If awareness of coeliac disease amongst doctors were high, this is how my story might read:
“Throughout my teenage years, I tested positive for anaemia, and my doctor suggested it could be coeliac disease. I took a blood test, followed by a biopsy (all the while still eating gluten) and coeliac disease was confirmed. I switched to a gluten-free diet and felt much better, thank you.”
Unfortunately life is messy and symptoms come and go. Some doctors are great, others are dangerously negligent assholes who think everything is “all in your head”. None of this is helped by the fact that in London it’s pretty common to see a different doctor every time you make an appointment, so the variety of symptoms that make up coeliac disease often never get put together.
For Gut Feeling Week, a lot of people have been sharing their diagnosis stories, and I wanted to share mine, but I’ve been putting it off. I would say I am about 80% of the way to full health, but thinking about diagnosis (and before) brings up painful memories about how ill I was, how much I suffered and thought it was normal.
Coeliac disease is heavily under-diagnosed, partly because its symptoms can have very little to do with the gut, manifesting all around the body. The heavy handed “diagnosis” of IBS among GPs may also be to blame. I am telling you my story, with all the unpleasant and personal details, in the hopes that it will encourage more people to get tested.
I should point out that you may experience none of what I have and still have coeliac disease. Everyone’s story is different. But if you recognise a symptom, please talk to your GP about arranging a blood test for coeliac disease.
For more information about coeliac disease and this year’s Gut Feeling week, please visit the Coeliac UK website.
Barely noticeable beginnings
Since I was diagnosed aged 25, I have spent quite a while reflecting on when my symptoms first started and thinking about things in my childhood and teenage years. Coeliac disease has a genetic component (after I was diagnosed my mum was found to have it too, after decades of stomach troubles) but it is thought that it often presents itself only after a trigger. This trigger can be anything that puts a stress on the body such as puberty, pregnancy, a nasty virus or infection, or a traumatic event. This trigger must happen in conjunction with eating gluten (hence why there seems to be a higher prevalence in the Western world). For some people the trigger is obvious, but I can point to a few events in my life that may have set it off.
Certainly my symptoms got progressively worse at two points: after puberty and after a head injury aged 22 (the incident that finally triggered full blown gut problems). But as a child it’s not surprising my symptoms got missed. I was an extremely fussy eater, although I gladly ate wheat products. I remember that most food except for bland, plain food made me feel nauseous – so my diet consisted of white bread, ham, chicken, cereal, milk, chips, white rice – that sort of thing.
I also always seemed to be in trouble at the dentist, who told me to brush my teeth better, despite the fact that I was always very diligent about brushing my teeth. I now know that I had poor enamel formation, still noticeable on my two front teeth. My current dentist tells me that the white blotches visible would have been formed around age 2 or 3 – leading me to suspect that coeliac disease has been with me all my life.
At a young age I got used to being ill all the time. A cold would always last for at least a week and invariably leave me bedridden. During winter I would always get probably 2 or 3 colds which could last up to 3 weeks each. I had flu as a teenager which left me completely unable to move. I’d sometimes get swollen glands for no reason. Mouth ulcers were a common occurrence. This carried on into my teenage years, when I put it down to stress and a bad immune system. I shrugged it off.
After puberty, I developed lactose intolerance, and cereal with milk in the morning would give me stomach cramps and bloating. I didn’t know what else to eat as the only other thing I would eat would be toast with Nutella (which also contained milk… and gluten!). So I put up with it.
Through puberty and my teens I also developed anaemia and depression, which were dismissed by doctor after doctor and also by some of my friends. (Side note: if someone comes to you and tells you they think they have depression, don’t tell them “I don’t think you do” because it makes you sound like the biggest ass in the world). I was always tired and always hungry, and I did a lot of sport and extra-curricular activities. I don’t know how I made it through those years without collapsing even though I ate like a horse.
Age 18 and 19, I started drinking alcohol, and ate a great deal more but lost weight. This mainly happened while living in Germany: where I was drinking beer, even though I didn’t like it much, and eating a great deal of gluten-heavy food.
I suppose my body got fed up with being starved for nutrients because once I started university, I started eating more and putting on weight. The ravenous hunger that I could never seem to get rid of even caused someone in my halls to tell me I “eat like a savage”. What a great guy.
All of the symptoms I have described so far got progressively worse and carried on until aged 22, when I had a head injury which, while medically insignificant, did trigger the worst of my coeliac symptoms. I suffered post-traumatic stress for many months and after that point events in my life caused me far more physical stress than they had before. My stomach would be a churning pit of nerves and often in threatening situations I’d feel the adrenaline rushing through my arms and legs. Whether this was made worse by the coeliac disease I don’t know, it could have been a normal reaction to what I had gone through. Even after going gluten-free I still suffer from anxiety.
It took another year before I really noticed the gut problems, during which my periods completely stopped and I was “diagnosed” with PCOS. I started putting on weight but I also starting cooking more, eating more healthily than I had ever done. By this point I was certainly no longer a fussy eater! However, this healthy eating still included gluten. I commonly had a “pregnant belly”, when my stomach swelled so much I could have passed for 6 months pregnant.
