I am in my 40s. According to the SEER report the odds of a woman being diagnosed with breast cancer between the ages of 40 and 50 are about 1.5%. This is an average and includes people with varying risk factors. Because of this risk my doctors recommend that every year I go in and spend an hour waiting to have my asymptomatic breasts smashed and irradiated to check for the possibility that I am in that unlucky 1.5% who will be diagnosed with breast cancer in her 40s.
That said, when my relatives who are both genetically susceptible and who have multiple symptoms go in and request a blood test for the DQ2 and DQ8 genes or for the IgA reaction to gluten they are told that it is not necessary.
This makes me crazy.
We know from the Warren Air Force Base Study that undiagnosed celiacs lead shorter lives. Most of the celiac men in that study were dead by the age of 65. Only about one in four without the disease was dead by that age. We know that this disease is linked to other more dangerous and painful autoimmune conditions like rheumatoid arthritis and autoimmune or Type 1 diabetes. We know that about 1% of Americans of all ages have this condition. We know that women with the disorder are 350% more likely to have a child with autism. Although there is no cure, the strict gluten-free diet seems to eliminate most of the problems. We have a fast, safe, low risk, no radiation way of testing for susceptibility (the gene screen) and active disease (the IgA screen) simply by drawing blood.
Yet we do not consider this a routine test that should be part of a physical when someone presents with depression or persistent anemia. It isn’t yet standard every five years for people with Down’s, first order relatives of celiacs or people with other autoimmune disease even though each of these groups has a very elevated (as much as one in ten) chance of having the disease.
I look around at the suffering so many people I know have gone through and it makes me crazy. This is not a rare disease. This is not a mere nuisance problem. It is responsible for up to 2% of all cases of epilepsy and many of the seizures that do not respond to drugs. This is a real disease causing real disability and premature death. It is not rare. It is about as common as breast cancer in my age group and unlike breast cancer it is fixable with diet.
And yet I need to have a section on this blog about how to get tested when you are feeling sick and your doctor says you don’t need a test. Because at least if you bring in the test he doesn’t approve of, he will actually test you with the one he believes.
This is ridiculous and it needs to stop. We need to demand routine testing at least for the high risk groups.
Who is with me?
