I'm held prisoner by my digestive disease – a medical condition I can't overcome

Imagine going out for dinner with friends and having to order a salad while your pals tuck into a pizza. Not because you don’t want to – but because you have no choice. That’s the reality for millions of people just like me, who have celiac disease.

Being celiac means I have an intolerance to gluten. Unlike many people who seem to have adopted a gluten-free diet just for the sake of it, my body simply can not process food containing gluten, a protein found in wheat, rye and barley.

It may not sound like too much of a burden to carry, but I am almost certain that if I asked you to name your five favourite foods, at least two would contain gluten.

From pasta to pizza, burgers to biscuits, cake to crisps and even beer, celiac disease means I can’t eat the traditional variations of these treats available in most shops and restaurants. If I decided to throw caution to the wind and have them anyway, I’d inflict damage to my digestive system that could also increase my chances of developing cancer, infertility and even dementia.

I was diagnosed with celiac 18 months ago, aged 25. That meant going from being able to eat whatever I was in the mood for, to not being able to order a takeaway from my favourite Chinese Restaurant or enjoy a pint of my favourite beer, because both contain gluten.

Between August 2017 and my diagnosis in early 2018, I felt extremely fatigued, bloated and depressed. Getting up to go to work or even just lacing up my shoes for a run took ten times more effort than it had the year previously.

A blood test paved the way for my diagnosis after my results showed I was severely anaemic, deficient in iron, red blood cells, haemoglobin (responsible for transferring oxygen to muscles) and had numerous vitamin deficiencies. In reality my body was lacking many of the key ingredients it needed to function at its best, and all because I’d been eating gluten without being aware of my newly developed intolerance and had damaged my body’s ability to absorb the nutrients from food.

I walked out of my diagnosis appointment with a handful of leaflets about what I could and could not eat any longer. Even two years on, I still feel like I spend most of my life reading the back of food packaging to see if it’s ‘safe’ for me eat.

The only way I can describe the feeling of being told I can never eat my favourite pizza from Domino’s or sandwich from Subway is by comparing it to England’s defeat to Germany in the 2010 World Cup, robbed.

Steering clear of gluten affects me in more ways than most people would image. Standard porridge oats are gluten free, but they and scores of other ‘safe’ products are often made in the same factories or kitchens as food that contains gluten. That risk of cross-contamination means I cannot eat those things either. I consider myself to be pretty savvy when it comes to food, but even still when I was diagnosed with celiac I could not believe how many foods contain gluten.

Avoiding it is a huge and costly challenge. My disease means I can’t eat ‘normal’ pizza, bread, cereal, crisps, beer, biscuits, cake, energy bars, chips, burger buns, pasta, spaghetti, porridge oats, flour, noodles, pie, gravy and beer. I think you get the picture. Sure, there are alternatives to all of these, which is great, but gluten-free food is more than double the price of ‘regular’ grub.

A normal loaf of bread costs £1, whereas a gluten free loaf of bread can cost up to £3, which is the same price as 500g of gluten-free porridge oats. Almost every specially made gluten free product out there costs between 50p and £2 more than the ‘regular’ alternative, and whilst that might not sound like much, it soon adds up. My weekly shop jumped up by £8-£10 which over the course of a year, adds up to £500.

To try and help me limit the cost I do make an effort to eat naturally gluten free foods, such as meat, potatoes, vegetables, fruit, rice and cheese, which makes things easier, but this plan really comes unstuck when I head out to a restaurant for dinner with friends or family.

Many kitchens offer exclusively gluten free menus, which is amazing, but many well-known pub chains and restaurants claim they cannot guarantee food will be completely gluten free, because of where the meals are prepared.

This means that not only have I had to make huge adaptations to my lifestyle within a short space of time, my friends and family have had to as well. Before booking a table anywhere I always have to either check the venue’s menu online or phone up to ask if they can accommodate. Often, the answer is yes, but similarly often I am left to choose my meal from a reduced menu that omits several options, or opt for a different venue altogether.

More times than I care to mention, I have found myself going from restaurant to restaurant asking if they cater for a gluten free diet when on holiday with friends or visiting a new place. I owe a lot to my friends and family for being so patient with me when it comes to food, my family especially, who several times a week eat gluten free food so that we can eat together.

The awareness of celiac disease is improving and more and more places boast to offering gluten free options for people like me. But I still consider celiac disease to be one of the lesser known eating disorders, which is funny, because tens of millions of people suffer with it around the world, and millions more may have it without even realising.

May is Celiac Awareness Month – But what is celiac disease?

What is Celiac Disease?

Celiac disease is an autoimmune disease, often hereditary, where the ingestion of gluten leads to damage in the small intestine. Anyone of any age can develop it at any time in their life and medics have no idea what causes it. When people with celiac disease eat gluten, their body mounts an immune response that attacks the small intestine.These attacks lead to damage to an area of the small intestine responsible for nutrient absorption. When damaged, nutrients cannot be absorbed properly into the body causing further health problems.

An estimated 1 in 100 people worldwide have celiac, a disease that has no cure. If ignored or left undiagnosed for several years the disease can lead to multiple sclerosis, heart disease, intestinal cancers, infertility and miscarriage.

What are the main symptoms?

  • unexplained iron-deficiency anemia
  • fatigue
  • bone or joint pain
  • liver and biliary tract disorders
  • depression or anxiety
  • peripheral neuropathy (tingling, numbness or pain in the hands and feet)
  • seizures or migraines
  • missed menstrual periods
  • dermatitis herpetiformis (itchy skin rash)

Some of these symptoms sound and are very severe. The disease can cause these serious autoimmune disorders if the body’s immune system becomes so weakened by the damage caused by celiac disease, other more serious medical problems can develop at random.

Depression is a hidden symptom that occurs because when the intestine is damage by celiac disease, the body’s ability to absorb essential nutrients that keep the brain healthy is weakened. These nutrients are necessary for the production of essential chemicals in the brain such as serotonin, a deficiency of which has been linked to depression.

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