Our PR and Communications Director, Cerys Williams, shares her experience living with coeliac disease and what important information she wishes she learnt sooner.
I’ve likely had coeliac disease since I was 15, but I didn’t find out until just over a year ago. There has been a lot of information that I’ve needed to learn quickly, and sometimes painfully, over the past year. While there is a lot of useful information online, I personally felt that most of this information was either extremely hard to find, or way too confusing. I hope this article will help those with, or know someone with, coeliac disease navigate this confusing landscape, though some of the information here may be helpful to others on gluten-free diets.
Genetic predispositions to coeliac disease
Gluten is a protein found in wheat, barley, and rye that can cause a reaction in people that have gluten-related dietary issues. These include coeliac disease, non-coeliac gluten sensitivity, gluten ataxia, and gluten allergies. With coeliac disease (spelt celiac in the United States), your immune system mistakes gluten as a threat to the body and attacks the particles. This damages the surface of the small intestine, making it harder to absorb nutrients from other food.
Family members of individuals with coeliac disease are at an increased risk of developing the condition. In the UK, cases of coeliac disease are recorded to be about three times higher in women than in men.
There are two known genes that contribute to coeliac disease, the human leukocyte antigen (HLA) DQ2 gene and the DQ8 gene. Over 30 per cent of the US population carries the DQ2 gene however, only three per cent of people who carry the gene will develop the disease throughout their lifetime.
People from certain ethnic backgrounds are also more susceptible to developing coeliac disease. “From what we see, Eastern European, North African, and all over England, Wales, Scotland, and Ireland – if your family has been in that area for a long time then your family should have the gene,” says Lee Graham, Executive Director of the National Celiac Association in the US.
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Coeliac disease can be developed at any stage in life
There is no specific stage of life when someone will start exhibiting symptoms of coeliac disease. With my dad, for example, it crept up on him unexpectedly; he had no issues with gluten until he was in his 50s. With my cousin and I, however, we both got very sick as teenagers and only started showing a sensitivity to gluten after. This made it very hard to diagnose as coeliac disease, because we both thought our symptoms were from a long-term illness – not coeliac.
An external factor resulting in coeliac disease developing was not a unique experience for us, however. Graham says, “Many times we find that coeliac disease gets diagnosed after some traumatic thing in someone’s life, whether it’s having a baby, getting glandular fever, having some weird inflammation, or picking up a strange bug traveling. Even traumatic emotional problems can lead to coeliac disease.”
Symptoms of coeliac disease
Over 200 different symptoms of coeliac disease have been recorded, making it extremely hard to diagnose without a blood test or endoscopy. In adults, the most common symptoms are abdominal pain, bloating and gas, brain fog, and vomiting. In children, ADHD and delayed puberty are also common symptoms.
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Complications of coeliac disease
Coeliac disease can also cause a variety of other health complications, including bowel cancer, osteoporosis, peripheral neuropathy (tingling in the hands and feet), and dermatitis herpetiformis (red, blistery rashes). In women, coeliac disease may also cause infertility, miscarriages, and early-onset menopause.
Anaemia and vitamin B-12 deficiency are also very common among people with the disease. Due to the damage done to the small intestine from eating gluten, people with coeliac disease often struggle to absorb key nutrients such as iron, folic acid, vitamin D, zinc, calcium, and magnesium. Medical experts recommend that individuals with coeliac disease make a greater effort in ensuring they are consuming these key vitamins and minerals, whether that is from taking supplements or eating a highly nutrient-dense diet.
Oats and coeliac disease
Oats are tolerated well by most people with coeliac disease, however for others, it causes the same reaction, even if the oats are gluten free. This is because the protein found in oats (avenin) is molecularly very similar to gluten. Because the proteins are so similar, the body’s immune system attacks avenin the same way it attacks gluten, causing the same damage to occur in the small intestine.
Reactions to traces of gluten
Individuals with coeliac disease must avoid all contact with gluten, even if it’s a small amount. Coeliacs cannot share toasters, cutting boards, and sponges with people who prepare food with gluten. They also cannot use the same pots, pans, plates, or cutlery, unless sanitized thoroughly. Additionally, even if a spread is labelled as gluten free, if someone has dipped a knife or spoon in it that has touched a piece of normal bread, it is no longer safe for someone with coeliac to eat.
Unfortunately, this also applies to the dating and social lives of people with coeliac disease. Individuals with the condition cannot kiss or share food or drinks with people who have recently consumed gluten, unless they brush their teeth.
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My experience
Gluten is in so many products that I don’t think most people would expect, and it can feel overwhelming when you are first diagnosed with coeliac disease. When I first started eating gluten free, I was shocked to find out that some teas, soy sauces, makeup, and salad dressings contained gluten. Matt Bzdel, an influencer who creates memes on his account @glutenfreestreetgang, shared my sentiment: “It’s a scary world out there, but there is so much food that is safe to eat. Just get really good at reading labels, and you’ll have a lot more optionality.”
How to eat out while on a gluten-free diet
Eating out with friends as someone with coeliac disease can be very difficult if you don’t plan ahead. Spontaneity, unfortunately, is rarely an option as most restaurants are not coeliac friendly or might have poor-quality gluten free food.
“The hardest thing about being on a gluten free diet is the loss of choice,” says Bzdel. “You go out to eat with your friends at a pizza place, and they all get this delicious looking pizza and you get this sad thing on tinfoil. Or if you want to go out to eat and there is nothing you can really have, so you just eat beforehand.”
However, there are a few very good coeliac friendly options in London. Niche, a strictly gluten free restaurant in Angel, offers modern-European cuisine. Manna Dew and Libby’s are both amazing gluten free bakeries in West London. Finally, The Vurger Co. is an all-vegan chain offering American comfort food. Most of the menu is gluten free and has been coeliac safe in my experience. Additionally, if you want to find new restaurants to try, I highly recommend getting the app Find Me Gluten Free, which tells you what restaurants near you offer gluten-free and coeliac-friendly food based on other users’ experience.
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Looking for gluten free recipes you can try at home? Try Lizzie’s gluten free sponge from the Great British Bake Off!