Disclaimer: Just briefly I want to write a little disclaimer because I have self diagnosed myself with a gluten intolerance. I know that self diagnosis can be dangerous so I want to put it out there and tell you to take my story with a pinch of salt. If you are not well you should always go to a doctor first. You will soon see why I decided to go gluten free on my own, after many failed doctor visits. I am not discrediting doctors at all, I just believe that if they do not help and you are suffering, that you should recognise that you are responsible for your own health and you do not have to victimise yourself or put the ball in their court.
This is going to be a very long story but I am compelled to share it to explain why I have made the decision to become gluten free but also to help others who may need it…
For most of my life I have had something wrong with my body. I had stomach aches growing up – in the cinema, at a friends house and at night are a few occasions that I recall. I assumed that I was just someone who suffered with them. I also had a lot of headaches as a teenager and felt tired a lot. I just had many different things wrong with me that seemed to be all separate from each other and over the years they got increasingly worse. This year I have discovered that they were all caused by gluten.
A couple of years prior to moving out, when I first started college, I started getting sick. I would go to college and barely eat anything until at least 3pm , because I just felt this gnarly sick feeling in my stomach. A couple of months later, I was sat on the chair in a ball on Christmas Day, refusing to eat Christmas dinner. I was eighteen at the time but it had taken a couple of months for me to tell my mother, who told me I needed to get to the doctors as it sounded like an acid issue. I was diagnosed with acid reflux and was given PPIs to treat it, drugs that I would take for a few more years. Despite taking these drugs I still had issues. I also found out that ibuprofen was a potential cause of acid reflux and I was suffering from chronic headaches and ibuprofen were the only drugs that helped. I had experienced regular stomach aches from a very young age and since moving out I had more stomach upsets than was normal.
Also at college, I became anxious over why I felt so weak and out of breath a lot and discovered that I had an iron deficiency. I started to feel more aware of my body at this time. In fact, I started to believe that I had had this issue for years but I believed it was just normal to feel that way. I was put on iron tablets that really upset my stomach but I felt like I had to put up with them.
As I mentioned earlier, I suffered from chronic headaches. I remember having my first one when I was about 12 and being given half an ibuprofen to help. I was crying over it. From about the age of 16, I began to get headaches regularly and it was extremely rare for me to go a week without having one or two and even then that was a good week. I went to see a doctor about this issue and she asked me if I paid for prescriptions, to which I answered no, then gave me a prescription for 100 co-codamol tablets. After taking one when I next had a headache, it remained and with it came nausea, drowsiness and I felt very groggy. It was not nice, although I soon developed migraines to which I took them as they were the only thing that helped. I would rather feel like that with lessened pain and fall asleep easily than suffer the symptoms of one of those attacks. Again, I thought I was just someone who suffered with many headaches and occasional migraines.
I left college and started straight away in a full time job. However, it was more than full time. I was overworked and could never catch up on sleep. A 50-60 hour week in four days was becoming the norm and my mind and body struggled. That is when my menstrual cycle started to mess up big time and I experienced a lot of brain fog, dizziness, exhaustion and anxiety. Back I went to the doctors for more iron tablets and I took a few days off work to recover. I went back feeling a little better, but I was very aware that redundancy was looming and the place I worked would soon be closing down.
I moved into a house share after my roommate moved out and I was becoming jobless anyway so I really needed an affordable place to live. I began having a lot more more anxiety soon after moving and I sought help from the NHS, which did not help an awful lot. I was probably suffering from adrenal fatigue or something similar too and my acid reflux was still a problem and all of these symptoms worried me and gave me anxiety. I would often wake up in the night and take Gaviscon in order to be able to go back to sleep. I used to worry what these drugs were doing to my body. I went back to the doctors and agreed to have a gastroscopy, which meant that a camera was to be inserted down my throat and into my stomach to see what was going on in there. As nervous as it made me, I felt it was time. My heart was pounding as the nurse gave me the throat spray and a sedative and then immediately afterwards they begun to insert the tube. I had imagined that the sedative would relax me but I assume the adrenaline was too much and it did not make me feel drowsy or calm until later on. I panicked and apparently, although I do not remember this as the sedative did make me feel drunk, I pulled the tube out. They offered me to go back but I said no. I felt relieved. I decided to come off the medication permanently and try and fix the issue myself. I tried many different things but changing my diet to a healthier one with less of the foods that triggered me helped the most. I also bought a wedge pillow to sleep on at night so I am elevated and it worked as I rarely wake up with acid reflux now. At the time, I was still experiencing it quite often but I had heard of the long term effects of PPIs and I did not want any more medical intervention.
