Monday, April 25, 2011

Gluten-free diet a necessity, not a choice.
An estimated 6 percent of people have gluten sensitivity, the author included.
Date published: 4/22/2011

MY FIRST EXPERIENCE trying to eat gluten-free food at a fast food drive-through was a disaster.
I said “gluten free” into the speaker, and the teen on the other end said, “Nothing is free, m’am.”

Last fall, I was just learning that the issue of gluten sensitivity is not universally—or even scientifically—understood. But today, six months later, new research led by Dr. Alessio Fasano introduces “gluten sensitivity” as a part of a spectrum of gluten related disorders—of which celiac disease is the most well-known.

The identification of gluten sensitivity as a legitimate condition is a big step. It gives hope that more people will start seeing a gluten-free diet as a medical necessity for many of us—instead of a trendy dietary choice.

The Center for Celiac Research at the University of Maryland now estimates that at least 6 percent of the U.S. population, or as many as 18 million people, are gluten sensitive. While not surprising, the fact that this is making headlines is welcome news to those of us who are gluten sensitive.

You can almost hear the collective sigh of relief from gluten-free bloggers and other advocates of a gluten-free lifestyle. In fact, the Wall Street Journal’s recent coverage of the study ends in a quote containing four sweet words: “These people aren’t crazy.”

I wrote of my discovery that I had this condition in my “Mindset” column last fall. Many who have traveled this path before me admit that the biggest part of the struggle has not been changing the diet; it has been explaining the problem to skeptical waiters, family, friends and even doctors.

Celiac disease is an autoimmune disorder of the small intestine that, left untreated, can damage almost any organ in the body. Once thought to be rare, it strikes an estimated one in every 133 individuals.

This was surprising news when Fasano, of the Center for Celiac Research, announced it in 2003. Fortunately, we know what triggers celiac—gluten.
Gluten is a protein that is found in wheat, barley and rye. In celiac disease, exposure to gluten can trigger the autoimmune response, and in turn, the small intestine is damaged.

When a person is on a strictly gluten-free diet, there is nothing to trigger the response, and the small intestine can heal. Not as much is known about gluten sensitivity.
“With gluten sensitivity, we are now where we were with celiac disease 30 years ago,” Fasano said in my recent interview with him.


I found out I was gluten sensitive last fall after visiting six specialists who each had different ideas about what was going on in my belly—which would randomly swell 6 or 7 inches.

With the extreme bloating I also got severe back pain and a general feeling of having the flu. My face would erupt in bright red bumps, and I became increasingly debilitated by the symptoms.

Most of this I tried to conceal, but one day I showed my swollen belly to a girlfriend, who responded: “You have gluten intolerance!”

Ready to try anything, I went completely gluten-free from that moment on. To my surprise, each day I lost one inch of bloating for ten consecutive days, without losing any weight. The morning I awoke after two weeks on a strictly gluten-free diet, I opened my eyes and said out loud, “Wow, I feel great!”

I was energetic again, and my face and mind were clear. The contrast was so extreme I couldn’t believe it myself. I challenged my body several times during the following weeks by consuming gluten intentionally. Each time, I had exactly the same results.

I ate half a buttery roll and two hours later, I looked six months pregnant and felt like I had the flu. It would take a week to recover.

You may know someone who is gluten sensitive and wonder how they can be so sure. It is because we can conduct this kind of personal experiment on our own bodies with reliable results. When our body speaks to us this loudly, we need to listen.

Most of us also know our level of sensitivity. I am very sensitive and needed to remove all gluten from my own kitchen in order to prevent a weekly, unintended exposure. It sounds radical, but it is not unusual. For many, the response can be triggered by just one crumb. According to Fasano, “your system will perceive it like you ate a whole loaf of bread.”

As a practicing psychotherapist, I am eagerly awaiting conclusive information about two illnesses, autism and schizophrenia, where at least a subgroup show improvement on a gluten-free diet. With awareness increasing and so many people facing a potential diagnosis of celiac disease or gluten sensitivity, I look forward to the fact that these people may enjoy, as I did, unexpected healing.

Since the sharing of food contributes so much to our sense of belonging in a community, I look forward to those who are not physiologically gluten sensitive learning to be more psychologically gluten sensitive and respectful of our strict dietary needs.

I like to think of the attitude my brother had during our first Christmas together as we struggled to accommodate my new gluten related restrictions. I was a gluten-free “newbie” and embarrassed about all the necessary label reading, and recipe adjustments.

He simply said: “This is an opportunity to show you we love you, by making this meal safe for you, too.”

I don’t have scientific proof—but I’d call that psychological gluten sensitivity. I think that is on the rise, too.

Dr. Delise Dickard welcomes reader comments and questions. For contact information, see

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