Who the hell am I?
If you'd asked me that 5 years ago I wouldn't have been able to tell you. I may have blubbed incoherently that I was an anxious mess, low in confidence, hated my job, felt trapped in my own life and was screaming for help but no one was listening.
In fact I can rewind back another 10 years at least to see when the descent into this resultant mess really began. Throughout my childhood and teenage years I suppose I never felt quite right. A tummy ache here, a lot of gas there, a constant and relentless stream of nerves and anxiety that dictated my every move, and reduced me to tears at the slightest upset. When the 2000's came around I enviously watched as my friends flaunted their midriffs a la Britney Spears. I wondered why their stomachs were flat and toned but I looked like I was in my third trimester after devouring my first pop tart of the day. Going out became an anxious affair. My friends drank and danced in skimpy dresses while I found ways to conceal my bloated tummy. Thick denim skirts became my closest allies. I didn't give it too much thought though. I'd always been anxious and my tummy had always rebelled against me at inopportune moments.
But then it got worse.
In 2002 I travelled to Florida with my best friend and her family. We indulged daily in America's finest gastronomical delights. Everything was either encased in a bun or deep-fried in breadcrumbs - even the vegetables. After an onslaught of indulgence enough to trigger diabetes, I decided to go healthy one evening. My body was screaming for vegetables. I chose the ravioli stuffed with spinach in tomato sauce - I was getting two of my five a day at least. The ravioli was placed in front of me, I kid you not, encased in a golden blanket of deep fried breadcrumbs. I was tucking into gluten fried in gluten. I spent the majority of that holiday either in pain or tears. Anxious, scared, monumentally constipated and looking like I’d swallowed a beach inflatable. That was when the panic attacks really kicked in. I’d had them before but nothing like this. I lay in bed crying, desperate to go home, yet at the same time fearful to leave. There are few things scarier than the feeling of losing touch with reality and your rational mind.
I managed to make it back to the family home I had grown up in. This was soon to be sold as the result of my parents’ divorce a few years previously and this caused me immeasurable amounts of distress - both the break-down of the marriage and the house sale.
The first night back I lay awake, 100% convinced that I was in the throes of a heart attack. At 17 years old my mum had to come and sleep in my room in an attempt to calm me down.
From this point my anxiety reached new heights. I didn't understand it and nor did anyone around me. The obvious solution of course was to visit my G.P. They will wave the magic NHS wand and eliminate a lifetime of fears and tummy woes. On my first visit I described in great detail, what I didn't realise at the time are the classic symptoms of panic attacks alongside the accompanying tummy distress. I left that day with a prescription for stomach ulcer medication. I took these tablets for a few months waiting for a miracle and for it all to go away. Needless to say it never came. Hindsight also tells me that if anything those tablets would have made me worse. But I was desperate so I didn't quit there. The anxiety took me into a depression and my thoughts and feelings became unbearable. The same doctor swapped the stomach ulcer medication for beta-blockers. For those that don't know the side effects of these are anxiety. I took these for a while to no avail as I watched my symptoms spiral out of control.
Over the next 10 years I battled with varying symptoms. Erratic moods, tearfulness, anxiety and panic, bloating, random rashes on my hands, face and legs, dry skin, keratosis pilaris, bad breath, stomach pains, excess fine hair on my face, persistent tiredness and brain fog to name but a few. At 20 years old my friends would call round for me and I would be napping in the middle of the day. Throughout college and university I napped everyday and found it increasingly hard to get out of bed in the mornings. I missed so many lectures because I was constantly tired. I didn’t at this point link any of my symptoms together though and nobody else questioned it either – it just became the norm for me.
