Tuesday, October 20, 2009

Celiac Survey

There is a student at Columbia conducting a survey about Celiac Disease. Its open to anyone who knows about Celiac Disease. Its a quick 20 question online thing, go ahead, you want to click it.

The last question is:
Tell me one thing that the [Celiac] Center [at Columbia University] could do better.

Perhaps I am feeling a bit sassy today. Here is my response:

Its medically irresponsible to diagnose a patient and not offer him/her and family members the necessary tools to learn and cope with the disease. No one diagnosis someone with diabetes and says "you are diabetic, go google 'sugar' and don't eat it." But that is exactly what my doctor did - over the phone. He told me I had Celiac Disease and go to on line and find out what gluten was and to not eat it.
Patients are responsible for their own health, but having free time and access to the internet should not be mandatory to not be sick.

Doctors need to be educated on celiac disease and gluten. They need to work to council patients on what does and doesn't contain gluten - especially hidden gluten in rx drugs, envelope glue and other unexpected non-food locations. They need to have follow-ups with their patients to monitor their condition and gluten intake. The Center should reach out to doctors to inform them as well as provide them with information on recently published relevant studies as well as ways to help them provide adequate care for their patients.

Centers need to provide better information to schools, teachers and school lunch programs to help accommodate or exempt students from programs.

Centers need to raise awareness and lobby for better and ACCURATE food labeling laws. The fact that gluten does not need to be disclosed, on US food labels, hinders the success and health of patients with celiac disease, gluten allergies and gluten intolerance.

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