My Story

The Beginning

When I try to look at when it all started, I can go back to as early as being 8 or 9. I had a lack of enamel on my teeth, which is apparently typical of coeliac disease. I alsohad a permanent cough which is now believed to be the beginning of asthma but other than that, I was a healthy child and did lots of sport and enjoyed life. Somewhere around the age of 17, 'things' started. Bouts of tiredness, hyperventilation, anemia, irregular periods and thrush, migraines, hayfever, asthma, constipation. I ticked along with the odd visit to the doctor and a prescription for iron tablets and was told that "that's just how you are". Time passed, I moved to France and married my husband, and other symtoms slowly crept in. I now had "hayfever" that was all the year round?? and the asthma and migraines were getting worse. I even started to have muscle twitching and spasms and was sent to be tested for Multiple Sclerosis and a few other similar illnesses but was told I was fine and that it must be stress. 

I then had my first baby - who is now a budding teenager - and have suffered from hemorrhoids ever since (thanks sweetheart!). A year later I became pregnant yet again but miscarried this time for no apparent reason. To be honest, due to my extremely irregular periods I was pretty convinced that I would never have children so was surprised that I became pregnant at all. Having a first child brings the stress and sleepless nights so any symptom is put down to being a new mother.

Two months after the miscarriage, I had a viral meningitus. I had recently been bitten by a tick so was tested for Lyme's disease but it also came back negative but was prescribed three weeks of antibiotics just to be sure. I slowly recuperated from this and became pregnant with a beautiful daughter. With hindsight, I probably didn't recuperate enough before trying for another baby but we don't always reason intelligently when it concerns babies... The pregnancy went relatively well and I didn't feel too bad and many of the sypmtoms seemed to disappear. When she arrived, she was an angel, sleeping all night from day two so I managed to recuperate quite well. I also stayed off work with her and often had an afternoon nap to recuperate. Symptoms started to creep back in and I started having dizzy spells and panic attacks, pains in my chest and extremely embarrassing intestinal problems (won't go into details here for the faint-hearted) which led to my first coloscopy and was given the diagnosis of with recto-colitus. Looking back now someone somewhere should have already started to pick up on things but as is so often the case, each symptom is treated on its own and you aren't looked at as a whole. The specialist who dealt with me said that the colitus was probably due an allergy and left it at that without ever going down that road. Why??? If he had, perhaps I wouldn't be where I am today!

I seemed to recover from the colitus but was still plagued with constipation (plus the odd bout of the runs) and hemorrhoids that were horrendous but a few years later I had my third (and final!) child. The pregnancy was wonderful, as was the birth but I think it was the final straw for my body which just seemed to give in.

The Fall

I think that was when the tiredness finally got a grip. Not just the tiredness because you've slept badly or had a busy day. It's a tiredness that starts when you wake up. You find it difficult to get your feet out of bed and stand up. A tiredness that means you have to fully concentrate all your energy just to get dressed. You function by doing one activity after the other. Hoovering suddenly feels like you have run a marathon. You're happy at the end of the day (or you would be if you had enough energy to be) if all the kids are washed and fed. You stop living and feeling and you just exist. There are times when you feel like you are having an outer-body experience as you watch yourself doing things but don't feel anything. You drag yourself through one day at a time. When I look back at that precious time you spend with the children when they are small and know what I missed out on doing with them, it does bother me even if I know there was nothing I could do about it. Sometimes talking even became too much (and anyone that knows me knows how bad I must have been to stop talking!!) and socialising was difficult. It wasn't helped by the fact that any time we had dinner with friends I had to disappear into a room and get down on my hands and knees to try and relieve the pain and discomfort I would get in my tummy (I was given the label of IBS at some point but that is just a title on give to people when we haven't got a clue what they really have or don't want to bother looking!). My health deteriorated badly yet the doctor just said it was stress. I didn't, couldn't find the strength to fight them. I was beginning to look like I was at deaths door - pale, drawn, suitcases under each eye - yet it was just stress.

