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ADVICE Topic 11: Coeliac Disease

A.D.V.I.C.E Topic 11: Coeliac Disease

What is Coeliac Disease?

The official definition of Coeliac Disease from the NHS and Coeliac UK is as follows:

Coeliac disease is a serious illness where the body’s immune system attacks its tissues when you eat gluten. This causes damage to the gut lining and means the body can’t properly absorb nutrients from food.

Coeliac disease is not an allergy or food intolerance; it is an autoimmune disease caused by a reaction of the immune system to gluten – a protein found in wheat, barley and rye.

Research has found that people with the condition have genes which means they may develop coeliac disease, but we don’t yet know why. It is important to understand that people with untreated coeliac disease will most likely be experiencing problems from additional ailments caused by a lack of crucial nutrients your body needs to keep you healthy.

Coeliac disease is common and affects one in 100 people, meaning hundreds of thousands in the UK have coeliac disease. But half a million don’t know it and may still struggle with unexplained symptoms.

If a first-degree family member (such as a mother, father, sister or brother) has the condition, the chances of having it increase to one in 10.

Could you be coeliac?

Here is a story from a 24-year-old female who, after years of suffering from the age of 12, was finally diagnosed with the disease in 2015:

“I was diagnosed with coeliac in 2015 after experiencing extreme fatigue, which I knew wasn’t right for being a young and healthy teenager. Following a referral from the GP, further investigations began, at which point my blood levels displayed an abnormality in my TTG levels (t-Transglutaminase).

I was referred for a biopsy for a coeliac diagnosis. Since the diagnosis, I have had to alter my diet to be gluten-free, which was a big challenge. I gave myself a target to become gluten-free on a set date before a group session, discussing what can and can’t be included in the new diet. To anyone who is coeliac, visiting a dietician is worthwhile, as some of the foods that I thought were gluten-free were not, such as sausages, meatballs and burgers. Although they are meat products, they are filled with wheat which goes against a coeliac diet.

At the beginning of my diagnosis, gluten-free product variety was limited; however, as the years have progressed and the awareness of the disease has increased, there is a wider selection of gluten-free alternatives to the commonly known brands.

Even though I have a greater understanding of what coeliac does to my body, I can’t be vigilant in my surroundings, for example, sharing of any cutlery or sharing grocery items such as butter. If a family member or a work colleague before me has used a piece of cutlery and spread the butter on wheat bread, then gone back to the butter for more, traces of gluten contaminate the product, which will then trigger my symptoms. I didn’t think being diagnosed with this condition would go as far as being so meticulous.

Mentally, it is challenging to keep to the strict diet, especially because all I knew up to 2015 was eating what I loved, and then ultimately, from that year, I had to do a U-turn. Fatigue can be particularly challenging, even when following a strict diet; there are days when I could feel like falling asleep and have no energy at all.

This makes daily life a little harder, and the disease can affect my work-life balance.”

Coeliac Disease in Children

  • Coeliac disease affects one in 100 children in the UK.
  • Most children are undiagnosed and don’t get diagnosed until later in life
  • Symptoms include diarrhoea, constipation and other gut symptoms, growth or change in growth pattern, irritability and a bloated tummy
  • Undiagnosed, untreated coeliac disease has a greater risk of complications, including impaired weight gain and growth problems, delayed puberty, iron deficiency anaemia, chronic fatigue and osteoporosis
  • A gluten-free diet should only be given once a child is formally diagnosed with coeliac disease by a healthcare professional

The first step in diagnosis is to discuss your concerns with your child’s GP, or you can take an online assessment by visiting: www.isitcoeliacdisease.org.uk

You can print these results and take these to a doctor to help with your conversation.

Mental Health

A wide range of psychological problems can arise for those with untreated coeliac disease. Initially, psychiatric illness may be misdiagnosed due to some neurological and psychiatric symptoms that can be seen if untreated. Once diagnosed, adjusting to a new diagnosis of chronic illness and adherence to a gluten-free diet may be difficult. A 10-22% increased risk of neurological disorders is reported in patients with coeliac disease.

The most common are:

  • Mood changes
  • Anxiety
  • Fatigue
  • Difficulties with concentration and attention
  • Decreased appetite

For further information on Coeliac Disease, access the following links:

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