Does your doctor know the facts about coeliac disease?

When I was small, I thought adults knew everything, particularly doctors. There was no question of misdiagnosis or a wrong prescription. Doctors were super clever and to be hugely respected.

Sadly, when I got coeliac disease, I went through 3 years of misdiagnoses. It got to the point where I wondered if it was worth going to the doctor. Wouldn't it be easier to try and sort things out myself?

But I kept going back and eventually got my diagnosis. I'd never heard of coeliac disease and was eternally grateful to the GP who'd worked it out.

Things Are Different Now

That was back in the nineties. Practically no-one seemed to know what gluten was and there didn't seem to be much about it in the media. Fast-forward twenty years and there seems to be an overwhelming amount of information by comparison.

Would I Be Diagnosed More Quickly Today?

According to Coeliac UK, the average diagnosis takes 13 years, which isn't particularly reassuring, but that figure may include people who don't bother going to the doctor much. I, on the other hand, am the sort of person who bulldozes their way through reception staff, nurses, doctors and specialists until I get the answer I need, which is possibly why I was diagnosed in a comparatively quick 3 years.

My Fears For The Average Undiagnosed Coeliac

Not everyone keeps going back until they have an answer. I wonder how many doctors are still missing the coeliac diagnosis so crucial to the wellbeing of people who have the disease.

Don't get me wrong: I'm not blaming every doctor out there. I'm aware the symptoms of coeliac disease mimic many other illnesses and therefore it's not always easy to diagnose.

Why Are GPs Giving Out False Information?

That said, in the past week I've been shocked to hear stories of people who've been given the most appalling information by their GPs, and wondered what sort of training these doctors have been given.

Lie Number 1

The first case involved a woman who had coeliac disease in her family. She went to the doctor to say she'd never had any symptoms until now. She was getting stomach aches and bloating and wondered if she should be tested. The doctor's reply? He told her people only got coeliac disease at birth and she wouldn't have developed it so late in life.

I hardly know where to begin with this ignorant and false statement. Coeliac UK makes it clear you can get coeliac disease at any age (read more here). Her doctor should have given her a test.

Lie Number 2

The second case involved a woman in a lot of pain who thought she might have coeliac disease but tested negative in the initial blood test. When she went back to her doctor, she was told the doctor couldn't help her any more and to eliminate something else from her diet to see if that helped.

Seriously?! This patient is not a medically trained person or a dietitian. It's clear there's a problem with this patient or she wouldn't be in so much pain.

There are three things wrong with the doctor's response:

1. It's dismissive - as though the doctor has better things to do than help people get better.

2. It ignores the fact the blood test isn't 100% accurate - it shouldn't solely be relied upon for a correct diagnosis.

3. It invites her patient to do more harm than good. It is not sensible to eliminate any food from your diet without the guidance of a medically trained person or it can lead to malnutrition.

What You Can Do If You Get A Bad GP Response

As with any medical issue, if you're not getting better and you believe you haven't got the right advice, you're entitled to a second opinion. Make sure you have a diary of your food & drink intake (including every single thing you've eaten) as well as a list of symptoms that occurred and at what times. Having this information may help your GP, especially if it proves your condition is diet-related.

A Final Note To The Good GPs

I'm not under the impression all doctors are ignorant or dismissive. I am well aware there are some exceptionally talented people in the medical profession. I am also aware they know a lot more than the average person about the likely condition their patients have. They also may correctly diagnose you don't have coeliac disease (even if you think you do) because there's a different condition you have which hasn't yet been discovered. To these doctors, I am extremely grateful. To those who are reflecting badly on their profession, perhaps they ought to reconsider being GPs. After all, there are other ways to use your medical knowledge, especially if you're not a people-person.

Have you had a bad experience with a GP?