Over the course of these 10 years I lost track of the amount of times I visited a GP with one symptom or another, trying to fit the pieces of the puzzle together - And these were multiple GPs at multiple surgeries. I laid out my symptoms time and time again to different faces and not once did anyone even consider my diet. I was pushed from one antidepressant to another and each came with a list of side effects worse than my symptoms. Every time I returned to the doctor showing no signs of improvements they simply upped my dose or changed the brand. At one point one GP prescribed me an intense anti-psychotic drug. Another GP ordered me to come off it instantly and go cold turkey because he felt it was far too potent and had a history of causing strokes. I stopped them immediately and felt totally out of control. I didn’t leave my bed for two days and felt like my mind didn’t even belong to me anymore. I was sent to Counselors and Psychotherapists. I was diagnosed with depression, episodes of psychosis, ibs, ringworm, seasonal affective disorder and at a point where I developed severe dry and flaking skin all over my entire neck, simply told to wash my hair over the bath – not in the shower.
By the end of 2011 I hit rock bottom. I was in a job I hated and a relationship that wasn't working. I started developing new more worrying symptoms on top of the existing ones and I knew whatever was wrong with me was getting worse. Small bruises would appear all over my legs. My brain felt like it was plugged into the mains supply and I couldn’t sleep despite being exhausted. I was up at 3 in the morning wide-awake and drawing or crafting in between feeling either depressed and wiped or manic and wired. My emotions became even more erratic and totally beyond my control, my hair came out in large amounts when I brushed it and I was forever picking it off my clothes, as it just seemed to drop. My skin was dry and cracked. I lost a stone in weight. I stopped sweating – even it intense heat my body was cold to touch. My hands and feet felt like little icebergs. My inner eyelids were pale and my skin was white. I had puffy purple bags under my eyes and a severe sharp shooting pain down my leg and into my calves.
I felt incredibly isolated and very lonely. Nobody was helping and I had been repeatedly failed time and again by the medical system. I decided I needed to take things into my own hands before I fell apart completely. I knew I was well on my way to some kind of physical and emotional meltdown.
After years of applications I managed to land myself a much better job. Everything about it was perfect for me. And I started enjoying going to work with some great people. I then decided to end the relationship I had been in for ten years. Although this was something I needed to do, it undoubtedly contributed to months of additional stress on my body, which was already suffering in various ways. I felt the signs of stress more and more and my symptoms were amplified 24/7.
I then met Paul through work and we started a relationship - I felt finally like my life was starting to improve. But I still felt like two different people. There was the anxious, depressed, stressed and ill body that I had inhabited most of my life battling against me being the happiest I had ever been in a great job and the relationship I’d always wanted.
At this point I was offered a new job role that offered me lots of career progression and it felt like certain areas of my life were falling in to place, but something was still very wrong.
My symptoms appeared to be increasing and worsening and I hit the Internet in search of answers. Focusing on my emotional state I decided I must have a hormone imbalance. I visited my GP and requested a blood test. The GP told me they felt it was unnecessary and although I had all the characteristic symptoms of an imbalance they felt I didn’t need a test. I insisted and the test went ahead. When the results came back they identified borderline hypothyroidism. Now as an anxious person this scared me. A lot. I was convinced something awful was underlying and death was imminent. It did however explain a lot of my symptoms. I decided to Google doctor myself and the more research I did the more I realized there was a strong connection between diet and thyroid health. I discovered a common theme linking gluten to thyroid disease and I felt like I’d hit the jackpot. I stumbled across story after story of those whose symptoms mirrored mine. I decided to start cutting down on gluten, just having the odd bit here and there. After all I suspected Gluten intolerance – it couldn’t possibly be as severe as coeliac disease surely? Confidently armed with my newfound knowledge I headed back to the GP for the 9.8 millionth time. I sat down, beaming, knowing I’d finally nailed this and announced ‘I think I may have coeliac disease’ The GP proceeded to stare at me for what felt like a lifetime. He then silently took his stethoscope and placed it on my tummy and listened. He then asked me to lie down whilst he prodded various points in my stomach and listened to the sounds it made.
Finally! A Diagnosis was about to be made – 12 years in the making.
And here it came….
