Posted on 13/05/2019

Coeliac disease: gluten free and me

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Coeliac disease: gluten free and me

What happens when the food you eat is making you physically and mentally ill? We spoke to a young woman living with coeliac disease to discover the impact gluten has on her body, mind and daily life.

Coeliac disease (pronounced ‘see-lee-ac’) is an incurable auto-immune condition that affects around 1% of the UK population. It’s caused by the body triggering a reaction to gluten – a protein found in grains such as wheat, rye and barley.

Gluten is attracting lots of attention at the moment, with thousands of people believing an intolerance or sensitivity to gluten plays a role in their digestive issues, amongst other minor health conditions, with many finding relief from a gluten free diet. People living with coeliac disease are different; they are not just intolerant to foods which contain gluten, they actually experience intense, often uncomfortable, symptoms caused by their body believing gluten to be an invader that needs to be removed. This causes the body to mistakenly attack its own tissue – predominantly in the gut – reducing the amount of nutrients that the body absorbs, and resulting in coeliac disease symptoms.

We spoke to Aimee, a 34-year-old digital marketing manager from Leicestershire, who was diagnosed with coeliac disease around a year ago, to find out more about the condition and how it affects her daily life.

Symptoms of coeliac disease

Coeliac disease symptoms often include unpleasant and chronic digestive problems such as diarrhoea, constipation, bloating and flatulence, and the condition is often initially misdiagnosed as irritable bowel syndrome. Symptoms may also include a variety of other issues such as weight loss, rashes, reduced fertility, depression, anxiety, nerve damage, fatigue and ataxia. Aimee found out just how debilitating coeliac disease can be.

“I was feeling extremely ill all the time. No energy. No sharpness of thought – complete brain fog at all times. Constant burping and swelling of my stomach and falling asleep within five minutes of eating anything. It was also making me feel very down. It was awful.

“It got to the point where I couldn’t concentrate at work and the real kicker came when I was driving home one day and just forgot how to drive. I know, it sounds ridiculous.”

Coeliac disease most often develops in later life, and research continues to explore the potential causes of the condition – aiming to discover why the body’s immune system responds to gluten in this way. Aimee believes she knows the cause of her coeliac disease, putting it down to another autoimmune condition, as well as the impact of stress, both of which she has lived with for a little while.

“I had been diagnosed with a slightly under active thyroid about 3 years prior to this, but nothing to really worry about. However, I was told that my levels had spiked and basically my thyroid had crashed. I was signed off work for 3 weeks while the medication got into my system. Slowly but surely I started to feel more normal as the days went by but my anxiety was through the roof (you kind of lose confidence in your own ability as a human when you randomly forget how to drive and speak in fully formed sentences!) So I had to take beta blockers to take the edge off the erratic heart racing and head spins. After around a month, I was still noticing horrid effects from eating some foods…

“The doctors said that my thyroid problem could have been a catalyst for developing coeliac disease. Once you have one auto-immune problem, you’re likely to get another. I stand by the fact that stress was the reason I got either issue. Stress broke me and because I ignored the warning signs and just kept charging on working 10 hour days and exhausting myself, my body said 'no more' and forced me to stop. There’s a lot to be said for work pressure. That’s why, now, I put myself first. A bit of a horrible wake-up call...but a necessary one. My priorities were all wrong.”

The pain was absolutely awful

Coeliac disease is usually diagnosed with a blood test, and if coeliac antibodies are found, a gut biopsy in hospital is usually the next step. Aimee’s diagnosis followed a slightly different process, one which she will never forget.

“I was referred to a specialist at Loughborough hospital who ran through some questions with me about anxiety and toilet habits (all very lovely stuff). He came to the conclusion that it may be IBS, but referred me to Burton hospital for some official tests.

“Let me tell you, those tests are now buried deep down in the box of repressed memories. Absolutely horrendous. I had to have a tube put all the way up my colon (the pain was absolutely awful) and, worse still, a tube put all the way down my throat – both of which I was completely conscious for. I was sedated as much as possible (and the doctors told me afterwards that I had kindly told them all that I hated each and every one of them and I hope someone shoves a tube up their bum – ha!). It was bad, I can't deny, but the benefits of knowing and changing my life for the better totally outweigh the negatives. Plus, being sedated was pretty funny.

