A different Perspective of the Impacts of Celiac Disease.
The reality to me of having Celiac Disease.
I was diagnosed (gene and biopsy) with Celiac Disease two years ago. All was fine for a while. As I live by myself it was not a great problem to make the kitchen gluten free; all visitors share my gluten free fare. Armed with Celiac Australia’s very well set out and informative Ingredients booklet, research on the internet and online buying I was well prepared.
Over the past six or so months I am finding staying on the diet difficult. All those adds on TV for Kentucky Fried – which I would love to eat about three times a year. McDonald’s hamburgers (on their own buns), which I am addicted to, are not for me now nor are fresh jam donuts. This situation is not helped by my lack of interest in
cooking.
Previously; I have never been one who looks at a particular diet as being necessary for what ever disorder I might have or think I have. Most certainly do not like to “make a fuss” or bring attention to myself at any time and particularly when eating out. This is
one of the hardest things for me.
I was due to go to Los Angeles and Las Vegas two years ago with my sister, just before Celiac Disease was diagnosed. In the end I could not go as the diarrhoea and vomiting would have made it impossible to travel. It was after six weeks of on and off diarrhoea and vomiting that I was diagnosed.
I have done a considerable amount of travelling in my life time. A trip to Hong Kong was to be my last trip overseas. There are sufficient suitable foodstuffs in Australia which I could take with me for the four days in Hong Kong. This should have relieved the stress of needing to find gluten free food in Hong Kong but it did not. I guess now
I am somewhat paranoid.
Am now seventy two years old, and of course have other health problems.
Osteoarthritis in the knees which can cause problems at times. Lungs do not function as they should, which lead to a lung infection. Which came on without any warning and resulted in needing oxygen for a couple of days and a stay in hospital recently.
If I eat food containing gluten within 36 hours or so I end up with funny type of pain in my tummy, diarrhoea and mouth ulcers. If I only eat gluten containing food on one occasion these symptoms do not last long.
Problem; there are now the three disorders which could make an overseas trip very uncomfortable. The Osteoarthritis and the lung problem I could deal with. The finial crunch being the Celiac Disease. I could not imagine anything worse than being on a plane coming home with a good case of diarrhoea and vomiting. I am sure after the memory, which has not left me, of six weeks of on and of severe diarrhoea and
vomiting that I could not risk this again while overseas.
I suppose in a way I should be “grateful” that I was not diagnosed earlier in my life. Mind you it would have been nice not to have painful mouth ulcers and diarrhoea and vomiting every so often for some years.
Knowing I will need to stay on a gluten free diet for the rest of my life is somewhat depressing. I do not like being “dictated” to by the gluten free diet that Celiac Disease forces on me. There is no vaccine which will “rescue” me.
The development of a Celiac vaccine is some years off; a lot of work needs to be done. If it is successful I cannot look forward to it. NexVac2 has been tested only on those who have the DQ2 gene and who are Seropositive.
I have the DQ8 gene and am Seronegative. Thus it will be a very long time indeed before a vaccine is developed for those with the DQ8 gene and who pose the added difficult problem for researchers; if they are also seronegative. Doubt if I will see it in my life time.
Most likely my age makes it difficult for me to change the habit of a life time of eating whatever I want. I want to rebel and eat gluten containing food.
I cannot speak for others; for me there are not only the various inconveniences of being on a gluten free diet, but the emotional problems which go along with it.
Jennywren
