Suffering in Silence?

I’m being a little bit cheaty today by borrowing a post from my other blog again, but I’m only doing it because I think this is such an important issue and I want to reach as many people as possible.  So there.

Coeliac Disease affects as many as 1% of the UK population (rising to 10% where a close relative also has the illness), but only 10-15% of these are diagnosed. Getting a dignosis is notoriously difficult, especially since the classic symptoms can point to other illnesses, such as IBS.  Another reason people have difficulty in getting a diagnosis is that the symptoms can be so varied, and there is no particular set of symptoms one must have.  “Classic” symptoms can include weight loss, but are gof number of coeliacs, including myself, may present with none of these symptoms.

There was a great article in the Daily Mail today (I know!) about the trouble this can cause, since many doctors simply don’t know what to look for.  They know, of course, the classic symptoms but far too few are aware of the myriad other symptoms connected to Coeliacs, and patients can be suffering from ill health for years, decades even, before the cause is pinned down.  Research has shown that it takes, on average, a staggering thirteen years to be diagnosed.

The article rang so many bells for me. I was formally diagnosed with Coeliac Disease in 2004, although it was first put forward as a possibility in 2003.  The GP practice I went to at the time would not test me for Coeliac Disease, but a locum suggested I go on a gluten free diet for two weeks, to see if there was a difference to my symptoms, reasoning that if there was, they would have no grounds to continue refusing.  Of course, doing things in this order brought its own problems, and it was several months and a change of GP later that  I was finally diagnosed.

However, I first began feeling unwell in 1994, when I was at university.  I had muscle and joint pain, fatigue, weakness, difficulty walking and was diagnosed with Fibromyalgia Syndrome and prescribed antidepressants for their side effects.  In fact, they just lowered my blood pressure and caused blackouts.  This diagnosis was later changed to ME/Chronic Fatigue.  I’ve also had diagnoses of vertigo and migraines, as well as depression.  In the intervening years between my first symptoms, and my diagnosis with Coeliac Disease, I tried acupuncture and homeopathy, and all kinds of drugs prescribed by my GPs to combat the symptoms.

It actually wasn’t until I read the article from the Daily Mail online this morning, after a tip-off, that I put all the symptoms together and realised that my Coeliac symptoms went back far further than I thought – nine years further!

If you’d like to read the article for yourself, you’ll find it here.

Coeliac Disease

Diagnosis of Coeliac Disease includes a blood test and a biopsy, but there is now a self-testing kit available.  It tests your blood in the same way as a clinical test, and is as accurate, as long as the guidelines are followed.  It’s important that you are eating a normal diet (ie that you have not reduced or completely removed gluten from your diet) when the test is done.  Coeliac UK recommend that if your result is positive, you should visit your GP for follow up tests and advice (and to make sure any related illnesses such as anaemia and osteoporosis can be treated), and if your test is negative but you continue to show symptoms, you should get advice from your GP anyway.  However, given the difficulties in getting diagnosed, a self-test might be able to speed up the process.

If you’ve got unexplained symptoms, please visit the Coeliac UK website and explore the possibility.  Coeliac Disease can be so serious if left untreated, but in most cases, most damage can be reversed by simply completely eliminating gluten from the diet.  There is no cure, and no medical treatment, so the dietary alterations are essential.  However, removing gluten from the diet is not the difficult task it used to be; suitbale alternatives to to staple foods are much easier to obtain than they used to be and new products are released all the time.  They’re also much tastier than they used to be.



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