“After about a month I got a letter through the door confirming that I had indeed got coeliac disease. I was shocked, but looking forward to brighter days where I wouldn't feel like a close relative of Sloth from the Goonies.”

Gluten free diet for life

There is no cure for coeliac disease, and no drug treatment for the condition. The only way to reduce and manage coeliac symptoms is to avoid gluten completely, and follow a gluten free diet forever; this works for the majority of people. Gluten is found in wheat, rye, barley and any foods containing these products. Wheat flour is the most commonly used type in most breads, pasta, cereals, pastries and sweet items such as cakes and biscuits. People with coeliac disease need to avoid all these foods or choose ‘gluten free’ options which are widely available nowadays.

Many other food products, particularly those that are ready-made, such as gravies, sauces, sachets, flavourings, starches etc, will have gluten-containing ingredients. Those with coeliac disease who choose to eat out must be extra careful about choosing gluten free (GF) options, and ensure the particular restaurant avoids cross-contamination when preparing meals.

“My symptoms got a lot better after getting the right level of levothyroxine in my system and keeping gluten far, far, FAR away from me. Everything I consume is gluten free and I now eat most carbs (GF of course) in the daytime to keep me steady. I kept a food diary and I noticed things about my energy levels if I ate very heavy in the evenings. I still get very tired if I eat big meals. The key is little and often and recognising when you're full. Also, I am getting back into my running again as, when all of this health stuff kicked off, I wasn't even able to hold a 5-minute conversation, never mind a 5K run!

“I ate out in a well known food chain once and was assured that the meal was gluten free. It was not. The pain I was in after cutting it out of my diet for months was so horrendous. It feels like your insides are on fire. Ain't no piece of food, no matter how delicious, worth feeling that for. If gluten gets into my system now, it's at least four hours of pure agony, sweating and crying before it eases off and the only saving grace is water to flush it out.”

It seems then, that living with coeliac disease and engaging in a permanent gluten free diet has many challenges.

“If I overindulge, I suffer for it. It wouldn't matter if I was having dinner with the Queen, if I had eaten too much, I'd fall asleep mid conversation. (Sorry Liz).

“It can also be a bit of a pain if I'm going to an event of some kind. I have to be proactive about getting things in place where food is concerned. I used to feel like 'a pain', but now I've accepted that my body just cannot take it and this is just the way it is. I feel so much better for it, so I own it.

“Having to check the back of every single food packet and taking ages to get to know what I could and couldn't eat was a challenge. However, it just encourages you to cook from scratch and because of this, you automatically start engaging in a healthier diet. I do have to keep my wits about me though. There's a real lack of understanding out there so if I'm eating out, I have to make extra, extra sure that what I have been served is, in fact, gluten free.

“Also not being able to eat cake that is brought into the office. That kinda sucked big time at the beginning, but now I look at it as a positive (keeping the calories down!)

“There's so much more gluten free choice out there now compared to days gone by. I really take my hat off to anyone that has had to cope with this when awareness was practically zero. My only problem is the price. £2.80 for 4 x gluten free bread ‘thins’ compared to £1 for 6 normal ones hardly seems fair!”

Aimee is clearly managing her condition, taking care to avoid her symptoms and feeling much better for it. As such, she has some advice for people newly diagnosed with coeliac disease.

“Staying diligent is a game changer. Don't be scared. Having been through the horrible symptoms that led you to having the tests in the first place, take it from someone who knows, when you've gone completely gluten free you're going to feel SO MUCH BETTER! And it keeps getting better. I was told that it can take up to two years for your digestive system to return to normal, so I still have another 12 months to go. But man, I feel (dare I say it) almost back to normal (or at least heading that way). And, GF biscuits are so much better than normal ones!”

We would like to say a huge thank you to Aimee for her honest account of living with coeliac disease. If you are concerned you may have symptoms of coeliac disease, or if, like Aimee, you are managing the condition with a gluten free diet, you may wish to contact Coeliac UK for further advice and information.

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