‘Your stomach does not gurgle like it would if you were a coeliac. I think this is mostly psychological. I’m going to refer you to our counseling team so you can talk to someone’
Wow. Not only had my condition been missed yet again by the 12th GP in as many years, but I left that day questioning my own mental health and sanity.
I woke constantly that night. I looked in the bathroom mirror and I didn’t even recognize myself anymore. My face looked gaunt, pale, the black bags under my eyes bulged and the two sides of my parting looked as if they’d had a fall out, as they got further apart due to hair loss. I called in sick the next day. I didn’t even know what to do anymore. The counselor rang and asked me a series of questions including ‘how often do you contemplate suicide on a daily basis’. I sat on the bathroom floor answering her questions and fighting back tears. Every fibre of my being told me I wasn’t truly depressed – that there was something else going on. Underneath the struggles I always had a passion for life and a desire to make the most of my time and experiences, but it felt that that person was just trapped underneath a layer of something else that just needed shifting. I just didn’t know what that something was. Yet sat on the bathroom floor, after 12 years of fighting the NHS, I did have to seriously consider if I was in fact crazy.
The anxiety continued to grow. I began to dwell more and more on every symptom and sensation and began to panic about my thyroid.
I went back to the GP and insisted I was referred to a specialist to discuss my thyroid. He made the referral and I paid to see an endocrinologist privately. He talked me through my thyroid symptoms and assured me I wasn’t going to drop dead – not anytime soon anyway. I decided as a crazy person I had nothing to lose, so I broached the subject one more time and asked him if he thought I could have coeliac disease.
I sat there waiting for the next knockback and was surprised to hear him say that it was not uncommon to have thyroid conditions as a result of coeliac disease. He asked me to describe my symptoms and with that he wrote a recommendation to my GP to have me checked for coeliac disease. It had taken me almost 13 years (which I now know to be the average time for a coeliac diagnosis in the UK. It takes 6 weeks in Italy) and to pay £90 for a private appointment to get tested for coeliac disease. At this point I had stopped eating gluten and felt notably better. Despite the recommendation to maintain gluten in my diet, I removed it entirely and had the bloods done regardless.
About a week later I received a phone call. My bloods were back and they were showing elevated antibodies in response to gluten. I asked the GP if this meant I had coeliac disease. He couldn’t tell me. He said it indicated that there was a possibility that I may have coeliac disease but he wasn’t sure this was the case. He asked me to go to the surgery to discuss the results. As it goes I went in and saw yet another GP who couldn’t find my results and claimed no knowledge of me even taking the test – but that’s another NHS failure story for another day. So, I went back AGAIN to see someone else. It was all incredibly vague and sketchy. I didn’t get a great deal of information or a diagnosis, but it was recommended that I have an endoscopy to confirm whether or not I had the disease. Obviously after 13 years of being pushed from pillar to post by the NHS I had developed quite an impressive medical phobia and nothing was going to convince me that having the endoscopy at my local NHS hospital was a good idea. I opted to been seen privately so I could experience some level of comfort at least and ease my fears.
I had read and been informed repeatedly that I needed to consume gluten for 6 weeks in the lead up to my endoscopy. This literally made no sense to me. Firstly I felt a million times better without it. Secondly, if the response to eating the most miniscule amount of gluten is to set off an autoimmune response in coeliacs why did I need to eat 6 weeks’ worth of it? Thirdly, if it takes an average 2 years to heal coeliac damage, surely my system had seen enough abuse over the last 13 years for it to be visible without me needing to aggravate it further?
I expressed my concerns to my consultant about being asked to myself ill for 6 weeks. When you’ve had symptoms for most of your life and then uncover the cause, you are unlikely to want to continue to expose yourself to it. We agreed that I could eat it for just one week leading up to the test. Even then I was cautious. I wasn’t prepared to do this every day or at every meal. I was facing a medical procedure and didn’t fancy literally feeding my anxiety. The first night I had a pizza and was asleep 30 minutes later. Throughout the week I had a bit of bread and some pasta. As the week progressed, so did my symptoms. By the time the morning of the test came around I was bloated as hell, exhausted and constipated. Big time.
