Living with coeliac disease

Woman Eating From A Bowl

We're looking at all things food this month, and today, TalkMum blogger Katrina talks about suffering from coeliac disease and how it affects her life on a day to day basis.

Allergies and intolerances are topics that have recently seen increased exposure in the media. All allergies are serious, and people who find themselves in the grips of one will experience unique symptoms – allergic reactions are rarely generic. There may be similarities, of course, but manifestations and severity can differ massively from person to person.

Unlike the classification of a nut allergy which causes serious- life threatening Anaphylaxis shock, coeliac disease isn't actually a 'food allergy' it is an autoimmune disease: where by eating gluten causes the lining of the small intestine to become damaged, other parts of the body may be effected also (it’s a 'multi system' disorder). Anaphylaxis can still occur; gastrointestinal symptoms may include cramps, abdominal pain, diarrhoea, and vomiting.

Once diagnosed, it's a lifelong condition and the only treatment is a gluten- free diet. If you attempt to re-introduce gluten at any time, your immune system will react and your intestine lining damaged again.

The good news is, following a gluten-free diet will allow your gut to heal and in time able to return to 'normal' function. The bad news is, if you think you have coeliac disease and you have been eliminating gluten from your diet before getting tested, the antibody tests (typically a blood test, or gut biopsy) carried out to detect the disease will likely return a negative result - there may be no antibodies in your blood, because there is no gluten present for your immune system to react with.

Basically, it’s a pain in the backside to diagnose, and a massive bore to live with. It's been reported that a coeliac disease patient will wait on average ten years for a correct diagnosis. It's regularly misdiagnosed (IBS being the main enemy) and this is despite huge advances in medicine and an increased education/ awareness amongst healthcare professionals.

My best advice is, if you suspect anything, keep a food diary (documenting any reactions) - I appreciate this is a laborious task, but it'll be the first thing any dietician or gastroenterologist will ask you for. Do not cut out gluten (see point above). Visit your GP and ask for a blood test- 90% of the time this will give enough indication if further investigations (endoscopy) are required.

Don’t be afraid to persist with GPs and specialists- or seek a second opinion (again, see point above re: misdiagnosis). After all, you know your body best.

However, it isn’t all doom and gloom! I've been living with this for nearly 13 years, and eating gluten-free really shouldn’t be viewed as hugely restrictive, or negative. Initially the adjustments may feel overwhelming, but no more so than any other lifestyle change. It’s about you taking control of mindful, ‘clean’ eating: Consuming nutritious, natural, simple food, not packed with additives and bulking agents (that are designed for the convenience retailers). Over time, your new way of eating will become second nature. Just avoid watching programs like The Great British Bake Off... you may find yourself shaking your fists at the screen, and those gluten laden creations in utter frustration!

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