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