It may come as a surprise to find that not all people with coeliac disease sit on the loo for all of their lives until the time they get a diagnosis. In fact they perceive themselves as healthy, if it's occult enough.
I posted on what I though of the neurology department at the Queen's Medical Centre in Nottingham when it comes to gluten ataxia:
Go to Sheffield!!!!!
Now I've stumbled across this glowing account of the benefits of occult coeliac disease, again from the Queen's Medical Centre, Nottingham. Here are a few snippets from the main text:
"EMA positive participants (n=87) were on average slightly lighter by 2.2 kg (p=0.08), were more likely to have reported their general health as being good or excellent"
"EMA positivity was associated with an 8% reduction in mean serum cholesterol (0.5 mmol/l; p less than 0.01) and reductions in mean haemoglobin (0.3 g/dl; p less than 0.01)"
"Those affected report "better health" but they do have an increased risk of osteoporosis and mild anaemia. In contrast, they have a favourable cardiovascular risk profile that may afford protection from ischaemic heart disease and stroke"
"The important finding of a favourable cardiovascular risk profile in these individuals suggests that any screening programme of the general population would need to be carefully evaluated in terms of risks and benefits before its introduction"
That last snippet needs to be read very carefully.
To summarise: In Nottingham, undiagnosed coeliac disease is good for you. Never mind the occasional fracture, bowel cancer or auto immune neuropathy. And I'm trying not to grind my teeth at the stupid glee over lower than average total cholesterol (in a predominantly female population!). It's obviously better to die of bowel cancer than a heart attack. Well, if you're a Nottingham epidemiologist that seems to be the case.
Let's just head over to Northern Ireland for a while (rather than Sheffield, we want a more general overview this time). The first point is that the anti-endomysial antibody test is pretty rubbish. To quote McMillan et al:
"EmA-negative coeliac disease is common. Reliance on EmA testing to select patients for biopsy will result in significant underdiagnosis"
So obviously the benefits of coeliac disease, so popular at the Queen's Medical Centre, are more widespread than we realise! Certainly in Northern Ireland. Unfortunately there are certain benefits of occult coeliac disease which Nottingham forgot to mention, particularly death! Again from Belfast:
"Patients with coeliac disease or gluten sensitivity had higher mortality rates than the Northern Ireland population. This association persists more than one year after diagnosis in patients testing positive for anti-gliadin antibodies"
What is meant by "gluten sensitivity"?
"There were 1133 patients who tested positive for anti-gliadin antibodies and they were defined as gluten sensitive"
This later group would not even be considered by Nottingham as being unwell because they don't usually have gut pathology and their anti-gliadin antibodies come and go. How common is this category of sensitivity? McMillan again:
"The results establish that IgA antigliadin antibody prevalence is high at 5.7%"
That's one in eighteen people.
Using an antibody test. Antibody positive patients will only be the very big tip of a massive iceberg. One you start looking at how the innate immune system functions, with its NK cells that don't use antibodies, when challenged by gluten, you have to wonder whether anyone is immune to gluten damage.
You can guess what I think.
BTW If anyone got down to the comments of the gluten ataxia post and read those by Toxic, you can get an idea of how clued up Nottinghamshire seems to be when presented with a person suffering full blown, antibody positive, severe, multisystem gluten damage. They missed it. Lots of times. Not sure if Toxic attended the Queen's Medical Centre, but I'd guess so.