INTERVIEW

Why Going Gluten-Free Is Only the First Step:

Advice From a Nutritionist With Celiac Disease

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When she counsels people with celiac disease, dietitian and nutritionist Melinda Dennis brings to the table particular knowledge and empathy: she herself was diagnosed with celiac disease 20 years ago.

At the time, Melinda lived and worked in Boston as an international educator. Soon after diagnosis, she decided to earn a master’s degree in nutrition and health promotion, and to become a registered and licensed dietitian. Around the same time, she founded what grew into The Healthy Villi. (Thanks, Melinda!)

Today, Melinda is the Nutrition Coordinator for the Celiac Center at Beth Israel Deaconess Medical Center in Boston. She and co-author Dr. Daniel Leffler, also of BI Deaconess, have a new book due out soon, “Real Life with Celiac Disease: Troubleshooting and Thriving Gluten Free.” On the side, through her web site, Melinda provides personalized counseling and coaching, as well as gluten-free wellness retreats. 

Melinda and Dan recently gave the keynote talk at our winter meeting. Afterward, Melinda sat down with The Healthy Villi to talk about how her diagnosis shaped her career, and about the special nutritional needs of people with celiac disease. She also provided copies of the slides from her talk.

Q: When and how were you diagnosed with celiac disease?

Melinda: I was 24 years old, and I was visiting my grandmother in Florida. One morning, I woke up with a rash on my elbows and knees. I was sure it was a yoga-carpet rash that I had contracted at a yoga studio. I went to a doctor in Florida. That dermatologist was ahead of his time because he took one look at me and said, “It’s dermatitis herpetiformis. You have celiac disease.” Of course, I needed an endoscopy to be sure. So, I went back to California, where my parents lived and where our family doctors were. Sure enough, the endoscopy confirmed the diagnosis.

Q: What was your reaction to learning you had to live gluten-free?

Melinda: Well, I seem to remember there were some tears.  (Laughs.) But, for me, it was black-and-white. I said to myself, “This is what you have, and there’s no middle ground. You have to stick to the diet.”

Q: Is that what made you decide to become a nutritionist and dietitian?

Melinda: I was interested in food and healthy eating even before I was diagnosed, but I’m not sure if I would have become a nutritionist if I hadn’t been diagnosed.

Q: What made you realize that nutrition was a key issue for people with celiac disease?

Melinda: I looked at the foods that were available to us at the time and was shocked. They had a high glycemic index, no fiber, no whole grains – and they were expensive. It’s kind of why I became a nutritionist. Because I could help others understand it and help force the issue of the nutritional content of the diet.

Q: How has the subject of celiac disease and nutrition evolved since that time?

Melinda: What has changed is the overall awareness of our diet. Before, it was only, ‘What can I eat?’ Today, we’re a bulging market niche. There are tons of gluten-free products in supermarkets. Restaurants and theme parks are catering to us. There are even entire gluten-free bakeries, mainly on the two coasts. And now, finally, makers of GF foods are starting to address and emphasize the nutritional value of their products.

Q: So, for someone with celiac disease, it’s not just a matter of staying gluten-free?

Melinda: No, it isn’t. Many people with celiac disease don’t understand why they still feel bad after going gluten-free. They need to learn why a daily multivitamin/mineral supplement is such a necessary baseline requirement for most people. People with celiac disease also need to focus on their intake of B vitamins, vitamin D, iron, calcium, and essential fatty acids (such as fish oil), and on eating foods that contain high-fiber grains and that have a low glycemic index.

Q: How would you evaluate the level of nutritional awareness among people with celiac disease?

Melinda: At one end, arepeople  seeking outvitamin supplements, omega-3 sources, healthy grains and exploring ethnic cuisines which often have naturally gluten free foods.  At the other end, arepeople who need convincing that a multivitamin is necessary.  

Q: What can people do to take greater control of their nutritional requirements?

Melinda: Many people don’t know how to analyze their lab results. I tell them not to just accept the letter from their doctor that says, ‘All of your labs are normal.’ Get the actual levels, and compare them over time. If you understand how these levels affect your life, how you feel and your future health, you can manage your diet and care for yourself much better.

Q: Can you give an example?

Melinda: Everyone should know his/her vitamin D level, for example. Low levels of vitamin D can be associated with colon cancer, hormone imbalances, osteopenia, osteoporosis and even low mood.

Q: So, what is the single most important suggestion you would make about nutrition?

Melinda: I hate questions like that.

Q: Okay, the top three most important suggestions. 

Melinda: First, make sure you know your vitamin D levels. The lab test for this is called the 25-OHD test. Based on the results, you should take an appropriate vitamin D supplement (usually with calcium), based on your age, gender, diet and lab value.

Second, choose whole grains – gluten-free, of course – should account for at least half of your daily grain intake.

Third, look for ways to increase your fiber intake by adding fruits, vegetables, nuts, seeds, legumes and gluten-free whole grains – unless, of course, you’re on a fiber-restricted diet.

Fourth, drink water, exercise and don’t smoke.

Fifth, anything you can do to decrease or manage the stress in your life is especially beneficial for people with an autoimmune disease like celiac. That’s because, with an autoimmune disease, your body is always on alert to attack itself.Stress only exacerbates the situation.

Sixth, almost everyone needs a multivitamin/mineral supplement, based on their age, gender and lab values.

Q:  That was more than three suggestions.

Melinda: Yeah, it was. (Laughs.) But they’re all important!

Q: What are some really good sources of dietary information for people with celiac disease?

Melinda: I think Tricia Thompson’s book (“Celiac Disease Nutrition Guide”) is excellent. Also, Shelley Case’s book (“Gluten-Free Diet: A Comprehensive Resource Guide”). I would also suggest the BIDMC Celiac Center website, the Gluten Intolerance Group and the Celiac Disease Foundation.

Q: And how about your own book?

Melinda: Oh, right! (Laughs.) 

Q: Well, we’ll mention the title again: “Real Life with Celiac Disease: Troubleshooting and Thriving Gluten Free.” It’s due in April, right?

Melinda: That’s right. We are really excited – over 50 experts have contributed their work.  

Q: Thank you for talking with us, Melinda!

Melinda: Thank you. It was an enjoyable conversation.

Sticking to the gluten-free diet is only the first step toward eating properly for people with celiac disease, says dietitian and nutritionist Melinda Dennis. She advises that whole grains and high-fiber foods are crucial to eating well, and that vitamin and mineral supplements also are likely to be part of a well-rounded regime. Melinda knows of what she speaks: besides her professional training, she herself has celiac disease.
 
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