Jo’s coeliac story

Where to start?!

Last February, I was feeling pretty rough.  I couldn’t seem to shake off a cold and I was always tired.  I asked my General Practitioner for a blood test and, as my two sisters are both coeliac, I asked for that to be tested, too.  To our surprise, it was positive.  However, because of the nature of the NHS, it took six weeks to see the gastroenterologist, six weeks wait for the biopsy and then another month to have the biopsy result from the gastroenterologist.  Fortunately, it was only a few days from then before I felt better!  The amazing thing about coeliac disease, is how quickly you FEEL better, even if your body takes a lot longer to heal.  The gut needs 12 – 18 months to repair properly.  

My sons’ diagnoses have been a lot more traumatic.  

Last year, Son 2 (13) was having a day off school per fortnight with diarrhoea.  I wondered whether it was age (being a teenager!) or stress at school.  When it became at least one day per week we went for a blood test.  Unfortunately, the sample was small, as he’s not very generous when giving blood – and then was broken in transit!  Sadly, on the next try at getting a sample, it was the third attempt before the nurse was able to get what she needed.  That was last Easter…  The result came back negative for coeliac disease, but the gluten-related illness continued.  We still don’t have a diagnosis, as the biopsy carried out in January this year was negative for coeliac disease.  The gastroenterologist has told us that it is a wheat-intolerance and that he may grow out of it…  but at least he prescribed gluten-free food.  In the mean time, Son 2 is eating gluten-free and his headaches have stopped, too!  

Son 3 is having a harder time of it.  We self-diagnosed him with coeliac disease two years ago, but when the gastroenterologist got involved the Doctor needed proof.  So, Son 3 had to do the “gluten challenge” diet, ie eat at least four slices of gluten bread each day.  When you’re the parent and have to take this action, it feels as if you are poisoning your child – with the guilt and anxiety that accompanies such a fear.  Of course, to start with, Son 3 thought it was great to be able to eat everything, but he soon had doubts – as the diarrhoea began and then the constipation … and the pale skin and black eyes returned … and the energy levels dropped … and the grades fell at school.  The biopsy showed a negative result, as have all the usual blood tests.  The gastroenterologist has just had a last-ditch blood test done (an HLA ?!? test), but has at least agreed to prescribe gluten-free food.  

Eating gluten free is usually extraordinarily expensive, which is why Black Farmer sausages are a staple: they’re great for all the family.  

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~ by theblackfarmer on May 7, 2009.

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