I have Celiac what?....and by the way, what in the world is gluten?

In January 2005 I complained to my new doctor that I was extremely fatigued and it was affecting my quality of life. She tested my thyroid and when it came back 'normal', she offered me no other help or ideas as to what was wrong with me. Three months later I was getting my skin cancer check up at the dermatologist when I complained of the fatigue problem. That doctor sent me for an iron level test that day, and rushed the results which showed I was severely anemic. I was put on iron supplements and that was the end of it...for my doctor anyway. No one thought it odd that an otherwise healthy 40 year old just became anemic out of the blue...well except for me, of course.

Over the next few months I was subjected to several invasive tests, including several to rule out various cancers. Finally in January 2006, almost a year to the day after I first complained to my doctor that something was wrong with me, I was finally diagnosed with Celiac Disease (1). It should be noted that two of the three doctors I consulted with on my journey told me that the only positive marker for Celiac (of the six panel blood test) was just a 'fluke'. Since I did not have typical intestinal distress symptoms, I could not possibly have Celiac disease. When the doctor (that I manipulated into doing the biopsy) called with the news that I did indeed have it, he told me I could still eat rice, corn and potatoes and hung up...just like that. I was on my own and had to figure out how to live a gluten free life, in a world full of gluten. It's easy for me now but it's an overwhelming task in the beginning, to say the least.

If it weren't for some strangers on a Celiac message board, who explained that not many doctors know how to recognize Celiac disease in this country, I would probably be undiagnosed today. I'm glad I listened to those cyber friends and risked being labeled a hypochondriac by pressing for answers, until I finally got the correct one. But wait...I was lucky enough to be born in the United States of America...so how is it that I have a disease I've never heard of? And it's easily treated with a gluten free diet (no wheat, rye, barley or oats (2)) so why does it take an average of 9 years for a proper diagnosis of Celiac in the US? What I've learned about that is way too disconcerting to ramble on about here, so I'll just say this. There is at present, no prescription drug to treat my condition. I don't mind since I don't want to take a pill (and certainly not three a day) just so I can eat gluten. But if there ever is such a pill (two companies are supposedly working on one) there will be a $10 million ad campaign blasted on every tv station, which will scare the general public at large into thinking they could have Celiac, or at least gluten intolerance. Gotta love those drug companies....lol!

It is my hope that with this blog, I can help others navigate their own gluten free lives, as easily as possible. More to come...


(1) Celiac Disease affects 1 in 100 Americans, 90% of those affected are undiagnosed at present. To find out if you're one of them visit http://www.celiaccentral.org/.

(2) Regular oats are typically contaminated with wheat, which makes them off limits on the gluten free diet. There are several companies that produce safe, gluten free oats and mine come from http://www.glutenfreeoats.com/. These oats are also available at some health food stores and make fantastic oatmeal raisin cookies!

Comments

  1. Its not just the US, but the UK too, where it can take years to get a diagnosis. It took several months to get a diagnosis for my daughter, but we had a clued up doctor who suspected it from the start. I have read about others for whom it has taken years ...

    How are you getting on with the diet now - after 18 months?

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  2. I'm so glad you got a swift dx for your daughter. Everyone I've met here that came here from Europe is shocked to find out that our doctors don't know about this condition.

    I'm doing great on my gluten free diet - thanks for asking. Actually I'm eating way too many gluten free alternative items...brownies, cookies, pancakes, bagels and even great pizza. My only complaint is that several of my favorite products come from Italy, Israel and France so I feel like I'm single handedly killing the environment with all my UPS shipments. The US needs to step it up and produce a bigger and better selection of gluten free goodies. We have nothing here like the Sainsbury line in London.

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