I had very mixed emotions that day. I had ultimately been consuming less gluten over the last few months so my anxiety had eased somewhat. Although I felt nerves and hospital fear, I felt excited and eager for a diagnosis. The hospital was lovely – it felt more like a hotel stay than a medical institution. I waited to go down to the procedure with very few nerves. This was HUGE for me and confirmation of how much gluten had contributed to my anxiety over the years. In fact, I would now put diet as the root cause from which 90% of my anxiety stems. 5 years prior to this moment I was having panic attacks just sitting in a GP waiting room. If I’d been told at that point I’d need a procedure in hospital I would have flatly refused and started hyperventilating at the very thought.
The time came and I was taken down to the procedure room; which from what I can remember was the size of a broom cupboard and contained 5 different medical staff wedged into various crevices. One of the consultants talked me through the procedure and as the cannula went in, the anxiety made an appearance. But hey, I’m amazed I made it that far. The panic started to build in intensity for all of 5 seconds before I slipped into blissful, oblivious sedation. I remember nothing of what followed and woke up an hour later back in my hotel style room with Paul by my side and a gluten free smoked salmon sandwich.
A week late I returned eagerly and with excitement for my results. My consultant informed me that yes, I did have coeliac disease. I felt flooded with happiness and relief. Probably not the standard response when diagnosed with a disease. She informed me that it was a nice and easy condition to treat and told me to avoid all sources of gluten from wheat, barley, rye and oats. She told me to go home and ditch all my kitchen utensils and chopping boards, scrub the place from top to bottom and start again. She stressed the importance of cross contamination and how the tiniest speck of flour is enough to trigger a response. She handed me a leaflet advertising a local café that sold gluten free cakes and that was it. 13 years of waiting and it was confirmed in 10 minutes, complete with a recommendation for alternative sweet treats. Since she hadn’t mentioned it herself I thought it prudent to ask how much damage had been done to my digestion, given the length of time I had been suffering. ‘Quite considerable’ she said. But assured me I would start to recover at some point in the next 6 months to 2 years. It pains me to think how much less considerable the damage would have been if this had been picked up when I first presented symptoms. But equally I cannot help but think how much worse it would have got if I had not relentlessly pushed for tests.
And from here my healing journey began and I would like to share it with you. My coeliac diagnosis really is only the tip of the iceberg. Its taken years of research and experimentation to get me to the stage I am at today. I honestly hand on heart know that there is so much more to recovery than simply omitting gluten from your diet. Especially if like the majority of coeliacs it has taken 10 years + to be diagnosed – the damage done in that time needs a lot of love to be reversed. In the UK, I personally believe that our standard medical establishment is ill equipped to deal with chronic disease and most definitely clueless when it comes to dietary choices and their implication on health. This is to be expected when you look at the amount of training GP’s and doctors get in nutrition. To say it is minimal would be an understatement. When you consider that your body thrives of fails based upon its nutritional status, it’s beyond me why dietary education does not underpin the foundations of medical or even school learning. This is fundamental life knowledge that we all need to be aware of. If you think you have coeliac disease or gluten intolerance I urge you to get tested. If you are at least armed with knowing whether you are or not, you can then build your own healing journey. There are countless resources available to support you based on solid research and just good old fashioned common sense, and I hope to share those that have proved invaluable to me.
I hope that sharing my experiences will give others hope and encouragement on their own journeys, and help you to embrace the happy healthy life that follows a diagnosis.
DISCLAIMER: The information on this blog is purely based on my own thoughts, views and opinions. I am telling these stories to share my experiences with you. The information does not constitute medical advice of any kind and is not intended to substitute the advice of a medical professional. You should consult with a registered GP for guidance on any health related issues and not make any medical decisions based on the information contained within this site. I have no medical training, I am quite simply a coeliac with a story to share.
