Mary, you should reconsider going back on the diet, and following it THOROUGHLY. There are many subtelties about being on the diet that you have to learn, and keeping one’s head in the sand isn’t a good way to resist getting healthy. It is SO WORTH IT to follow the diet, despite the daily obstacles and comments from friends and family who just “don’t get it.”

I was too trusting of my original doctor who told me I had IBS at the age of 23. Now, at 42, coming from New York City, I have learned to use my mouth to my advantage. I speak up when ordering out and ask lots and lots of questions. I find that people don’t know what I’m talking about, so I have to educate them. There are others who have heard of it, but still don’t know about cross contamination. I have to educate them. Then there are those who know what I have, what my dietary restrictions are and are aware of the pitfalls. Those folks are rare, but a true blessing.

I used to schedule dinner meetings around the country for doctors to get educated on HIV disease, and they received continuing medical education credits. Gee, guess what? Those dinner meetings were sponsored by a pharmaceutical company that dispensed drugs for HIV patients! Unfortunately, the bottom line is the bottom dollar.

We all have to “get a little New York” and open our mouths for the injustices about Celiacs who are misdiagnosed.

I contacted the National Foundation for Celiac Awareness and received flyers to distribute to strangers. Whenever I am in a public bathroom and someone is a little sick in the stall next door, I quietly leave a pamphlet on the sink for them to take.

I’m paying it forward, because I only wish someone had opened their big mouth and told me what I had all those years ago.

WHBlog – True – it’s not straight foward to diagnose at all. However, if docs in training are told they might see ONE case of celiac in their career, that’s probably all they’ll see. As Dr. Peter Green says – that becomes a self fulfilling prophecy. You can’t find your celiac patients if you’re not looking for them. So unfortunate…the NIH is doing a lousy job with their education program. Seems they targeted gastro docs and PCP dcos are still not being educated about this condition.

Thanks Amy! I love your blog and I agree about big pharma. Just wait until they come up with some meds and then they’ll have every American thinking gluten is bad for them…lol!

Yael – Glad you’re doing well! I know the U.S. is not the only country that is behind on this issue. Maybe we need a world wide celiac awareness campaign.

“Doctors fumble around” – so true! But with 1 in 100 people having this condition, it should be one of the FIRST things they look for – not the last. A doctor told me after my bloodwork indicated celiac that I could not possibly have it since I was not of Scottish heritage. If I had listened to any of the doctors I encountered – I would not be diagnosed today. I had to fight every step of the way to get diagnosed and I have a rather strong personality. Many people don’t question doctors and go on suffering needessly for years. It’s simply shameful.