Six years ago today my niece died from epilepsy. She was 14 years old. Based on the path of her illness I don’t think she died of undiagnosed celiac disease. From what I have read, Celiac induced epilepsy tends to follow a different pattern. But today I was reading a 20 year old book on juicing and even there they noted the link between epilepsy and food sensitivities. It made me want to scream.
Losing her was horrible. Thinking about it makes my stomach and chest ache.
Thinking that somewhere out there another family with a gluten induced form of epilepsy is losing a child because the doctor did not test for food sensitivities makes me so angry that the thesaurus fails me.
I hold nothing against the doctors who misdiagnosed me in the 1980s. Nobody knew about celiac disease then. But now, with gluten-free food showing up at every grocery store, and doctors in Iran (Iran!) recommending that every child with epilepsy be tested, failure to test every child with epilepsy, Down’s Syndrome, Type 1 diabetes, and autism is unconscionable. Yet it happens every day and given that epilepsy is so common and so dangerous the odds say that somewhere tonight some other parent is getting the bad news. And this time, maybe there was something that could have been done.
This must stop.
If your doctor tells you that she knows it isn’t a food issue, ask her how she knows without testing. You can have skin cancer that is obvious to your neighbor’s brother and they still run a biopsy and test it, why would they not test this? Print off the studies on the epilepsy part of this site and bring them in and then insist that your doctor run a test. And if she still won’t do it, run the Enterolab tests (they are cheaper than the illness) and if something shows up, then go back (or really, at that point, find a new doctor) and make her prove them wrong.
Sure, there are pediatricians who hate my guts, but my child is alive and well and I consider that to be a very acceptable trade-off.
I don’t intend to hold out false hope. Celiac disease masquerading as epilepsy appears to be a very small percentage of total epilepsy cases. But what a worthwhile use of medical dollars to find and save those children.
We miss you Marieke, and we always will.
