I have Coeliac Disease.
My first week living a gluten-free lifestyle.
I’m no expert and am learning, like everyone else. This is an account of my thoughts and findings so far.
For years, as long as I can remember, I assumed that my poor digestive system, and the troubles that evidently come along with that, was “normal”.
I would eat and within minutes my stomach would sink, I’d get a grumble in my “belly” (or what I now know was actually my lower intestine) and I’d then be forced to make my way to the bathroom to relieve the pressure in my bowels.
This may or may not sound normal to you, it may also sound like too much information. But to take that a little further, the episode would often play out with violent diarrhoea, not always, but regularly.
My symptoms of coeliac disease
My symptoms didn’t all happen at the same time, in the main they happened separately and in isolation, but regularly. This isn’t a definitive list and you may or may not experience everything I have, but here’s what I’ve experienced over the last few years.
There would be multiple, lengthy toilet visits a day, many more than others in my family.
Daily, I’d feel fatigued, tired and lethargic, often feeling like I need a nap. There’d be wind. There’d be pain and bloating in my lower torso. I’d have bouts of depression and anxiety. I’d get regular mouth ulcers. I’d have itchy skin and even slurred speech.
This is symptomatic of someone who has problems. Crucially, I thought it was all normal and I put the frequent toilet visits down to irritable bowel syndrome (IBS) or lactose intolerance, and put up with the rest of it.
I was amazed to find out that the extensive list of ailments above are all related and are all symptoms of coeliac disease. I didn’t have IBS or lactose intolerance (though it’s worth mentioning that coeliacs are more likely to develop lactose intolerance).
What is coeliac disease?
What was actually happening was that my body was attacking itself, and specifically, my gut. I found out that I have an auto-immune response to gluten.
Coeliac disease is a condition where your immune system attacks your own tissues when you eat gluten. This damages your gut (small intestine) so you are unable to take in nutrients. — https://www.nhs.uk/conditions/coeliac-disease/
The lining of my small intestine has been damaged. This lining is called villi, which increases the surface area and crucially helps absorb the nutrients the body needs to sustain itself. As a result of many years of undiagnosed damage, my body hasn’t had the nutrients it’s needed and that has caused all of the ill-side effects described above. I have been generally unwell but not really known that because it’s just felt “normal” to me.
So although I’m just finding out that I have coeliac disease, I’ve had coeliac disease for years. As long as I can remember — possibly 10–13 years. Which makes sense given the average time for diagnosis of coeliac disease is 13 years. Imagine living all that time with a disease you didn’t know existed, let alone a disease you have.
Delayed diagnosis is common and our research shows the average time it takes to be diagnosed is 13 years. — https://www.coeliac.org.uk/information-and-support/coeliac-disease/about-coeliac-disease/myths-about-coeliac-disease/
How did I find out I had coeliac disease?
About 6 months ago I discovered a lump under my arm so got it checked out. Blood tests came back clear with no concerns. About a fortnight ago, the lump became inflamed and grew larger, it was an infection. At which point, my doctor informed me that the results from 6 months ago included another result that hadn’t arrived when I called. It was a hint that my “IgA” levels were raised and that could mean that my body mistakes gluten as a threat, and sends out antibodies to fight it, which in turn damages the lining of the gut.
A further test was done and confirmed high levels of IgA and that I’d need to start living a gluten-free lifestyle in order to reverse some of the damage and to start feeling healthier, and ultimately, with the hope of easing some of those coeliac symptoms; or getting rid of them altogether.
How did I get coeliac disease?
It could be genetic, it could just have happened. Being overweight or inactive doesn’t cause it, you can’t catch it and nobody who has it should feel guilty about it or feel that they caused it. Ultimately, I don’t know. My siblings, parents and children will all have tests in time, in line with NHS advice.
Get tested for coeliac disease
The main reason I’m writing this is because 1 in 100 people in the UK have coeliac disease, but more importantly, that’s severely underestimated due to undiagnosed coeliac disease…people like me thinking it’s normal and just carrying on with everyday life, ignoring the symptoms.
Ignoring symptoms is dangerous because the long term side effects of coeliac disease, if left untreated, are osteoporosis, iron deficiency aneamia, V12 and folate deficiency aneamia, malnutrition and possibly even bowel cancer in later life.
Contact your GP.
Coeliac disease is a condition that affects at least 1 in every 100 people in the UK.
