• Welcome to my new blog called IAmGlutenfree. How did I decide on this name? Funny you should ask! I have a good friend who is a filmmaker. Her name is Anne Coppel. You can watch her short film which takes just under 5 minutes and you’ll see how I got the idea for the name of my blog. Follow the steps below this paragraph to see the film. If you want, you can copy and paste the directions into a blank word document and print them. Then you can come back to this blog entry, click on the link to Ann’s website, and follow the steps you just printed out. Make sure you’re computer speakers are turned on so you can hear the sound. Seems complicated, but it’s not. And trust me, it’s worth it. It’s a very funny and insightful short film! If you want to view it at another time, scroll down below the directions to where I continue my writing.

    1. Go to her website at
    Ann Coppel Productions.
    2. Click on “I am Ann” in the right column.
    3. Click on Preview in the left column.
    4. Click on “View the short”.
    5. Wait for page to load. Only takes a few seconds.
    6. Scroll down a bit and click on “Seattle International Film Festival 2004: Fly Films 9/16/2004″.
    7. Click on “Seattle: Queen Anne, I am Ann”, directed by Ann Coppel.

    I want to own my new gluten-free life. I am Ellen. I am gluten-free. I am also Ann. Ha! Ha! You have to see the movie short to understand the reference.

    In order for me to really embrace being gluten-free and not attend a pity party, I believe that I need to do everything I can to make it a positive experience. Have there been bumps thus far? You betcha. But I’ve navigated them successfully thus far. My husband has been incredibly supportive. So much so that he insisted we make the entire house gluten-free. I argued with him, but only for a bit. He knows how much easier my life will be if our home can be a safe haven for me. I know that a gluten-free house isn’t possible for everyone, especially when there are others in the house that can eat gluten. Please know that I’m not advocating it for others. However, for me, being completely GF in our house works and will be incredibly helpful as I venture into this new phase of my life. Was I surprised at the degree of Peter’s support? No, he is a mensch of the highest order. I am so lucky to be his life partner and wife.

    I had my first appointment with my nutritionist this past Thursday, Jan. 26, 2006. She is on the staff at Beth Israel Deaconess Hospital in Boston. I loved her from her first question! She asked “Would you like to tell me your Celiac story?” I enthusiastically replied “YES!”. Here is what I told her:

    Several years ago, my hairdresser noticed some significant hair loss behind one of my ears. Because I have short hair, I was very conscious about the hair loss being obvious. I left my hair short for a few years, but then as the hair loss became worse, I decided to let it grow. I went to a dermatologist who was certain I didn’t have Alopecia, which is an auto-immune disease that causes hair loss. About a year later, I went to another dermatologist who said that it wasn’t Alopecia. Meanwhile, Peter took pictures every few months to document the continued hair loss I was experiencing. I returned to the dermatologist again in early 2005. This time, looking at pictures of the continued hair loss, he agreed that it was probably Alopecia. He ordered some blood work. The results indicated that one of my hormones was elevated….and explained that is usually the case with people who have Alopecia. Just a further confirmation of the condition. He told me that I could have cortisone shots in my scalp to stimulate hair growth. I declined. Not ready for such an extreme measure, I instead decided to let my hair grow, something I hadn’t done since high school.

    During the rest of 2005 (through October), I periodically went online and googled Alopecia, trying and hoping to find something that would give me hope that my hair would grow back or at least that the hair loss would not get worse. Finally, I stumbled on a reference to a book called “Dangerous Grains” by Ron Hoggan. I read it and found something that resonated with me. In his book, he talks about Celiac and gluten intolerance, and he mentions the connection between Celiac Disease and other auto-immune diseases, including Alopecia. Bingo! A light bulb went off in my head. My younger sister has Celiac Disease and Hashimoto’s Thyroid Disease. It was the first time since she was diagnosed five years ago that I considered the possibility that I had CD as well. Her gastroenterologist never told her that it was genetic. Now, I’m not a violent person. But frankly, I’d like to fly down to Florida and strangle him. CD IS genetic. If one member of a family has it, there is a good chance that other people in the family have it. My mother, may she rest in peace, exhibited all the symptoms of CD. I’ll bet anything that had she been tested for it, her last few years on this earth might’ve been more pleasant. Not to mention me. The longer you have CD, and the longer it goes undiagnosed, the more likely are your chances of coming down with other auto-immune diseases, and the more difficult it becomes to heal your intestines.

    So, after reading about Celiac Disease in the book
    “Dangerous Grains”, I asked my internist to order blood work to see if I had CD. At the time, I knew far less than I know now. But suffice to say, I had a TTG (tissue transglutaminase antibody test) and it came back positive. Normal is 19 or less. My number was 115, considered moderate to high. My doctor sent me the results, saying that I needed to now omit gluten from my diet. I decided to schedule a follow-up appointment with her. When I saw her a few weeks later, she told me that I didn’t need to have an endoscopy unless I wanted one. I decided not to pursue it, and instead embarked on my GF (gluten-free) life. I did that for one month. At the end of the month, after realizing what a huge and monumental task it was to eliminate gluten, I decided that I needed the confirmation that the endoscopy would give me. I discovered that one of the premier CD specialists in the country practices at Beth Israel Deaconess Hospital, lucky for me. I couldn’t get an appointment for a month, which turned out fine since he wanted me to go back on gluten for at least a month. Otherwise he said that the endoscopy results would not be as accurate as they could be. Reluctantly I went back on gluten. The GI symptoms which I’d experienced for months before returned with a vengeance. Truthfully I never paid much attention to the GI problems (mostly indigestion) I’d suffered with. I figured they were just part of getting older. Duh. Plus I’m not a complainer.

    I had the endoscopy on Jan. 12. That morning, I couldn’t eat before the procedure. Once it was finished, I went GF, this time for good. I don’t remember the doctor talking to me after the procedure, but the nurse told me, once I came out of recovery, that he said my small intestine was scalloped and showed obvious evidence of CD. I didn’t need any more convincing.

    As of today, I’ve been GF again for 14 days. Believe me, I am happy. People ask me if it bothers me that I can’t eat gluten. No way. Why would I want to eat anything that is poison for my system? I ain’t looking back. I will make this work. It won’t always be easy, but as Peter has pointed out often “Nobody said easy was in my contract”.

    I hope you’ll visit again. As this blog develops, I plan on including recipes and pictures of the food I cook. Plus links to websites that have Celiac information on them.

    Until then, be well!

    Best,
    Ellen
    • karina

      Hi Ellen!

      How wonderful to find your blog! May it be an adventure for you, and an inspiration to others.

      Mazel tov!

      Karina

    • Shauna

      Congratulations, Ellen. Your story sounds familiar for so many of us, and you are starting your blog the same way I did! Great work so far. Please let me know if I can help in any way, okay?

    • Caroline

      i think that your positive view on this disease is great. I’ve always felt the same way. My aunt has diabeties and i see that way it really affects her life. Its better than having cancer or something huge like that. Its really an easy disease to deal with

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