In his own words: living with celiac disease

Scott, 35, was diagnosed with celiac disease a few years ago. After making the necessary dietary changes, Scott has been feeling a lot better. Now he is an active supporter of and advocate for others with celiac disease.

What was your first sign that something was wrong? What symptoms did you experience?

My symptoms, which occurred off and on over a period of several years, included diarrhea, stomach pain (especially in the middle-right section while I was sleeping), and abdominal bloating. At first, I thought it was just lactose intolerance.

What was the diagnosis experience like?

I spent a lot of years and money, went through many tests and got any number of misdiagnoses before finding out about celiac disease. I was told I had lactose intolerance, irritable bowel syndrome, an ulcer, kidney problems, and was even told that I could have a strange cancer or a rare form of leukemia. I had CT scans, thyroid tests, screens for bacterial infections and parasites, and gallbladder tests. When I came across a reference to celiac disease in a book on nutritional disorders, I told my doctor, and was finally diagnosed via a biopsy of my small intestine (which was not as bad as it sounds). There are also several blood tests, one of which can give you an answer within 10 minutes.

What was your initial and then longer-term reaction to the diagnosis?

My first reaction was relief. It was great just to have a definitive diagnosis. Sometimes I get frustrated, like when I heard that in Europe people are routinely screened for celiac in time to prevent the kinds of discomfort and frustration that I experienced. Had I not been diagnosed when I was, I would have begun to experience nutritional disorders as my body lost its ability to absorb important nutrients like iron, calcium, and magnesium.

How do you manage celiac disease?

With dietary changes. Celiac disease is an autoimmune disorder in which the body is unable to process gluten—a protein substance found in wheat and most other grains. All I have to do is cut gluten out of my diet altogether.

Did you have to make any lifestyle or dietary changes in response to celiac disease?

Wow—completely. [Gluten is] also in food additives, thickeners and binders, modified food starch, hydrolized vegetable protein, and many other things. Managing the illness is much more complicated than just reading labels. In the US, gluten is not required to be listed as an ingredient—in Europe a “gluten-free” symbol appears on the packaging of safe foods.

Going to a restaurant can be a real adventure. My wife and I have found a handful of sympathetic restaurants that will let me, for instance, bring my own gluten-free bun if I order a hamburger, or gluten-free soy sauce if we’re eating Asian food. But the first few years were frustrating and I often ended up feeling angry when people working in a restaurant knew so little about what was in the food they were serving.

Did you seek any type of emotional support?

My wife has been wonderful. She’s Taiwanese, and in her culture they don’t eat much dairy or wheat anyway, so changing our diet at home has been easier than it otherwise might have been. And our friends have been very adaptive about having us over for dinner. I found a lot of information online, and actually started a web site to try to help people find the information it took me so long to gather myself.

Does celiac disease have an impact on your family?

Yes, some, but as I said, my wife is Taiwanese, and in her culture they don’t eat much wheat anyway, which has made it easier to make our diet safe for me. Our son is at some risk, since the illness has a genetic component, but at 14 months we haven’t seen any sign of problems.

What advice would you give to anyone living with celiac disease?

It’s normal to get depressed when you think about all the wonderful things you can’t eat any more, but it’s just a matter of making that mental adjustment. Also, be careful about what you read on the Internet—most of the information out there is really helpful, but not all of it is as accurate as it should be.