In fact I can rewind back another 10 years at least to see when the descent into this resultant mess really began. Throughout my childhood and teenage years I suppose I never felt quite right. A tummy ache here, a lot of gas there, a constant and relentless stream of nerves and anxiety that dictated my every move, and reduced me to tears at the slightest upset. When the 2000's came around I enviously watched as my friends flaunted their midriffs a la Britney Spears. I wondered why their stomachs were flat and toned but I looked like I was in my third trimester after devouring my first pop tart of the day. Going out became an anxious affair. My friends drank and danced in skimpy dresses while I found ways to conceal my bloated tummy. Thick denim skirts became my closest allies. I didn't give it too much thought though. I'd always been anxious and my tummy had always rebelled against me at inopportune moments.
But then it got worse.
In 2002 I travelled to Florida with my best friend and her family. We indulged daily in America's finest gastronomical delights. Everything was either encased in a bun or deep-fried in breadcrumbs - even the vegetables. After an onslaught of indulgence enough to trigger diabetes, I decided to go healthy one evening. My body was screaming for vegetables. I chose the ravioli stuffed with spinach in tomato sauce - I was getting two of my five a day at least. The ravioli was placed in front of me, I kid you not, encased in a golden blanket of deep fried breadcrumbs. I was tucking into gluten fried in gluten. I spent the majority of that holiday either in pain or tears. Anxious, scared, monumentally constipated and looking like I’d swallowed a beach inflatable. That was when the panic attacks really kicked in. I’d had them before but nothing like this. I lay in bed crying, desperate to go home, yet at the same time fearful to leave. There are few things scarier than the feeling of losing touch with reality and your rational mind.
I managed to make it back to the family home I had grown up in. This was soon to be sold as the result of my parents’ divorce a few years previously and this caused me immeasurable amounts of distress - both the break-down of the marriage and the house sale.
The first night back I lay awake, 100% convinced that I was in the throes of a heart attack. At 17 years old my mum had to come and sleep in my room in an attempt to calm me down.
From this point my anxiety reached new heights. I didn't understand it and nor did anyone around me. The obvious solution of course was to visit my G.P. They will wave the magic NHS wand and eliminate a lifetime of fears and tummy woes. On my first visit I described in great detail, what I didn't realise at the time are the classic symptoms of panic attacks alongside the accompanying tummy distress. I left that day with a prescription for stomach ulcer medication. I took these tablets for a few months waiting for a miracle and for it all to go away. Needless to say it never came. Hindsight also tells me that if anything those tablets would have made me worse. But I was desperate so I didn't quit there. The anxiety took me into a depression and my thoughts and feelings became unbearable. The same doctor swapped the stomach ulcer medication for beta-blockers. For those that don't know the side effects of these are anxiety. I took these for a while to no avail as I watched my symptoms spiral out of control.
Over the next 10 years I battled with varying symptoms. Erratic moods, tearfulness, anxiety and panic, bloating, random rashes on my hands, face and legs, dry skin, keratosis pilaris, bad breath, stomach pains, excess fine hair on my face, persistent tiredness and brain fog to name but a few. At 20 years old my friends would call round for me and I would be napping in the middle of the day. Throughout college and university I napped everyday and found it increasingly hard to get out of bed in the mornings. I missed so many lectures because I was constantly tired. I didn’t at this point link any of my symptoms together though and nobody else questioned it either – it just became the norm for me.