But some experts think this may be underestimated because milder cases may go undiagnosed or be misdiagnosed as other digestive conditions, such as irritable bowel syndrome (IBS). — https://www.nhs.uk/conditions/coeliac-disease/
Coeliac disease isn’t something I knew about, acknowledged or thought I needed testing for. It’s not like the NHS do regular testing for it, either. It was an unrelated issue that led me to get a result for it, so it’s not easy for people to find out. NHS says that you should have a test if you have a family history of it, but if these symptoms aren’t thought to be problematic and are ignored, then your family may not have been diagnosed either.
I’m not sure where that leaves us, but it’s an issue nonetheless. The fact that it’s grossly undiagnosed or misdiagnosed here in the UK is worrying, and that is why I’d like to raise awareness through writing this post. Hopefully through the magic of search engine algorithms, someone may find this and go get a test which will change their life.
Routine testing for coeliac disease is not done in England.
Testing is usually only recommended for people who have an increased risk of developing coeliac disease, such as those with a family history of the condition. — https://www.nhs.uk/conditions/coeliac-disease/diagnosis/
What people with coeliac disease can and can’t eat on a gluten-free diet?
The list is too large to mention here, but needless to say, I was distraught when I learned that I couldn’t eat many of my favourite foods, in the form I’d been eating them all my life. Pizza, bread, cereal, cake, certain chocolates, the list is seemingly endless.
Coming to terms with that is hard, there’s no getting around it, there is no cure for coeliac disease, the only way to treat it is to avoid eating gluten, no matter how small the amount.
What people with coeliac disease need to look out for on food labels
Gluten is the general name for proteins found in wheat, barley, rye. Some coeliacs may not be able to eat certain oats either. The oats you do eat should be gluten-free and from an uncontaminated source.
When you’re in a store, you can’t look on a label to see if something contains ‘gluten’. You need to look for allergen information. In the UK, it is a legal requirement for allergen information to be included on packaging. Allergens are found in the ingredients list and are highlighted in bold.
My first week living a gluten-free lifestyle
I already feel a lot better! I’m on antibiotics for the lump under my arm, which isn’t helping me feel completely “normal” just yet, but already, I can feel that my digestive system is not giving me the symptoms I am so used to. No more rushing to the bathroom, for example.
I’m still feeling some symptoms when I eat gluten-free muesli, which is my substitute for my daily bowl of Cheerios! So I will still have to check I can still eat oats, but I also felt similar symptoms when I had cheese on gluten-free bread, so I may have a lactose intolerance. It’s going to be trial and error for a while in order to get used to the new regime, in whatever form it may take.
My first real dietary disappointment was a visit to the store to find that Cadbury’s Dairy Milk chocolate includes wheat, moving along the aisle, finding that Yorkie does too…and Milkybar. So, being a lifelong chocoholic, my limited confectionary diet is now Toblerone and Galaxy until I start to find more. Wine gums seem to be fine too.
My first non-dietary disappointment was finding out that I needed to pay, an admittedly modest monthly fee, for membership to www.coeliac.org.uk in order to use the only app in the world that seems to be able to scan a barcode and tell me if something is safe to eat or not. Reading labels is fine, but it’s nice to have an app (still read labels just in case!). I guess the annoyance comes from the fact that I didn’t choose to be like this or have coeliac disease, so having to pay to get help with it sticks in the throat a little. A small price to pay perhaps for the great deal of information they have on their website and for the convenience of knowing that my Toblerone is a safe eat!
I learned that the gluten-free aisle in Sainsbury’s is a lot fuller than I expected. It had lots of nice things like ciabatta, cakes and nice breads. So I’ll not go without much, I’ll just have to get used to a new kind of taste…I won’t lie, gluten-free bread isn’t as nice tasting as regular bread made with wheat flour.
I woke up this morning, not feeling energised or particularly different, but rather, neutralised. I feel like my body has regained some kind of balance…normality, I expect. My thoughts are more focussed, I don’t feel as tired and am not wanting a nap. I feel like I can do things again. I’m writing this article!
I’ve found that it’s easier to focus on what I can eat rather than what I can’t.
In conclusion — coeliac disease recovery
I’ll report back on how I feel in a few months time and how I’ve navigated through this journey. Working out whether I can still enjoy oats and dairy…that’d be the next hurdle if I have to avoid those too, let’s hope not!
I read that it can take from two months to a few years, depending on age, for your gut/small intestine lining to start to recover and reach some kind of normality. I’m yet to read if it makes a full recovery but that’s the dream. In the meantime, I’ll take the appropriate steps to ensure I stay healthy and keep feeling better.
