***Disclaimer: I am not a medical profession. These are my opinions and experiences only unless indicated otherwise in this article. Do not use this information in place of doing your own research on these issues.***
Until recently, med students were taught that Celiac disease was very, very rare. General practitioners expected to see approximately one patient with it in their lifetimes. The education they received about Celiac and eating gluten free was minimal at best. Now, Dr . Alession Fasano with the Center for Celiac Research says As many as 1 out of 133 people in the US have Celiac Disease. Of these 3 Million people in the US who have Celiac Disease it is estimated that 97% are undiagnosed. It is way more than the medical profession realized. And then you add in people who are gluten-intolerant or following a gluten free diet as part of a treatment for Autism or eating gluten free for any other health reasons and the numbers multiply exponentially.
That said I have to say I have been seriously underwhelmed at the knowledge within the medical community at large about Celiac disease and eating gluten free. Why you ask? Oh, let me share some of my experiences. Where to start….
When I started having GI symptoms over a prolonged period of time, I knew I had developed Celiac. I had several of the more classic symptoms and my mom has it, and Celiac does have a genetic component. I went to my primary care doctor, told her about my symptoms and family history and requested a blood test to begin the process of formal diagnosis. At first she told me I couldn’t have the test, I did not have Celiac. When I pressed her she told me my symptoms did not match with Celiac and that family history did not really play a role. What???????? I finally insisted she give me the blood test. She was surprised it was positive. I was not.
Just before I gave birth to my son my nurse called down to get me a dinner plate for after the delivery. When she told them I had to have gluten free food they told her I could pick from fried chicken or macaroni and cheese. Neither of those were gluten free. I was also served toast, croutons and oatmeal before I finally told them to just stop bringing me food. Thankfully we had thought ahead and brought some food from home with us so I knew it was gluten free.
A physician assistant working in at my gastroenterologist’s office told me medication never has gluten in it. Actually she laughed at me when I questioned whether she had verified a medication she was trying to give me had gluten in it and then told me that no drugs contain gluten. She was wrong.
My son’s pediatrician and my pharmacist were shocked to learn some medications do contain gluten.
If you are diagnosed with Celiac or decide to go on gluten free diet for any other reason know that you are going to have to be your own advocate. Know that you will have to do lots of research. Know that you will have to ask lots of questions and educate many people, some of whom will be in the medical field. It is frustrating, and can be exhausting. Right after being in labor for 12 hours, up for over 48 hours in a row, having just had a c-section and trying to learn to nurse was not when I wanted to educate the head of the department that prepares all the patients’ food. But that’s when the opportunity came, so I did.
I have actually found that in questioning medical professionals about being gluten free I can learn quite a lot about them and how they practice medicine.
My son’s pediatrician, who is wonderful, was very receptive to me bringing him information on research studies on Celiac. He also did some research on his own after I told him that some meds contain gluten. When he prescribed meds to my friend’s little boy (who is gluten free) a couple months later he mentioned to her that some meds do contain gluten and to have the pharmacist double check before filling the prescription.
I gave my son’s former gastroenterologist a summary of a research report on introducing gluten to kids who may have the gene for Celiac and he glanced at it, shoved it back at me and told me he would get all the information he needed at a conference that fall. I was pretty surprised because the study was the same information I had asked him about on our last visit, and he had no answers.
The pediatrician listens to patients, learns from patients and does research on things he does not know about. The gastroenterologist does not think patients can bring him any knowledge and that he already knows it all. I know which doc I want to work with and which one needs to go.