Over the course of these 10 years I lost track of the amount of times I visited a GP with one symptom or another, trying to fit the pieces of the puzzle together - And these were multiple GPs at multiple surgeries. I laid out my symptoms time and time again to different faces and not once did anyone even consider my diet. I was pushed from one antidepressant to another and each came with a list of side effects worse than my symptoms. Every time I returned to the doctor showing no signs of improvements they simply upped my dose or changed the brand. At one point one GP prescribed me an intense anti-psychotic drug. Another GP ordered me to come off it instantly and go cold turkey because he felt it was far too potent and had a history of causing strokes. I stopped them immediately and felt totally out of control. I didn’t leave my bed for two days and felt like my mind didn’t even belong to me anymore. I was sent to Counselors and Psychotherapists. I was diagnosed with depression, episodes of psychosis, ibs, ringworm, seasonal affective disorder and at a point where I developed severe dry and flaking skin all over my entire neck, simply told to wash my hair over the bath – not in the shower.
By the end of 2011 I hit rock bottom. I was in a job I hated and a relationship that wasn't working. I started developing new more worrying symptoms on top of the existing ones and I knew whatever was wrong with me was getting worse. Small bruises would appear all over my legs. My brain felt like it was plugged into the mains supply and I couldn’t sleep despite being exhausted. I was up at 3 in the morning wide-awake and drawing or crafting in between feeling either depressed and wiped or manic and wired. My emotions became even more erratic and totally beyond my control, my hair came out in large amounts when I brushed it and I was forever picking it off my clothes, as it just seemed to drop. My skin was dry and cracked. I lost a stone in weight. I stopped sweating – even it intense heat my body was cold to touch. My hands and feet felt like little icebergs. My inner eyelids were pale and my skin was white. I had puffy purple bags under my eyes and a severe sharp shooting pain down my leg and into my calves.
I felt incredibly isolated and very lonely. Nobody was helping and I had been repeatedly failed time and again by the medical system. I decided I needed to take things into my own hands before I fell apart completely. I knew I was well on my way to some kind of physical and emotional meltdown.
After years of applications I managed to land myself a much better job. Everything about it was perfect for me. And I started enjoying going to work with some great people. I then decided to end the relationship I had been in for ten years. Although this was something I needed to do, it undoubtedly contributed to months of additional stress on my body, which was already suffering in various ways. I felt the signs of stress more and more and my symptoms were amplified 24/7.
I then met Paul through work and we started a relationship - I felt finally like my life was starting to improve. But I still felt like two different people. There was the anxious, depressed, stressed and ill body that I had inhabited most of my life battling against me being the happiest I had ever been in a great job and the relationship I’d always wanted.
At this point I was offered a new job role that offered me lots of career progression and it felt like certain areas of my life were falling in to place, but something was still very wrong.
My symptoms appeared to be increasing and worsening and I hit the Internet in search of answers. Focusing on my emotional state I decided I must have a hormone imbalance. I visited my GP and requested a blood test. The GP told me they felt it was unnecessary and although I had all the characteristic symptoms of an imbalance they felt I didn’t need a test. I insisted and the test went ahead. When the results came back they identified borderline hypothyroidism. Now as an anxious person this scared me. A lot. I was convinced something awful was underlying and death was imminent. It did however explain a lot of my symptoms. I decided to Google doctor myself and the more research I did the more I realized there was a strong connection between diet and thyroid health. I discovered a common theme linking gluten to thyroid disease and I felt like I’d hit the jackpot. I stumbled across story after story of those whose symptoms mirrored mine. I decided to start cutting down on gluten, just having the odd bit here and there. After all I suspected Gluten intolerance – it couldn’t possibly be as severe as coeliac disease surely? Confidently armed with my newfound knowledge I headed back to the GP for the 9.8 millionth time. I sat down, beaming, knowing I’d finally nailed this and announced ‘I think I may have coeliac disease’ The GP proceeded to stare at me for what felt like a lifetime. He then silently took his stethoscope and placed it on my tummy and listened. He then asked me to lie down whilst he prodded various points in my stomach and listened to the sounds it made.
Finally! A Diagnosis was about to be made – 12 years in the making.
And here it came….
