THE BLOG

Ending Up in Hospital With Avoidable Malnutrition Shouldn't Be the First Step Towards Diagnosis

06/05/2016 16:41 | Updated 08 May 2016

When you work for a national health charity for a long time, you talk to a lot of people who have endured significant pain and discomfort. When it's a health charity working for people with coeliac disease, you know that most of that pain could have been avoided.

Before I go on, I just need to point out that coeliac disease isn't an allergy or intolerance to wheat. It's a lifelong autoimmune disease, caused by the body reacting to even a tiny crumb of gluten, found in wheat, barley or rye. The symptoms include, but aren't limited to; unexplained anaemia, diarrhoea, stomach pains and lethargy.

As ingredient label connoisseurs out there will know, those three grains are popular ones, and reading food labels becomes a newly acquired skill.

Managing this unrelenting condition means sticking to a strict gluten-free diet for life. Normal bread, pasta, cakes, pizza, beer and more are off the menu for good, to be replaced by specially made alternatives and naturally gluten-free foods. But, for the vast majority of people with coeliac disease it's an adjustment they're willing to make, and a small price to pay to get their lives back.

The biggest problem, though, is that half a million people in the UK are living with coeliac disease and simply don't know it.

That's the equivalent of the entire population of Edinburgh living with persistent stomach issues. Or five Wembley stadiums full of people who have unexplained anaemia, mouth ulcers, and hair loss.

The possible symptoms don't stop there. Coeliac disease can cause depression, nerve problems and repeated miscarriages. If left untreated it can lead to osteoporosis or even small bowel cancer. And yet, a section of the UK's population that would fill Luxembourg are not only living with these symptoms, but are also unable to explain them.

We need to bring this situation to its end. A simple misdiagnosis or lack of understanding should no longer cost people their health, happiness, and in some cases, their futures.

For two straight years, Coeliac UK have been running the 'Is it coeliac disease?' campaign across the country with one clear aim. If you have any of the associated symptoms, get tested. If you're not sure, complete the online assessment to see if you should be: www.isitcoeliacdisease.org.uk .

If you don't, or you're already diagnosed, spread the diagnosis message as far and wide as you possibly can.

Highlighting coeliac disease to somebody with symptoms may lead to a time when they can enjoy food without immediately associating it with pain. It may lead to a point where someone has the energy to do the things they want to do with their day. It may even lead to the baby that they thought they could never have.

From 9-15 of May please join me in supporting Coeliac UK's awareness, sharing symptoms and shouting about testing.

As is so often the case with misunderstood health conditions, the only real long term solution is shared understanding.

Sarah Sleet
Chief Executive Coeliac UK
www.coeliac.org.uk

Comments

CONVERSATIONS