I get asked all the time how I found out I’m coeliac and what my symptoms were leading up to my diagnosis, and usually those questions are swiftly followed by a sigh and ‘I think I might have it too y’know… what do you think?’
Well it’s possible! I tell them. Because it is. We all suffer from stomach bloat at some point or another – women especially – but that alone isn’t always a signal that you’ve got a food intolerance or allergy.
There ARE, however, many other red flags on top of bloat that would make me book a wee trip to the doctor for a blood test to find out. And it really is as simple (at first!) as a blood test. I always tell people to go and get it done if they have questions in their minds as to why they’re not feeling great or exhibiting symptoms after eating, at least then if it’s negative coeliac disease can be crossed off the list!
My journey to diagnosis was a drawn out one, and many years’ worth of suffering was had before I got my answers. But now that I’m following a strict gluten-free diet I have to say I feel a million times better than I did before. My symptoms were systematic with typical coeliac disease symptoms, but I know that many other symptoms – often seemingly unrelated – can crop up throwing people (and doctors) off the scent, so being a bit pushy in the GP’s office is a must.
So if any (or all) of my symptoms below ring any bells, I’d make haste and make a doctor’s appointment ASAP!
- PERSISTENT Bloat – I had stomach bloat since I can remember. I had it all through childhood, secondary school and beyond. My stomach always felt tender and swollen and never calm or flat; my trousers at the waistband drove me mad and I couldn’t stand anything restrictive around my stomach. I mentioned this to my doctor before diagnosis and quipped, ‘Sure what women isn’t bloated, eh?!’ He looked at me like I’d just farted and replied, ‘Yes, but not CONSTANTLY bloated. That’s NOT normal. Bloat may come and go but persistent bloat is cause for concern’. Whoops! I’d had it for so many years I think I’d gotten used to it.
- CHRONIC Anaemia – Looking pasty? You’re iron levels have probably plummeted. I was a very pale child. I couldn’t run in the school races without coming last, I had no sustainable energy and walking up stairs would leave me all out of puff. My anaemia got so bad a few years before diagnosis I was hospitalised twice and had to get several blood transfusions. They thought I must be bleeding internally my red blood count was so low but never thought to test me for coeliac disease. Duh! I was sent home with a presumed stomach ulcer and box of proton pump inhibitors. Suffice to say they did eff all for my health – in fact I think they made me worse!
- Depression & Anxiety – There are several theories as to why depression is a symptom; the gut often being referred to as the ‘second brain’ and capable of directly influencing one’s mood. I totally understand this. Who doesn’t feel like a narky, crabbit oul bastard when they’re bloated or having digestive issues?! But to go a bit further it’s also got something to do with the fact that those with coeliac disease have such damaged villi in their small bowel they don’t absorb anywhere near enough vitamins – particularly B vitamins, that are imperative in helping prevent depression and anxiety.
- Brain Fog – I still get the odd brain fog moment. Not a biggy. Who doesn’t? But years ago I had so many moments of not being able to concentrate, especially at school, and it was like my head was fuzzy and in the clouds. I would stare off into space and just zone out. That definitely can be stress related too but I’d say it happened mostly after I ate. And again that no doubt correlates with the lack of vitamins and not getting enough brain-boosting nutrients needed to retain information.
- SEVERE food aversions – When I was wee I was forced to eat my lunchbox sandwiches daily. God bless my mother as she obviously didn’t know what coeliac disease was and just thought I was being fussy when I refused such wheat-filled food items! I would be gagging and regurgitating when I consumed such products, and I used to throw my lunch in the bin as I couldn’t stand it. Someone at school must have told her and she went mad! So I forced myself to eat them and told myself to stop being such an ass – everyone else is eating them, get a grip! But now I know. It is NOT normal for a child to regurgitate food, especially when it’s a pattern of refusing a particular food group. Kids can be fussy, of course, but there’s a difference in fussiness and intolerance. Vomiting back up certain food or crying to near hysterics at the thought of eating it is never OK!
- Stomach pain – I only had stomach PAIN in the latter years pre-diagnosis and this was actually why I desperately pleaded with my doctor to help me. I was losing weight, I found it hard to eat ANYTHING without it causing me severe discomfort and my mood was sinking at a rapid pace. I believe it was a move to a new city that accelerated my symptoms to the point of not being able to cope anymore. And that’s exactly what I told my doctor. I felt like an empty shell of a human being. I felt like I had nothing inside. I believed my depression was causing psychosomatic physical manifestations and causing such pain – not realising it was actually the other way around! I even went back on antidepressants in a bid to feel better. And that’s when I casually mentioned the bloat (Thank God!) and what lead to my diagnosis. There were two occasions when my pain was so severe I thought I was dying. I can only liken it to thousands of paper cuts inside my stomach being drizzled in lemon juice for hours and hours with no relief. I vomited and turned blue and keeled over and begged for help. I presume that perhaps the inflamed lining in my small gut had maybe bled or split open and my stomach acid was seeping into the wound. I don’t know. Doctors are a bit useless I find when it comes to this kind of thing. They seem disinterested with conditions that can’t be blasted with tablets. Food aversion a cure?! Nonsense!!! Maybe I just had a bad experience. It was definitely an experience though, and one I hope to never have to suffer again!
There are loads of other symptoms to watch out for and things I noticed happened to me over the years that are probably related to being a coeliac: random rashes; dry, blotchy skin; changeable bowel habits; other food sensitivities; muscle weakness, allergies to inoculations; penicillin allergy etc. But the symptoms above were the dominant and glaringly obvious ones for me.
As I’ve said, it’s really as simple as a blood test. If that comes back positive, you then get a gut biopsy to confirm the diagnosis but you’re conked out for that so it’s not a scary as it sounds.
For the years of well-being you could gain from finding out NOW – don’t hesitate. There really is no excuse! If you have a feeling somethings up then it may well be. Don’t be told you’re a hypochondriac – your body, your health, your life. Take charge of it!