‘Your stomach does not gurgle like it would if you were a coeliac. I think this is mostly psychological. I’m going to refer you to our counseling team so you can talk to someone’
Wow. Not only had my condition been missed yet again by the 12th GP in as many years, but I left that day questioning my own mental health and sanity.
I woke constantly that night. I looked in the bathroom mirror and I didn’t even recognize myself anymore. My face looked gaunt, pale, the black bags under my eyes bulged and the two sides of my parting looked as if they’d had a fall out, as they got further apart due to hair loss. I called in sick the next day. I didn’t even know what to do anymore. The counselor rang and asked me a series of questions including ‘how often do you contemplate suicide on a daily basis’. I sat on the bathroom floor answering her questions and fighting back tears. Every fibre of my being told me I wasn’t truly depressed – that there was something else going on. Underneath the struggles I always had a passion for life and a desire to make the most of my time and experiences, but it felt that that person was just trapped underneath a layer of something else that just needed shifting. I just didn’t know what that something was. Yet sat on the bathroom floor, after 12 years of fighting the NHS, I did have to seriously consider if I was in fact crazy.
The anxiety continued to grow. I began to dwell more and more on every symptom and sensation and began to panic about my thyroid.
I went back to the GP and insisted I was referred to a specialist to discuss my thyroid. He made the referral and I paid to see an endocrinologist privately. He talked me through my thyroid symptoms and assured me I wasn’t going to drop dead – not anytime soon anyway. I decided as a crazy person I had nothing to lose, so I broached the subject one more time and asked him if he thought I could have coeliac disease.
I sat there waiting for the next knockback and was surprised to hear him say that it was not uncommon to have thyroid conditions as a result of coeliac disease. He asked me to describe my symptoms and with that he wrote a recommendation to my GP to have me checked for coeliac disease. It had taken me almost 13 years (which I now know to be the average time for a coeliac diagnosis in the UK. It takes 6 weeks in Italy) and to pay £90 for a private appointment to get tested for coeliac disease. At this point I had stopped eating gluten and felt notably better. Despite the recommendation to maintain gluten in my diet, I removed it entirely and had the bloods done regardless.
About a week later I received a phone call. My bloods were back and they were showing elevated antibodies in response to gluten. I asked the GP if this meant I had coeliac disease. He couldn’t tell me. He said it indicated that there was a possibility that I may have coeliac disease but he wasn’t sure this was the case. He asked me to go to the surgery to discuss the results. As it goes I went in and saw yet another GP who couldn’t find my results and claimed no knowledge of me even taking the test – but that’s another NHS failure story for another day. So, I went back AGAIN to see someone else. It was all incredibly vague and sketchy. I didn’t get a great deal of information or a diagnosis, but it was recommended that I have an endoscopy to confirm whether or not I had the disease. Obviously after 13 years of being pushed from pillar to post by the NHS I had developed quite an impressive medical phobia and nothing was going to convince me that having the endoscopy at my local NHS hospital was a good idea. I opted to been seen privately so I could experience some level of comfort at least and ease my fears.
I had read and been informed repeatedly that I needed to consume gluten for 6 weeks in the lead up to my endoscopy. This literally made no sense to me. Firstly I felt a million times better without it. Secondly, if the response to eating the most miniscule amount of gluten is to set off an autoimmune response in coeliacs why did I need to eat 6 weeks’ worth of it? Thirdly, if it takes an average 2 years to heal coeliac damage, surely my system had seen enough abuse over the last 13 years for it to be visible without me needing to aggravate it further?
I expressed my concerns to my consultant about being asked to myself ill for 6 weeks. When you’ve had symptoms for most of your life and then uncover the cause, you are unlikely to want to continue to expose yourself to it. We agreed that I could eat it for just one week leading up to the test. Even then I was cautious. I wasn’t prepared to do this every day or at every meal. I was facing a medical procedure and didn’t fancy literally feeding my anxiety. The first night I had a pizza and was asleep 30 minutes later. Throughout the week I had a bit of bread and some pasta. As the week progressed, so did my symptoms. By the time the morning of the test came around I was bloated as hell, exhausted and constipated. Big time.