It was after a hen weekend that I knew I needed to take my gut seriously. I was still fixated on lactose, but I began to wonder about soy since I’d had a violent reaction to a couple of soy products in the past. I went to my GP and (without any blood tests) she told me it could be IBS and referred me to a dietician. The referral took about 4-5 months, during which times my symptoms were at their worst. The fatigue was so bad I could barely get out of bed some days, and I was surprised when I had a bowel movement that wasn’t diarrhoea. I was also confused, agitated, moody and depressed. There was clearly something very wrong.
When I went to see the dietician, she assumed IBS (as they do), put me on the low FODMAP diet, and told me to introduce foods one by one. That was my first experience eating gluten-free, and it still didn’t occur to me that gluten could be the problem. I had never even heard of coeliac disease.
My first gluten-free pizza was a disaster. It tasted like a stodgy, bland, biscuit. So when it came to reintroduce gluten, I rejoiced! This time I would do a base with half wheat flour/half rice flour… surely a little gluten would be better than lots of gluten? Ha! Oh Sam…
My stomach exploded outwards and I had a very violent reaction. When I told my dietician she told me I should get tested for coeliac disease since my reaction was so bad. At this point I had been gluten-free for 3-4 weeks, and no one told me I should start eating gluten again for a while before getting tested.
At this point I was in denial… surely it couldn’t be that bad? Aren’t my symptoms relatively benign? I had convinced myself after years of doctors shutting me down that it was all in my head, or my own fault somehow.
When the doctor wouldn’t give me the all clear over the phone, I knew the worst was true. That night I stubbornly ate a giant naan bread, knowing that it would likely be my last and felt truly awful.
I didn’t see my usual doctor when I came in for the results, and I had to tell him why I was there and what they were testing for. He said these exact words to me “You have coeliac disease”. I asked, “What now?”. He gave me a look that said “Don’t be so stupid” and basically said “Just stop eating gluten”.
So I did. And it didn’t take long before I felt a million times better.
The next day I moved house (and therefore doctor’s surgery). I had researched coeliac disease, come across Coeliac UK, and had a vague sense that there should be further tests done, but at this point I was still relying on doctors to know what they were talking about. My blood tests for iron, calcium came back ok, but I was rather deficient in vitamin D. I asked about bone scans and biopsies. I was told they weren’t necessary, but they could do a blood test in a few months on the gluten-free diet, compare the results and diagnose me from that. I was confused. As far as I was concerned I had already been diagnosed, hadn’t I?
A few months later I had my follow up blood test and the doctor (yes another different one) told me that my blood was now normal, but my files had finally been sent through and my original blood tests actually only indicated a “borderline” coeliac response! I was furious – furious at all the doctors who had let me down, lied to me and prolonged my suffering with their incompetence. The doctor now strongly recommended I eat gluten for 6 weeks and get a biopsy. I declined, but agreed to be referred to a gastroenterologist.
When I finally got my appointment, I explained how 6 weeks of eating gluten would be an absolute write-off for me – I would be ill the whole time and it would severely impact my health. The CONSULTANT DOCTOR suggested I only eat gluten for 2 weeks prior to biopsy. I thought “They must know what they’re talking about!” and agreed, skipping merrily away in the knowledge that I would only have to bear it for 2 weeks.
That evening I got a phone call from the person who conducts the biopsies. She told me how she was puzzled as to why I had been put down for only 2 weeks of gluten and said in no uncertain terms this was not long enough. I begged and pleaded with her but she told me she had done many biopsies and 2 weeks simply isn’t long enough to be certain of damage to the gut. I cried down the phone. It had become much too much and everyone I saw was telling me something different. She sympathised. I believe she was the first person in all of this who actually understood coeliac disease and what a toll it can take on someone. I told her how I didn’t WANT to eat gluten ever again, and she told me that at the end of the day, it was my decision.
I cancelled the biopsy and haven’t eaten gluten since.
So that is the awfully long-winded story of how I DIDN’T get officially diagnosed with coeliac disease, but it became crystal clear to me that coeliac disease is what I have. I now get about one cold a year, and I can usually work through it. Mouth ulcers are uncommon, but pop up immediately after an accidental glutening. Ditto for diarrhoea. My teeth are in great condition, apart from the blotchy enamel. My lactose intolerance has virtually disappeared. But the depression and anxiety linger on.
The permanent damage has been the erosion of my trust in doctors and a dangerous insistence on self-diagnosis. I think it was made worse by the fact that it wasn’t just one doctor who got things wrong, it was at least 6 or 7 different doctors who contributed to a long and difficult diagnosis. Don’t get me wrong, I still believe in science. But I know how overworked doctors are, and how reluctant they are to look past the most obvious scenario (stress, IBS, etc).
Blogging and the community I have met online have been crucial to my adjustment to a gluten-free life. I was reluctant to tell my story as I still have the tendency to dismiss my former symptoms as if they were nothing much, and put on a happy face. But after writing everything down for the very first time, I see what a shadow it has cast over my youth, and often wonder what I would have accomplished if I had been diagnosed earlier.
If you are concerned you have coeliac disease, or identify with any of the symptoms I have mentioned, follow these steps:
1. KEEP EATING GLUTEN (equivalent to 4 slices of bread a day for at least 6 weeks)
2. Ask your Doctor to do a blood test for coeliac disease.
3. If the results come back positive or borderline, KEEP EATING GLUTEN.
4. If you have a positive blood test but negative biopsy, you may still have coeliac disease. Ask if they can diagnose you by comparing your blood tests after 6 months of eating gluten-free.
5. Once you are diagnosed, STOP EATING GLUTEN! 🙂