My Daughter's Story

My daughter's story is quite a different one to mine. She was a beautiful baby that never cried, slept peacefully and woke up smiling. She was never ill, didn't have colds and grew into a healthy toddler. I'm not exactly sure when it started to change but I would guess around June 2008. She started complaining of a pain in her knee and we thought that she may have sprained it and as it was nearly the summer holidays we decided that she would be able to rest it then. I'm not even sure we took her to the doctors. She started back to school in September and it was still painful so I made an appointment with the doctor and we followed up with an xray which revealed nothing. A few months later we saw a podologist and was fitted with orthopedic insoles that would probably do the trick. Nine months later, there was still no improvement so when the dog chewed them up we took it as a sign to stop with that. We were then prescribed 20 sessions with a physiotherapists but that didn't help either. By this point you wonder if your child is imagining it or just being oversensitive and begin to doubt. We thought perhaps it could have been growing pains - whatever they are and left it yet again for a few months. She progressively got worse and both knees and ankles were now affected and she cried every morning getting out of bed because of the pain and limps around the house. One morning I broke down and decided enough was enough and took her back to the doctors demanding that he find a solution. We were then sent to a sports doctor who said that she knew what it was and she was to wear a leg brace for nine months and obviously not do any sports other than walking, cycling or gentle swimming. We were really pleased and went away quite positive. While there was a reasonable improvement, the pain never totaly disappeared. We went back and followed up with a few blood tests and more xrays but everything was normal and yet another doctor said they couldn't help us.

The frustration and pain you feel as a mother when you watch your child suffering and you can do absolutely nothing to make it better is unbearable. I have often thought about parents who have children with terminal illnesses and my heart bleeds for them. As a parent you would do anything, absolutely anything to find an answer and that is one of the major reasons why I am fighting for an answer today.

All this time there were other changes. She had pains at the bottom of her tummy and terrible wind. She became very moody. She cried all the time and we rarely saw her smile yet alone laugh. She didn't socialise well with other children any more. She went from being a very strong student to a very weak one. She could no longer concentrate on anything. We'd spend hours trying to help her with her homework but nothing we did helped. The atmosphere in the house was becoming very difficult because every night was a battle and finished with my husband getting really angry with her. Added to that she could no longer sleep at night regardless of what we tried and made getting up in the morning extremely difficult. We no longer felt like we had a relationship with her and I felt like I'd lost my daughter. She also had toilet problems. She would spend hours in the toilet. She would have to go every five or ten minutes for a wee and very urgently because she couldn't hold it. We had her tested for water infections but each time it came back negative. Going to the cinema or going out in the car was a nightmare.

So how did they cope with all this at school? I have to say they were, and are fantastic. She was allowed to leave for the toilet whenever necessary as they clearly saw she had a problem but we thought perhaps a weak bladder and they worked round the fact that she couldn't do sport. They even asked her to go to extra classes to try and help with the learning problems. They were brilliant and made her and my life so much better because at least I didn't have to fight with them - even if I had proof of nothing - and I am extremely grateful to them all.

By now two and a half years had gone by. We'd started to accept that she had a terrible personality but couldn't do much about it. The same for the leg pains (she put on the leg brace whenever it became too much) and the constant toilet trips (the first thing we did went we went out was to find out where the toilets were!). I was however thinking about taking her to a pyschiatrist for the crying and mood swings as I was beginning to think we were heading into a depression. I think back to that time and kept saying to my husband and my parents that there was something not right. Nothing I could put my finger on but too many 'little' problems. I had no idea what but something not nice. I wasn't too concerned about cancer because the symptoms had been going on for far too long but some genetic illness that would finish horribly.