I had very mixed emotions that day. I had ultimately been consuming less gluten over the last few months so my anxiety had eased somewhat. Although I felt nerves and hospital fear, I felt excited and eager for a diagnosis. The hospital was lovely – it felt more like a hotel stay than a medical institution. I waited to go down to the procedure with very few nerves. This was HUGE for me and confirmation of how much gluten had contributed to my anxiety over the years. In fact, I would now put diet as the root cause from which 90% of my anxiety stems. 5 years prior to this moment I was having panic attacks just sitting in a GP waiting room. If I’d been told at that point I’d need a procedure in hospital I would have flatly refused and started hyperventilating at the very thought.
The time came and I was taken down to the procedure room; which from what I can remember was the size of a broom cupboard and contained 5 different medical staff wedged into various crevices. One of the consultants talked me through the procedure and as the cannula went in, the anxiety made an appearance. But hey, I’m amazed I made it that far. The panic started to build in intensity for all of 5 seconds before I slipped into blissful, oblivious sedation. I remember nothing of what followed and woke up an hour later back in my hotel style room with Paul by my side and a gluten free smoked salmon sandwich.
A week late I returned eagerly and with excitement for my results. My consultant informed me that yes, I did have coeliac disease. I felt flooded with happiness and relief. Probably not the standard response when diagnosed with a disease. She informed me that it was a nice and easy condition to treat and told me to avoid all sources of gluten from wheat, barley, rye and oats. She told me to go home and ditch all my kitchen utensils and chopping boards, scrub the place from top to bottom and start again. She stressed the importance of cross contamination and how the tiniest speck of flour is enough to trigger a response. She handed me a leaflet advertising a local café that sold gluten free cakes and that was it. 13 years of waiting and it was confirmed in 10 minutes, complete with a recommendation for alternative sweet treats. Since she hadn’t mentioned it herself I thought it prudent to ask how much damage had been done to my digestion, given the length of time I had been suffering. ‘Quite considerable’ she said. But assured me I would start to recover at some point in the next 6 months to 2 years. It pains me to think how much less considerable the damage would have been if this had been picked up when I first presented symptoms. But equally I cannot help but think how much worse it would have got if I had not relentlessly pushed for tests.
And from here my healing journey began and I would like to share it with you. My coeliac diagnosis really is only the tip of the iceberg. Its taken years of research and experimentation to get me to the stage I am at today. I honestly hand on heart know that there is so much more to recovery than simply omitting gluten from your diet. Especially if like the majority of coeliacs it has taken 10 years + to be diagnosed – the damage done in that time needs a lot of love to be reversed. In the UK, I personally believe that our standard medical establishment is ill equipped to deal with chronic disease and most definitely clueless when it comes to dietary choices and their implication on health. This is to be expected when you look at the amount of training GP’s and doctors get in nutrition. To say it is minimal would be an understatement. When you consider that your body thrives of fails based upon its nutritional status, it’s beyond me why dietary education does not underpin the foundations of medical or even school learning. This is fundamental life knowledge that we all need to be aware of. If you think you have coeliac disease or gluten intolerance I urge you to get tested. If you are at least armed with knowing whether you are or not, you can then build your own healing journey. There are countless resources available to support you based on solid research and just good old fashioned common sense, and I hope to share those that have proved invaluable to me.
I hope that sharing my experiences will give others hope and encouragement on their own journeys, and help you to embrace the happy healthy life that follows a diagnosis.
DISCLAIMER: The information on this blog is purely based on my own thoughts, views and opinions. I am telling these stories to share my experiences with you. The information does not constitute medical advice of any kind and is not intended to substitute the advice of a medical professional. You should consult with a registered GP for guidance on any health related issues and not make any medical decisions based on the information contained within this site. I have no medical training, I am quite simply a coeliac with a story to share.
