Celiac disease affects one in 133 people

Eating healthily isn't always easy.

But for some people, maintaining a strict diet is critical to their well-being.

Imagine feeling bloated, fatigued and weak and not knowing why. Imagine alternating between diarrhea and constipation while experiencing bone pain and muscle cramps or perhaps premature osteoporosis. Then imagine being diagnosed with irritable bowel syndrome or Crohn's disease, only to be told a few weeks later the diagnosis is incorrect and the doctor still doesn't know what is wrong.

Sequim resident Sue Eliot had such an experience 38 years ago. At 5-foot 8-inches, Eliot was 24 years old and weighed only 86 pounds. She was eating three meals a day but still losing weight and constantly feeling sick.

"I was just wasting away and had to stop working," Eliot remembered. "I was in the hospital for more than a month before they figured out what was wrong."

Eliot has celiac disease, also known as gluten intolerance. The illness is considered one of the most under-diagnosed common diseases today, affecting one in every 133 people in the U.S., according to the Gluten Intolerance Group of North America, which Eliot co-founded.

Celiac disease is a chronic, inherited sickness. If left untreated, the disease can lead to extreme malnutrition.

Gluten intolerance occurs when the human body responds negatively to the ingestion of gluten, damaging the small intestine. Nutrients are passed quickly through the small intestine rather than being absorbed. Common triggers include stress, trauma from surgery or pregnancy and viral infection. The disease is permanent and results in damage to the small intestine even if symptoms aren't present.

Celiac disease, according to the Gluten Intolerance Group, doesn't always present "textbook" symptoms. More often, symptoms mimic other illnesses.

Classic symptoms of celiac disease are diarrhea, bloating, weight loss, anemia, chronic fatigue, weakness, bone pain and muscle cramps.

A Sequim man, who wishes to remain unidentified because of the stigma associated with having a disease, said he was diagnosed with gluten intolerance 10 years ago at the age of 50. He didn't have the traditional symptoms of celiac disease, but instead was congested, coughing and feeling tired for months. A naturopathic doctor instructed him to eliminate gluten from his diet.

"It's very restricting," the man admitted. "(After 10 years) I'm still very allergenic and have to be careful. If I eat too much of the wrong food, I get very congested."

"I'm definitely better than I was four or five years ago, but I'm not like I was in my 20s or 30s," he said sadly.

Eliot said she noticed a difference immediately after starting a gluten-free diet. After four months, she gained 10 pounds.

"The gluten-free diet is very challenging, particularly in the beginning," she warned. "It takes a great deal of education to realize what has gluten and what your body needs to gain its strength back. You can't just cut out wheat - gluten is in a lot of other things."

Individuals on gluten-free diets are advised to avoid wheat, rye, barley, malt or malt flavoring, croutons, flour, cereal products, pastas, marinades, processed lunch meats, soy sauce, stuffing, salad dressing and imitation seafood - to name a few foods. Rice, corn, soy, potatoes, beans, buckwheat and tapioca are allowed, as well as meat, fish, fruits and vegetables.

"Don't cheat," Eliot advised from experience. "This is not an allergy or a vanity diet. If you cheat, you do damage to your body and your health will regress."

Joining a support group is the best thing a recently diagnosed person can do, according to Eliot. "To realize you are not the only one out there dealing with this disease is helpful," she said.

Dining at restaurants can be particularly challenging for a person with celiac disease. Even if the restaurant offers a gluten-free menu item - which most don't, Eliot said - there is the risk of cross-contamination with "regular" food.

After living in Sequim for one year, Eliot said she's found four restaurants that either offer gluten-free items on the menu or are willing to accommodate people with celiac disease: Jeremiah's BBQ, Alder Wood Bistro, Galare Thai and Dockside Grill.

"They need to eat local, good food, too," said Jessica Schuenemann, owner of Alder Wood Bistro, about people with celiac disease. "My mother is gluten intolerant so I am aware of the issue, but I think there are a lot of people who don't realize what it is and how much wheat is in everything."

Alder Wood Bistro offers multiple gluten-free salads and gluten-free lasagna on the main menu. Other dishes are available upon special request.

Sequim restaurants offering gluten-free menu items are encouraged to contact the Sequim Gazette for a free news brief. For more information, call 683-3311 or e-mail

For more information about celiac disease, call Sue Eliot at 360-477-4548 or e-mail

A celiac disease support group

The Kitsap/Olympic Peninsula Gluten Intolerance Group, a branch of the Gluten Intolerance Group of North America, meets in alternating locations. The next meeting is May 24 in Port Townsend, followed by a July meeting in Bremerton and a September meeting in Sequim. New members are welcome. For more information, call director Sue Eliot at 360-477-4548, e-mail or go online to

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