Sometime in September 2010, I talked about schooling in England and my daughter jumped at the idea and said she'd like to go. I still don't know if it was because of the tension in our home or because it was something exciting and new, but for once she was enthousiastic about something so we set it up. She would go to school in England in January and February 2011 and stay with my parents. They would look after her and my newly-retired mum would bring her back in the mid-term holidays. So off she went. I was a little apprehensive but not particularly worried as she was with my mum and dad and I knew they would do a great job (after all they raised me!). I was only worried about her putting on weight as we had to keep an eye on her as she put weight on really easily. Now we know why. After about a week, my mum phoned saying that she couldn't cope. The mood swings, the toilet trips and the insomnia were just unmanageable and perhaps I should think about fetching her back. I knew if they had come to that, then it was really bad.

In December 2010, just before she went to England, I was finally diagnosed as being coeliac so I had immediately had her tested and was sure that the test would be positive. It came back negative. We were pleased it wasn't that and she could enjoy the same food as her brothers and left it at that. When my mum made that call I made a decision that would be the beginning of getting my daughter back. I had spent  many many hours researching coeliac disease and gluten intolerance and thought she could perhaps, maybe, still be gluten intolerant. I mentioned it to my mum who wasn't really convinced but said she'd give it a go for a couple of weeks and we'd see what happened.

What happened was that my beautiful baby daughter started to live again. The change was amazing. After only a couple of weeks she started smiling again. Laughing. The mood swings and the insomnia reduced, the toilet trips slowed down and the tummy pains disappeared completely, the homework situation improved drastically and she started to sleep at night. She still had pains in her legs and ankles but a little less. My parents agreed to keep her on the diet and to let her continue as planned.

I have to add that my husband was still very sceptical as were other people around us. We are surrounded by cartesian minded people and none of this was scientific enough. After all, the coeliac test had come back negative so perhaps it was just a coincidence, even if it had been going on for nearly three years! It was only when you saw the change in her that they began to accept that perhaps there was something in it.

So how did she deal with being gluten-free? Absolutely brilliantly! She felt so much better that even the idea of eating a 'normal' cake no longer appealed. She prefered to go without rather than risk eating gluten and that is still the case today. The reaction after she has unknowingly eaten gluten is so unpleasant and lasts for three days and that is more than enough incentive to leave it well alone.

So we were still left with ankle and knee pains and due to the fact that she now had enough energy and strength do do sport we had (and still do) at least one new sprain every month. We have it checked each time to make sure it wasn't broken. The breakthrough for the pain came through two unplanned events. In August 2011, in a bid to get rid of Candidose, I put the whole family on a 'cleansing' diet for two weeks and by the end of the first week, the pain disappeared but I didn't make the connection. The second accident came in September 2011 when she had braces fitted on her teeth and could only eat soup, apple compote and yoghurt. And again the pain disappeared. So I set about trying to work out what she could be eating that could cause a problem and somehow came to a possibility of it being yeast. It was easy to test so two weeks without yeast (and no pain) with reintroduction on day 15 and she had a major reaction where she passed out. We did the same test a few weeks later and the same thing happened so since she has been yeast free and pain free!! She still has a new sprain every month and a few other symptoms so I am pretty sure there is another food intolerance in the background but a much milder one than the others.

So that is where she is today. We have a fantastic relationship and help each other. Its been wonderful for both of us to have someone that 'understands'. We share so much already and I no longer fear puberty and adolescence although I'm sure there'll be the odd door banged in a few years time... I want answers and I want her to be fully better. The elimination diet is time consuming and long and I just wish there was a reliable test that would give us the answers. She is also probably lacking some vitamin or mineral because of the intestinal issues but as for now, I don't know which ones. She had stopped growing but has now picked up but I would really like to get her stable before she hits puberty and the 'imbalance' gets worse.

So my advice to all you parents out there is to trust your instinct. Something I didn't use to do. You know your child better than any doctor. You see them and live with them and the doctors only have a few minutes with them each time. You may not have all the answers, and its hard not to feel guilty or responsible because you haven't got a solution, but them just knowing you take them seriously is a good start. My daughter didn't correspond to a typical 'coeliac' but she had the same symptoms, as did I. So don't give up and accept bad health. There are solutions and things to try but unless you are one of the lucky few, don't expect to much help from the doctors.