I am 58 and have a medically mixed history with Coeliac (as spelled in the UK!). Born in the relatively early years after WWII, I was diagnosed as having a ‘wasting disease’. Initially I had digestive problems and unable to keep food down was placed under paediatric consultant Dr Dynski-Klein at West Middlesex Hospital. I was constantly ferried back and forth to hospital to try different dietary regimes. By the age of 7 I had been on a milk-free diet for a couple of years but, despite eating like a horse, was suffering symptoms of malnutrition complete with the distended stomach.
I under-went some pretty novel test procedures including the horrendous sweat test. At age 7 I was put on the gluten-free diet and things began to improve. I was not a ‘strong child’ but started to gain weight and my school work improved.
In 1968, at age 14, Dr Dynski-Klein had retired and under a new Consultant was given a biopsy the results of which declared me ‘free’ of Coeliac. There was never any explanation as what preceded this and I am only too aware that I need to be careful with my gluten intake.
Subsequently, in her early 50’s, my mother went through some dietary problems and testing but the doctors ignored the obvious until I suggested that the symptoms reminded me of my experience and mother adopted a gluten-free diet with almost immediate improvement. Mum went on to contract a high-degree of sensitivity to gluten but lived to 89 years of age.
When my wife and I had children we were concerned about the prospect of Coeliac and spoke with our GP. Both the children and I had blood tests and were declared free of the disease.
The Celiac.com website has proved a complete revelation to me.
It explained the milk-free diet, the dietary response, the biopsy and its results and threw some light on the whole historical context. More importantly, it has explained why I have been diagnosed as ‘free’ from Coeliac when in fact it’s more likely that I do have the disease in a very mild form with some of the more vague symptoms like the need to monitor my gluten intake, occasional word-dropping, and concentration deficit. Your recent articles on blood testing suggest that this is a not the definitive test suggested by my GP in the mid-1990s.
I would like to take this opportunity to reassure newly diagnosed Coeliacs that life does go on. There is relatively good awareness of the disorder now and that there are numerous commercially available products and pre-packed meals that meet your dietary needs. In my formative years we had to get some awful gluten-free bread ordered from the CoOp bakery and when we went on family holidays, mum arranged to have the bread posted to us! When I married the love of my life, Susan, she embraced the whole gluten-free ethos and early in our married life in complete ignorance of the difficulties suggested but adhering to a gluten-free regime produced a perfect gluten-free Victoria sponge for a visit from my mother. This produced tears of joy that somebody had cared enough to produce a real cake that she could enjoy without any of the side-effects!
I would be delighted to hear of other sufferers' experiences and any advice relating to my history.