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

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