My health got a lot worse when my menstrual cycle became increasingly insufferable. I had never felt pain as severe in my entire life and I had to deal with migraines, which were awful. My cycle started to become irregular and shorter, occurring every three weeks at times, but no more than four weeks. The pain was so severe that pain medication barely touched it. I could not stand up straight for up to two days. At first, I believed it was entirely due to stress. It felt as if the pain was inside my bowels and something was tearing my insides up. The bloating, soreness and fatigue that followed after an episode was bad too but I still made myself go into work on these days – I had a new job by then. Sometimes I was lucky and got it on my weekend and on others, I would have no choice but to phone in sick or get to do a job sitting down, which there were few. The pain was sometimes constant and sometimes it came in waves. When the latter happened I curled myself in a tense ball, unable to move or speak and I had to really force myself to breathe. When it lessened I would reach for the remote control and put something light hearted on the TV to try and take my mind off it. Hot water bottles and F.R.I.E.N.D.S became a source of comfort for me. Every month I would head off to see a doctor or nurse. I was getting so fed up with this and I felt like I was not being listened to. I wanted scans not drugs. I wanted to get to the root cause of what I believed was endometriosis, even though I was terrified that I would need to be operated on. I was more terrified that I would have to spend my life in this condition. The doctor gave me special anti-inflammatory drugs that reduced clotting, despite me saying I could not take them due to acid reflux. Still, I tried and they did indeed fail me and made my stomach upset for days. I was constantly being told to take the contraceptive pill and each time I refused because I had experienced bad side effects on it. Eventually, as the pain became worse and my tolerance for it became less, I reluctantly agreed to take one that did not contain any oestrogen. Although the pain decreased after several different ones, the other effects were evident and I was becoming further and further detached from who I was. I started to feel like a different person. I found it incredibly hard to feel happy and I never once experienced excitement for over a year. It was as if I was not able to on it. After a year or so, I had enough and stopped my prescription. A few weeks of dreaded hormonal changes occurred but almost instantly I began to feel more clarity and I felt like me again.
Whilst all of this was happening, I was also suffering with bladder issues. Daily pain and discomfort happened for years. Chronic cystitis is something that I believed that I had, but yet again I was not diagnosed with anything. Every time it got bad and I had a flare up, as I called it, I went to the doctors who tested me for a UTI, which came back negative in the office. So they would send me away with a prescription for antibiotics, which gave me more stomach complaints. They would send my urine off to be cultured, which always came back negative or inconclusive – having too many large particles or blood in it. Every time I went the same thing happened until eventually I did not want to take antibiotics as I was sure it was not an infection. So I was naughty and did not take them this one time and guess what? The symptoms reduced on their own. The doctors did not want to do any tests claiming that I was just suffering from UTIs and I stopped going to them about that issue and started researching for myself.
I was still experiencing random stomach issues. One day I woke up in the night in the most severe stomach pain. It was the worst pain that I had ever felt. My body started to sweat profusely and I could not stay still or cool down so I went outside. It was winter thankfully. I took some Gaviscon to see if it would help but threw them up. It felt as if my stomach lining was inflamed and something was just not right. I got Carl to drive me to the hospital but once I arrived I felt the pain lessen. We sat outside in the car in the early hours of the morning to see if it would go down. As I was feeling signs of it improving, I got him to drive me home. I had been in A&E before and if I was going to feel better on my own I did not want to experience that again. The next day my stomach was so sore and I made a doctor’s appointment. Again, I received a course of PPIs, which I took despite thinking that I had just a freak episode. However, I knew in my gut (no pun intended) that something was just not right with me.
