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Ellen’s Story

I am gluten-free, having been diagnosed in November 2005. I had my first appointment with my nutritionist, Melinda Dennis, on 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. Meanwhile, 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, my husband took pictures every few months to document the continued hair loss I was experiencing. I returned to the second 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 this 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 went online periodically 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 for 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 Celiac Disease 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. Celiac Disease 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 Celiac Disease. 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 Celiac Disease, 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.

After reading about Celiac Disease in the book “Dangerous Grains”, I asked my internist to order blood work to see if I had it. 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 internist sent me the results, saying that I needed to omit gluten from my diet. 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 gluten-free life. I did that for one month. Not a speck of gluten that I knew of passed my lips. At the end of the month, after realizing what a huge and monumental task it was to eliminate gluten, I decided that I wanted the confirmation that the endoscopy would give me. I discovered that one of the premier CD specialists in the country, Dr. Ciaran Kelly, practices at Beth Israel Deaconess Hospital in Boston, lucky for me. I couldn’t get an appointment for a month, which turned out to be an advantage, since he wanted me to go back on gluten for at least a month. Otherwise he said that the endoscopy results might not be as accurate as they could be. Reluctantly I went back on gluten. The GI symptoms which I’d experienced before returned with a vengeance. Truthfully I never paid much attention to the GI problems (mostly indigestion) I had suffered with. I figured they were just part of getting older. Little did I know what was going on inside my small intestine!

I had the endoscopy on January 12, 2006. That morning, I couldn’t eat before the procedure. When it was finished, I went gluten-free, 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 gluten-free again for 54 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 my husband has pointed out so often “Nobody said easy was in my contract”.

One of the most challenging parts of having Celiac Disease is eating out at restaurants or at other peoples’ houses. I am still wrestling with this issue. Even when people have lovingly invited me to their house for dinner and have gone to wild extremes to buy and serve gluten-free food, it is almost impossible to expect that they will completely avoid cross contamination. Nor would I really want to ask them to be that careful. I still don’t know how to handle this issue. A good friend of mine who invited us to her house in Pennsylvania for a weekend offered to buy gluten-free food and do whatever she could to help. But truthfully, at this new point in my life, it is easier to bring a cooler with food that I can eat. She is willing to (and I will let her) buy some things that I know I can eat like Stonyfield plain yogurt and fresh fruit (uncut), maybe some Boars Head turkey. And milk for my gluten-free cereal.

I think I’ve had undetected Celiac Disease for many years. While I wish I’d known about it when it first surfaced, this is certainly not a bad time to have discovered it. There are so many foods that are gluten-free, with new ones popping up every day. The health food stores like Whole Foods and Wild Oats, many of which can be found in or near large cities all across the US, and stores like Sure Foods Market in San Francisco make eating at home so easy. And if you know how to read labels, there is a lot of gluten-free food to choose from in the more traditional supermarket. The trick is (here comes the big A-HA!) that you need to always be prepared, whether you’re traveling or at home. I can’t afford to wait to the last minute anymore. I’m much better off if I plan about a week in advance. At the very least, I need my refrigerator and pantry to be well-stocked when we’re home. I’m pretty good at throwing things together last minute, as long as the ingredients are on hand. And I never leave the house without a piece of fruit and at least one or two snack bars.

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 moment. He knows how much easier life can 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 gluten-free 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 (really good guy) of the highest order. I am so lucky to be his life partner and wife. Together, I know we can make this new lifestyle work!

You can visit Ellen’s blog Gluten Free Diva.