Somehow I had managed to go back to work but as time went on my collegues and boss often made the comment that I used to have much more energy and perhaps it was because I had "settled in to the job". I didn't like what they were implying but couldn't prove them wrong because by that point I was almost crawling in to work.

I sometimes managed to go to the doctor when one of the symptoms was really bad and kept getting sent to specialists for tests. I daren't add up how many I've seen and how much money it must have all cost. I kept getting told that the results weren't exactly normal but nothing that they could pinpoint so they couldn't help me and I found myself back to square one. I even went to a gastroenterologist to have my hemorrhoids tied (and what a wonderful experience that is!) and said that I felt like my intestines had gone on strike and had to take magnesium all the time (had realised it stopped the chest pains, cramps and twiching) but it fell on deaf ears.

The Rise

Somewhere early 2010 I decided to try and lose a few pounds and thought that may help. I was often really bloated and swollen and felt really fat. I was regularly asked if I was pregnant to the point where it didn't even surprise me any more. One person even asked me if I had lost a baby but to be honest there were many a time when I could have been mistaken for being at least six months pregnant. I even had clothes of two different sizes in the wardrobe - one for the morning and one for the afternoon. I often said that when I ate a cake I changed a dress size but everybody kept saying that I was exagerating and it wasn't possible. But I really did. I assumed it was fat but now know it was bloating and that is still one of the first signs that I'm doing something I shouldn't be. So I decided to cut out the cakes, the pasta, the bread. And I started to pick up a bit!! I just put the weight problem down to my metabolism and having fat genes and never thought anything about it. By September 2010 and a summer consisting mainly of salads (there are some benifits to living abroad), I found the energy to fight back. I decided to go to the doctors and insist on being taken seriously. To be honest, I thought it was just a question of time before they announced that I had cancer and that it had taken so long to diagnose that it was going to be too late for me, but I had to know. After some insisting and the GP finally admitting that he didn't know what else to do, I was sent off to an internal medicine department in the local hospital. I'm still not sure if he thought they would send me off to the psychiatric department or not though because I'm sure he thought I was either inventing it or a hypochondriac of which I am neither, but he even managed to make me wonder if I was really imagining it all and losing my mind. The doctor asked lots of questions and at some point talked about my digestive problems and I said that I didn't have any food allergies but sheepishly admitted that I had been looking on internet and thought that perhaps I may have difficulty digesting carbohydrates as I seemed better without them and worse with but that perhaps it was just a coincidence. You have to know that until then, I genuinely believed that anything other than traditional medicine was absolute rubbish. I am a scientist and believed that science held the answer to everyhting. A little naively. Anyway he prescribed a list of tests and one of them was for coeliac. To this day, I think that man saved my life (even if I'd given him the idea). I had seen a description of coeliac but truly didn't feel that it corresponded to me. I wasn't losing weight and I had constipation not the runs so wasn't what I was seeing described. So in December 2010 when the test came back positive, I cried out of relief more than sadness. I had a name, a starting point, something I could fight even if I realised it wasn't going to be that simple.

