Diagnosing Coeliac Disease And Living Gluten Free

Coeliac disease is an autoimmune condition. It is not to be confused with a gluten intolerance or a fad diet. People with coeliac disease have an immune response when they ingest gluten. Continued exposure to gluten causes damage to the villi in the intestine. The villi are finger like structures that usually stand upright and help the body to absorb vitamins and minerals from the food we eat. In those with untreated coeliac disease the villi become flattened and can no longer perform their function.

What are the symptoms of Coeliac disease?

There are a wide variety of symptoms that indicate possible coeliac disease, a majority of the symptoms are rather nondescript and could be indicative of many illnesses.  That's why it's suspected that coeliac disease goes untreated for 10-15 years before a diagnosis is made. The most common symptoms are:

• Gastrointestinal issues (stomach ache, flatulence, foul smelling diarrhoea, bloating, indigestion)
• Unintentional weight loss
• Tiredness and lethargy (caused by vitamin and mineral deficiencies and malnutrition)
• Fertility issues (coeliac disease is tested for in those with repeated miscarriages) 
• Itchy rash known as dermatitis herpetiformis 
• Nerve damage known as peripheral neuropathy (numbness and tingling, shooting pain, muscle weakness) 
• Ataxia (issues with balance, coordination and speech) 

I was diagnosed as having Coeliac disease in March 2020 but my symptoms began around 9 years before that. I developed an itchy rash across my back, I saw a gp, several over the years and the rash was simply put down to being stress related. Once I received my diagnosis and began my gluten free diet the rash instantly disappeared. 

I began suffering with stomach pains every lunchtime during pregnancy. I put it down to being pregnant, when the pains continued beyond pregnancy I just put it down to 'one of those things that happens after you've had a baby'- it genuinely never occurred to me that this wasn't normal and was a sign that my body was attacking itself. I would be in such pain that it would make me feel sick and it would only stop once I'd been to the toilet. I had this every single day for 3 years! The moment I began my gluten free diet it stopped. Immediately. I was amazed that gluten could have caused me so much pain and I was annoyed at myself for letting it go on for so long. 

I'd had anemia on and off for 5 years prior to my diagnosis and in the months before my diagnosis I'd had an MRI on my knee as I kept getting significant joint pain. I'd also become forgetful and confused.

How do you get diagnosed with Coeliac disease?

As with most coeliac sufferers I'd actually gone to the doctors for something else. I'd had repeat throat and ear infections for several months, I felt tired and drained and was sleeping alot. The doctor took some bloods and I was severely anemic as well as deficient in various vitamins. At this point I was given supplements and told to return after 6 weeks. Throughout this time my symptoms continued and when I had repeat bloods my iron levels had barely increased. I was then referred to the  Gastroenterology department for further investigation. The doctor needed to do some further bloods before my referral and these included the antibody test that is used to diagnose coealic disease. If you have coeliac disease and you are consuming gluten then your body produces antibodies which show on blood tests. It's important that you are consuming gluten prior to these tests to ensure a more accurate result.

I checked my bloods online after a few days and was really surprised to see I'd had a positive blood test for coeliac antibodies. It was scary to think of how much my diet and lifestyle would need to change to accommodate this new lifelong autoimmune condition I now had. It's important to confirm a coeliac diagnosis with an endoscopy and so I was still referred to the hospital to see a gastroenterologist and to have the procedure which involved a camera being placed down my throat and into my intestines where the doctor looked for signs of damage associated with coeliac disease and took a biopsy to be sent for analysis. I was told to begin a gluten free diet immediately following the procedure. It is usual to wait for the biopsy results but my procedure was performed the day before the first national lockdown and so I think the doctor anticipated a delay in my results and wanted me to be as comfortable as I could as soon as I could. 

How do you treat Coeliac disease?

The only way to treat coeliac disease is with a completely gluten free diet. There is no cure and no short cuts. Even a crumb of gluten can cause a gut response and it's this response that can be so dangerous. Those with coeliac disease who still consume gluten are increasing their risk of certain cancers and are exposing themselves to malnutrition and the tiredness and loss of function that comes with it. Nerve damage, joint pain and osteoporosis can also occur. Fertility issues are sometimes caused by untreated coeliac disease and it's one of the things they look for in those that experience repeat miscarriages.  Those with coeliac disease are also at risk of developing other illnesses such as Type 1 diabetes and thyroid problems. It is significantly more than just the 'bloating when you eat bread' that people think it is.

Where can I get help dealing Coeliac disease?

There are plenty of online resources to help understand coeliac disease. I have found Coeliac UK to be very helpful. They have an app that can scan food and tell you whether it's safe for coeliacs to eat, they have digital resources such as a website and they have printed resources such as their printed guide to the foods you can eat and their regularly published magazine. A full subscription that includes all the digital and printed information costs just £27 per year and has been invaluable throughout my first year. I have also joined some gluten free Facebook groups that have provided a lot of information and companionship when I've felt a bit like 'the only one' with coeliac disease. 

There are some fabulous gluten free bloggers out there that have some great recipes so coeliacs don't have to miss out, my favourite is Becky Excell over at glutenfreecuppatea.co.uk, she has a book coming out soon, entitled How To Make Anything Gluten Free which I'm excited to peruse.

I was lucky in that my gastroenterologist was really helpful and I had a phone consultation with a dietitian which helped me understand the changes I needed to make within my diet and warn me about the common mistakes people make when first starting out- did you know that there is gluten in soy sauce, most seafood sticks and some stock cubes?

There's been a distinct lack of medical input regarding being diagnosed with Coeliac disease but I believe this is largely due to the Coronavirus pandemic. Everything has been handled over the phone and I have had to push for further blood tests as my iron tablets were stopped by a GP too soon resulting in me becoming anaemic again. I also feel that there should be the option for some mental health input following a diagnosis. I found it very emotionally draining giving up certain foods, especially as I am a known emotional eater. Due to Covid, I haven't had to eat at many social occasions but I'm dreading birthday parties, weddings and events where I am 'the one with dietary requirements'. Though I've now grasped the practicalities of living gluten free I feel I still have a long way to go in terms of emotionally accepting I have a life long condition that means I'll never be able to eat KFC again!

 If  you're a fellow coeliac and have any hints and tips please leave them below. Feel free to link up any gluten free/coeliac resources below. Click here to read how I'm coping with coeliac disease a year down the line.

Thanks For Reading 

*sources used alongside my experiences: https://www.coeliac.org.uk/home/ and https://www.nhs.uk/conditions/coeliac-disease/