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It’s Coeliac UK Awareness Week this week, and while for many companies it’s become a chance to market their gluten free products, it’s important not to lose sight of the real reason this week exists.

For those that don’t know, coeliac disease is an autoimmune condition, and the only cure is a strict, life-long gluten free diet.

I was diagnosed when I was around 12-years-old, and I’m making it my mission in life to prove that being gluten free doesn’t have to suck the fun out of life!

Nowadays, more and more people are aware of coeliac disease (or have at least heard of gluten)

But there are many misconceptions that surround this serious condition – some of which I did not myself realise until recently.

So I thought I’d share a few of them with you, with a little help from Coeliac UK. I’d love to know if there were any of these you didn’t know too!

the gluten free blogger sarah howells coeliac disease

Coeliac disease not an allergy or an intolerance

Hands up all those with coeliac disease who have to resist hitting something when someone says ‘oh you’re allergic to gluten?’

It is not a gluten allergy, and it’s not a gluten intolerance.

It’s a serious autoimmune condition caused by a reaction to gluten, a protein found in wheat, barley and rye.

People diagnosed with coeliac disease must maintain a strict gluten free diet for the rest of their life if they are to avoid very serious complications. 

It is not ‘just a gut issue’

Many people are aware that coeliac disease can cause a number of gut-related symptoms. 

Sarah Sleet, chief executive of Coeliac UK, says even though awareness has grown, there still exists a perception that the disease is not that serious because it requires a gluten free diet as its medical treatment.

“Many see coeliac disease as just a disease of the gut, when in fact it is a systemic disease that can affect other parts of the body,” she says.

“A coeliac disease diagnosis is often missed because the patient is not presenting with gut symptoms, but rather they may present with neurological symptoms and are directed to a neurologist rather than a gastroenterologist.”

the gluten free blogger sarah howells coeliac disease

It can cause neurological problems

According to Coeliac UK, in a study of patients with newly diagnosed coeliac disease, who had been referred to a gastroenterology clinic, around three out of five had established neurological symptoms including severe headache (45%), balance problems (26%) and sensory symptoms (14%).

I found this really interesting – I often find I get a ‘gluten fog’ if I accidentally ‘get glutened’.

It’s really hard to describe this in any other way, other than this fog descends around my brain and it’s hard to concentrate of anything.

So this proves the symptoms are not always ‘just in the gut’.

It takes 13 years to be diagnosed

One in hundred people in the UK has coeliac disease, but around half a million people in the UK are currently undiagnosed.

Coeliac UK says it takes around 13 years on average for a person to be diagnosed.

Although many people present with a range of symptoms, including those that are gut related, other symptoms include mouth ulcers, anaemia, repeated miscarriages and neurological problems.

Coeliac UK urges anyone that has ongoing symptoms to visit their GP and request a blood test for coeliac disease. 

the gluten free blogger sarah howells coeliac disease

There is no cure

While we all dream of the day when we’ll be able to stuff our face with doughnuts again, there is currently no cure for coeliac disease.

The only treatment is a gluten free diet, and this must be strict – even cross contamination can cause a ‘glutening’.

It can take a while to get used to, though the amount of free from products on the market is definitely improving.

It can cause longterm health effects

In left untreated, coeliac disease can have a longterm impact on your health.

This can include miscarriages and infertility, osteoporosis and even bowel cancer.

These are all just more reasons why it is important to push for testing if you believe you might have coeliac disease, and also to keep to a gluten free diet if you are diagnosed.

the gluten free blogger sarah howells coeliac disease

Could it be coeliac disease?

If you are concerned about symptoms and think you may have coeliac disease, it’s important you discuss this with your GP and ask to be tested.

To find out more about coeliac disease and Coeliac Awareness Week, visit the Coeliac UK website here.

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About Sarah Howells

Hi, I'm Sarah! Diagnosed with coeliac disease 20 years ago, I'm on a mission to create the best gluten free recipes since sliced bread. No fruit salads or dry brownies here.

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  1. I went to the doctor in January 2020 because I have numbness in my fingers and had problems with my balance and coordination,he did blood tests and sent me for an ex ray on my neck,in case it was a trapped nerve,but I think he knew it would be coeliac disease,I went back for the results and he said it was positive for coeliac disease and would have to have a biopsy to confirm it,he said I must not go on the diet until the biopsy,I had it on 16th June and started the gluten free diet on 17th June. The balance thing is ataxia and the numbness is neuropathy,I still have these side affects,the hospital said they don’t know if they will go away,so far they haven’t,sometimes they are difficult to live with.

  2. I have had Coeliac Disease since I was about 17 years of age I am 80 now my thumbs and feet go numb every day , as I’ve got older I can’t tolerate lactose I have to stick to a strict diet.

  3. I got diagnosed with celiac disease five years ago, had been suffering for over 10 years with firstly apparent carpel tunnel which oddly I have in both wrists, then severe stomach issues told IBS then very painful joints rashes got to the point that after some research I demanded a celiac test. Last year I had a very bad vertigo attack which can not be fully explained, has left me imbalance and tinnitus could this be linked to my celiac disease and could my problems with wrists be some kind of neuropathy damage to being undiagnosed for so long, I believe looking back I was celiac as a child.