It overwhelmingly frustrating to advocate for a cause that doesn't have it's facts straight.
Those of us who advocate for Celiac Disease have lots of facts, but everyone is using different facts.
Here's what I mean....
The # of people with Celiac Disease in the US is:1 in 100 people
1 in 133 people
1 in 141 people
1% of the population
1.8 million people
2 million people
3 million people
or better yet...
according to Wikipedia "the condition is thought to affect between 1 in 1,750 and 1 in 105 people in the United States"
The % of people who have celiac disease but have not yet been diagnosed is:95%
And don't even get me started on the ancestry & demographic discussion.
Why are the facts so confusing and inconsistent?
Should we care?
I think so. It is confusing enough to explain a complex disease such as Celiac without having inconsistent facts and figures to sort-of back us up. I hate to think this but it seems to highlight how unimportant knowing the facts and true diagnosis is to the medical community.
Celiac Disease is a life-altering disease with a food-based cure (if you catch it before it causes too much long-term damage) and somewhere between 80 and 95% of the people living with it don't know it. That should be an embarrassment in 2013.
Maybe we should pick one at random and make it the standard that everyone quotes.
Maybe we should raise a little hell with the research institutions.
Maybe we need to raise some money for a study.
Maybe the pharmaceuticals will do some research while developing their celiac drug.
But I think maybe we'd have the most luck calling on the Consumer Packaged Goods Industry to take the lead. The food companies will be the greatest financial benefactors to an increase in diagnosis.
My rant for the night is complete.