My symptoms were piling up and I was worried that they were just going to get worse. I remember going around IKEA on my birthday one year and being in a tremendous amount of pain but it was my birthday and my partner was going to buy me some drawers that I wanted and so off we went! Every single bump on the road was uncomfortable and once we arrived, I spent the whole time bent over, walking like someone in labour. Once we got home, I bathed and spent the rest of the day and the next day in bed, with a hot water bottle. I was so incredibly sore and gutted that this was what my life was coming to. The day before, Carl and I had gone to visit, and eat dinner, with two of my closest friends who lived away for university. We ate at Zizzis and I had a pizza. I remember my stomach not feeling to great afterwards but it was not terrible at the time. That day, after visiting IKEA, I started to wonder if there was a connection between my diet and the pain of menstruation. I researched and found out that meat, dairy and gluten can be a cause of inflammation. I rarely ate meat anyway so going vegetarian was a simple decision. I had always hated the meat industry but it took something like this for me to look into it more. A few months later of doing research into whether it would benefit my health and finding out a lot about how cruel the dairy and egg industries were, I decided to go vegan.
A few months in of taking the pill and being vegan I was feeling better and decided to quit the pill to see if I still needed to take it for the pain. The first month in, I experienced less pain, but it was still there and it still was not nice. I had started doing yoga to help with the stress I was feeling and I also started to look more into a gluten free diet. I found out that many people who had endometriosis had decreased symptoms when they took on this diet. I decided to at least try it. After a few days I felt better in myself. The bowel and period pain that I had suffered with disappeared. I could not believe it. However, I was still consuming some gluten – a few cakes now and again and sometimes some bread. I was not being strict. I was still experiencing acid reflux and a few other symptoms. I read up on elimination diets and I knew I had to give gluten up completely and then reintroduce it in order to see if I was intolerant/sensitive to it, especially as I thought maybe there was another reason why I was feeling better, such as stress management. Although, I think that the decrease in symptoms really allowed me to feel stressed less. In the weeks to come I felt a lot better and I found out that there was a possibility that I had Coeliac Disease. I did some research into this and found out that I had experienced a lot of the symptoms which had gone away once I stopped consuming gluten. I had these ulcers on the bottom of my tongue that flared up every month and stayed for days and the headaches, migraines, dizziness, brain fog, anxiety, tiredness, iron deficiencies, stomach issues, bladder issues, menstruation issues and more were all possible symptoms. Gluten can also cause these issues if you are sensitive to it (non-coeliac gluten sensitivity – something many people do not think exists). I was feeling ill less and less and I wanted to be tested to see if I had this condition, as it requires you to be very diligent because gluten is very harmful if you suffer from the disease. I looked into getting tested for , however, first you need to be consuming gluten regularly for several weeks and then you need to have a blood test to see if you have certain antibodies in your blood and if you do then you have a 10% (I think) chance of having the disease so then you need to have a biopsy which is done via a gastroscopy (eek).
I tried incorporating gluten back into my diet after a few weeks of not eating much of it and I became ill again. I ended up taking a day off work. I just felt like I could not do it anymore. So I gave it up completely, not realising that I still was not being as diligent as I could be – traces and contamination were potential issues. For a couple of months I thought about reintroducing it again because I did not want to tell people without having an official diagnosis. I tried to reintroduce it again but the same thing happened. I had to face the fact that I was gluten intolerant. I knew my body and I knew what it had been through. I did not want to be sick again and I read that once you have given it up for a few months, you can in fact become increasingly sensitive to it, so I just cannot take that risk. I also did not want it to take over the amazing quality of life that I have recently been experiencing. I have time for other interests now that my health is not taking over my life. I do not want to take any more days off work because of it either – the days I took off with stomach issues, feeling incredibly sick, migraines, bladder ‘infections’ and even dizziness could all have been prevented. Rarely did I have a day off because I had a virus, it was usually something else. I also do not want to spend any more days at work feeling ill, pretending that I am okay, as I do not like the attention, wishing to be home. I am done. I am gluten free for good and I will not look back anymore. I want to take care of my health and allowing myself to heal is all that matters now.
If you are sick, your body is trying to tell you something. Do not ignore it and seek help and if that does not help, do your own research. It does not make you a hypochondriac if you Google your symptoms. I was doing this weekly. You are responsible for your own health. I am going to the doctors to discuss my discovery, in case you were wondering, but I will not be having any tests as I do not want to damage my body anymore.