Healing

So that was the beginning of the next battle and for a while I lived on fruit, veg and meat and really picked up. I was wonderful to finally start having energy back again. Most of the symptoms that had plagued me finally started to disappear. I wasn't perfect but I had read that it could take time but I wasn't worried. I then discovered the gluten-free aisle in the supermarket and tucked in to gluten-free pasta and bread. Bouts of tiredness and the other symptoms showed their ugly head from time to time but I put it all down to being "glutened". Then I read that coeliacs often had dairy intolerance so cut that out and that made the tummy pains better and also the migraines. But it never fully went away and I wanted it all to go away. I know that may seem like I'm exaggerating and I should just feel grateful to feel better but when you have been ill, really ill, for a long time and you get a glimmer of what you could feel like, you want it all. My views have drastically changed on many things over the past two years and I now believe that we all have a right to feel well or at least better and we shouldn't accept anything else. Hearing people saying that this pain or that problem is due to age when some aren't even 40 bothers me. We can all feel better. I know there are some illnesses that can't be cured, unfortunately, but I sincerely believe that a vast majority can be radically improved. So getting back to my story, I had spent hundreds of hours researching on internet. Biology and anatomy have always fascinated me and I've always been an eternal student so I enjoyed the new challenge. I wanted to know why. Why am I better some of the time and not others? Could I do anything? I started to have a few ideas but had a really bad period and dragged myself back off to the doctors although by this time it was more of being thorough as I'd lost hope in medecine and refused to take pretty much most medication apart from paracetemol as nothing had helped me until now. He pre-diagnosed me as having ME (otherwise known as Chronic Fatigue Syndrome but which again I believe is a title that hides many things and in July 2011 I got sent off to a specialist that he'd used before that dealt wih fibromyalgia and ME. He confirmed the diagnosis of ME but also added Chronic Candidose on to the list and sent me packing with a treatment, this time a natural one so I was happy to try. I again did my research and put everyone on a Candida friendly diet for a few weeks and in September had more enrgy than I had had in probably 20 years. I felt amazing. I was full of it. I actually remember really enjoying myself and feeling again and jumping out of bed.

Unfortunately it lasted about four weeks and things went down hill again. Nothing like "before gluten" but not how I could be. I had no idea why. I tried to be really careful about what I was eating, looking where I may have eaten gluten but couldn't work it out. A few months and hundreds of hours of research later I heard about "true gluten" and being grain free rather than gluten free and decided to give it ago and cut yet a few more things out. Just a quick point on this subject because you may now be wondering what I am eating. I still enjoy tasty food and have managed to find alternatives to pretty much everything. I have really discovered a passion for cooking and most of the time I don't feel like I'm missing out Two years ago I would never have believed I could go without pasta or bread or biscuits but when you realise how ill it makes you feel, trust me in saying that you manage to give it up and find a way around it. I just don't know what it would have been like without internet though...

So I am now grain free, dairy free and yeast free (because of the candidose). January 2012 and I start making my own grain free dairy free yeast free bread made with quinoa, buckwheat, tapioca and potato flour. It is different and has a stronger taste but perhaps when you have been without "real" bread for so long you are less difficult. It seemed OK and didn't feel I was having reactions. My intestines seemed the same so I thought I was doing OK. However my asthma had been getting frighteningly wore and a new symptom that I'd had on and off for a few months started increasing and becoming more regular. The back of my throat and tongue would become numb (or swell up??) particularly in the evening. I put it down to a trapped nerve and changed seatin positions but without success. Had an MRI scan and found nothing so switched on the computer. After having looked at numerous illness, of which none really seemed to correspond to me, I came across a subject concerning the nightshade family - potatoes, tomatoes, aubergines and peppers. They talked about this family releasing a toxin into the blood through damaged and inflammed intestines (thats me) and giving asthma like symptoms and other reactions. So I decided to test out this theory. Two days without my bread (and some special allergy free cakes that I'd been eating since October that had potato flour in too) and the asthma and numbness disappeared. In one way I was happy but in another difflated because that means yet another food that I can't have (although problems with the nightshade family are very common) and now have to test the other three flours so I can adapt my recipe.

So thats where I am today. I am getting better but still concerned about allergic reactions and will go for allergy testing to the hospital even though I'm sure the allergy tests will be negative. I'm off to see a naturopath  this week and have acupuncture next week. I have tried other things but remain very sceptical about most of them. Time will tell. Why am I not satisfied with what I have? Because I don't want to get worse, I want to stabilise. And I want my daughter, who is also very ill and at least gluten intolerant, to enjoy her childhood and not be confined to a bed. I'm fighting for her, for me, for my family and for everyone else out there who feels like they are fighting on their own against some mysterious ailment. Medical progress is being made so we are told but today they aren't able to help us and we have to help ourselves. More and more people are suffering from "modern illnesses" with no name or being given vague titles with no cure and told to accept it or live with it. I want more. I want a future for me and my daughter and this blog will show my fight to get there.