Bowel Cancer UK want to know about peoples experience of endoscopies. Do take part and confirm if you were diagnosed as a coeliac during yours to help improve the process and aid their research.
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The endoscopy result was inconclusive as I had only been off antihistamines (prescribed for chronic urticaria and angioedema) for about 10 days prior to the test to lessen dangers of reactions. The gluten challenge was required by Stockport PCT (Primary Care Trust in control of spending) "if I wished to be prescribed gluten free bread etc. again", despite having been diagnosed and part of a scientific study when 13 years old, 60 years ago.
Two cousins, children of different uncles, were coeliacs, one from birth, the other, in her 40's, so there is a strong history.
Having eaten the proscribed "wheat" foods for the specified time, I felt quite unwell, but had persevered. However, some weeks later I was admitted to hospital as an emergency.
What first appeared as another "heart attack", turned out to be severe gastritis. The Hospital Consultant (At the Hospital Trust) wrote strongly to my GP saying that I must be considered as a Coeliac and never put through such distress again!
The endoscopy is not reliable for a negative diagnosis as all other possible masking factors have to be taken into account and this is not generally done.
Sadly, it is only slightly better than the blood test, which is not reliable for positive or negative diagnosis, according to a Professor specialising in CD in paediatrics!
I was diagnosed coeliac at 16months old, 63 years ago. At age 12 I was told I could eat normally as that was what they believed. When I Was 40 I was losing blood in my stools, was recommended to a Specialist and although I told him I had been coeliac he told me I couldn't, be as I was tall, overweight, didn't have diarrhoea and was infect constipated. After 6 months tests, I.e. barium enema, barium meal, and colonoscopy, I was sent to a gastro enterologist who did an endoscopy and confirmed I was very definitely coeliac.
I suffer from bouts of microscopic colitis and get blood in my stools when it flares up and it is a secondary condition to having CD. I find that as long as I avoid all gluten alcohol and astringents like aspirin then I'm fine.
When I first complained of this the specialist said I was too healthy and must have imagined it! But that was in the dark ages before diagnosis. I was finally diagnosed after being refused blood at a donor session and when I went to see a GP they referred me to a specialist as I obviously had internal bleeding. And I thought phew at last. And the endoscopy showed that I am very definitely a coeliac too.
So if coeliacs are at their highest risk of developing bowel cancer within the first year of diagnosis could this be anything to do with having to eat gluten for six weeks and damaging our bodies purposefully to undergo the endoscopy?
I'm pretty sure that if I hadn't had to go through that process that I wouldn't feel anywhere near as bad as I do now one year on!
The other thing that I find interesting with the whole process of eating gluten for the endoscopy is that I ate it for 6 weeks before my endoscopy last August (2011). I couldn't tolerate the procedure and so I had to do it again in November 2011. The second time I only had to eat gluten for 3 days! Again I couldn't tolerate the endoscopy procedure so my consultant wrote to my GP advising that because my blood count was so high that I should be diagnosed as coeliac without the endoscopy.
I hate the thought of other people having to go through such hell, especially children.
To my mind the procedure really does need to be looked at, but who do I send my thoughts to in the medical world - does anybody have any ideas?
Does anybody else agree that there should be changes to diagnosis procedure or do people think it's the best thing to do? I'm really interested to know other peoples opinions.x
I hope this will improve the service for new patients. I was treated at a small hospital which was part on a larger trust I was not told we had a specialist unit at another of their sites and I worked for them!
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