Coeliac Disease
I write this article, from first hand experience we have as a family, from my daughter. If I can help one family and child not to go through the pain we did, I have helped somebody.
My 8 year old daughter has Coeliac disease (pronounced: See-li-ak). I personally dislike the word 'disease', it is something that provokes ten steps back from a lot of people and the question "wow, what’s that"? They think it is something terrible or contagious.
The fact is Coeliac disease is a life long inflammatory condition of the gastrointestinal tract. This is caused by gluten, a protein found in wheat, and similar proteins in rye, barley, and oats.
In a Coeliac, gluten damages the lining of the small intestine which reduces greatly the ability of the gut to absorb adequate nutrients from food. Wasting can occur, leading to severe illness resembling malnutrition.
What are the symptoms?
Coeliac patients may be acutely and severely ill with weight loss, vomiting and diarrhoea, or they may have chronic, almost trivial symptoms such as tiredness, lethargy and breathlessness. Usual symptoms would be somewhere between these extremes. Adults may have a history of abdominal or intestinal upsets, or they may suddenly develop the condition at any time. Anaemia, abdominal discomfort, mouth ulcers and weight loss are common features. A baby who is Coeliac would be fit and well until after the introduction of gluten containing solids. Then the baby would develop typical pale, bulky, offensive smelling stools, become miserable and lethargic and generally fail to thrive.
All the symptoms described can be characteristic with other medical conditions such as Crohns and Ulcerative Colitis to name a couple, so people should not jump to conclusions but should seek medical help. Some people are diagnosed as Coeliac with no obvious symptoms, for example when relatives of a Coeliac are being studied. It is really important that a person does not 'self diagnose' and put themselves on a gluten free diet without consulting their doctors, and specialists as any test would turn up a false result as there would be no damage to the gut lining, so they could end up with a false negative result when in fact they could be Coeliac
It is not only a childhood condition, it was thought to be exclusively a childhood condition back in the 1950's but nowadays it is recognised that many more adults than children are diagnosed. Coeliac symptoms can manifest themselves at any age and according to Coeliac UK statistics, most Coeliacs are diagnosed when aged between 30 and 45 years.
My daughter was diagnosed at 14 months old. As a baby she was always very 'sickly' and we were backwards and forwards to the doctors, they tried her on Soya milk as they thought she may be lactose intolerant, but she was always under the correct centile line for her age. We were backwards and forwards to the doctor, she was always very teary, miserable and lethargic, and would sleep for many hours at a time. When she got to the age of 1, she seemed to tick along in life, but she was always very withdrawn and never really happy. She started to walk at around this time, then over what seemed like a few weeks, she would have one episode of vomiting, then nothing for a week, then another episode. I was backwards and forwards to the doctors, who told me she had a 'virus' and then a 'bug'. I knew there was something else. They prodded and poked her, they sent us home and the cycle went on. It got to a point when we tried to go away as a family for a weekend, as she hadn’t vomited for about 6 days. We walked into the hotel room, and she was really sick everywhere. My husband decided enough was enough, so we drove right back down home from Warwick, straight to the hospital A&E with her in our arms. They tried to send us home and told us she was ill with a virus. Basically we refused point blank and demanded she was referred up to the childrens ward to be assessed properly.
More tests, more prodding and poking, and then a doctor came on shift that took one look at her and asked us if she had been tested for malabsorption- we just looked at each other in horror. There was our daughter, held up in front of us, with a huge tummy, skin and bones. She couldn’t stand anymore, she had sunken eyes, my daughter was wasting away in front of me. This doctor took some bloods, and we were admitted to the ward. Two days later the tests came back, they wouldn’t tell us what it was, but they were 95% sure of the answer , and we had to go to St Barts Hospital in London for the firm diagnosis. To say we were worried was an understatement.
There we met the paediatrician gastro specialists, who did a biopsy on her tummy, and it was confirmed that she has Coeliac Disease. We stayed there with her for 2 weeks, they told us that all she had to do was follow a gluten free diet for life and she would be fine again. We couldn’t imagine her eating anything at all, as she had stopped completely. Slowly but surely she started to eat, be sick and bad, have terrible diohrea then be okay for a couple of days. We went two steps forward and eight back, but they told us her gut lining would take some time to heal. Over the days, we saw her get better and better. We had to sit her in front of food psychologists, they had to make sure she could chew and eat properly in case she had forgotten, that was awful for her.
But after two weeks, she walked out of the hospital, in her new shoes. ~She was so determined, she had stopped doing anything, and that included walking. We were so proud to see our baby better, very frail and wobbly but we knew what was wrong with her and we could now deal with it. She was temporarily lactose intolerant as well, because of the damage in her tummy, and she had to have formula that she couldn’t drink so it had to be administered through a nasal tube. But after 3 weeks that came out, and I introduced cows milk again.
Now she is a healthy happy 8 year old, who manages her special diet wonderfully, I am so proud of her. She is living proof that you can have a normal life; she never stops, and is as bright as a button. There is nothing that holds her back; she lives life to the full.
One thing I have learnt from all this is always trust your instincts. If we had listened to our then GP, and not fought for her, she would not be here now; we came close to losing our precious daughter. I read so many stories of people who have been 'fobbed off' by their doctors and have been ill for so long and suffered unnecessarily. An easy blood test organised by the GP, and then diagnosis by biopsy. In some rare cases, the blood test is not conclusive, and will give a false negative result, the only way to confirm 100% is by intestinal biopsy. It is in those cases a case of going back to the GP and asking, demanding a biopsy.
When she was first diagnosed with it I thought it would be really difficult to manage the diet, but everything we eat she can have gluten free. The wide range of gluten free foods in the supermarkets is brilliant, she has to have special bread and pasta, and I cook a lot of things for her, so she doesn’t miss out. More and more things are popping up, as there is more demand for the foods as more people are being diagnosed.
Our only obstacle sometimes is other peoples ignorance, but thanks to the charity Coeliac UK who we belong to, they do all they can to raise awareness of the condition, it is now thought that as many as 1 person in every 100 are Coeliac, there are so many undiagnosed people out there.
This is a members article by lilybaggins
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