Celiac Sufferer Helps Educate About Immune Disorder
Ani Brenes had been suffering from anemia and intestinal problems all her life. But it wasn’t until the acclaimed Costa Rican writer and educator turned 50 that she was diagnosed with celiac disease, a condition also known as gluten intolerance.
The lifelong digestive disorder is set off by eating foods containing gliadin, a gluten protein found in wheat, rye, barley and oats.
“Since celiac disease damages the lining of the small intestine, my body could not absorb nutrients adequately,” says Brenes, now 58, who also suffers from osteoporosis and hepatic problems. “The sad truth is that so much time had passed, and the devastating condition, which I inherited from the father’s side of my family, had already damaged my health irrevocably.”
While classically an illness of infants, celiac disease (CD) can affect people of all ages. The immune disorder is triggered by an environmental agent – the gliadin component of gluten – in genetically predisposed people. Because CD can mimic other intestinal illnesses, the problem is often misdiagnosed. To diagnose celiac disease unequivocally, antibody tests via blood screening, in combination with a biopsy of the small intestine, have to be performed.
“After being diagnosed with celiac disease, I was somehow happy to (finally) know my adversary,” Brenes says. “And since lifelong abstinence of wheat gluten is my only weapon to fight it, I had to learn from the beginning how to live a gluten-free life.”
At the time Brenes was diagnosed, in 2002, information on CD was virtually absent in Costa Rica, making it difficult for her to research the illness. Wanting to help others avoid a similar fate, Brenes five years ago founded the Asociación Pro-Personas Celíacas (APPCEL), the first and only celiac support group in the country. The association aims to raise knowledge and understanding of CD among Costa Ricans, as well as to support impoverished celiac patients.
In the association’s bimonthly online magazine, Brenes gives reliable up-to-date information in Spanish on issues related to the illness. Main topics include testimonies of celiac patients, the omnipresence of wheat gluten in the western diet and gluten-free recipes.
“APPCEL informs and educates,” Brenes says. “We are authorized by Costa Rica’s Education Ministry to give lectures in public schools, especially when there are children affected by the disorder.”
To convey the rather abstract topic of gluten intolerance to first-graders, Brenes, a prizewinning writer of children’s literature, created a child-oriented puppet show.
Moreover, the association’s honorary co-workers are taking celiac patients and their caretakers on tours to supermarkets to introduce them how and where to shop for gluten-free foods. Cooperating with parliament members, who are either celiac patients or have family members suffering from the disorder, APPCEL promotes a bill declaring CD of national interest. The action group also wants to include gluten-free product labeling in the constitution and tax exemption for the products in question.
Brenes says treatment of celiac disease begins with dietary counseling. Because gluten is present in a variety of foods commonly used in the western diet, consumption of a gluten-free diet requires a major lifestyle change. Gluten-free products are usually more expensive and harder to find than common gluten-containing foods. Brenes also warns that the use of gluten as a food additive in the form of a flavoring, stabilizing or thickening agent makes it difficult to select appropriate products for celiac patients. People wishing to follow a completely gluten-free diet must also take into consideration that toothpaste, medicine and even cosmetics can contain traces of it.
“Celiac patients have to be good readers,” Brenes says. “To us, it is vital to investigate products before use and keep strict dietary standards.”
She also stresses that untreated celiac disease can cause irreversible health damage and is associated with a host of severe illnesses, ranging from diabetes and lupus to a blistering skin condition known as dermatitis herpetiformis.
The good news for celiac patients is that there are still many basic foods allowed in a gluten-free diet, including fresh fruit, vegetables, most dairy products, meat, seafood, eggs and unprocessed condiments. Several grains and starch sources are considered acceptable for celiac patients. The most frequently used are corn, potatoes, rice and manioc.
“The gluten-free diet is a rich and healthy one,” Brenes concludes.
Brenes says gluten-free products are available in Costa Rica mainly at Little Israel and Bio Salud stores in Multiplaza Escazú on the west side and in Curridabat’s Plaza del Sol on the east side. Auto Mercado supermarkets sell imported pasta and confectionery. Tin Jo and Limoncello restaurants, both in downtown San José, offer gluten-free meals.
For more information in Spanish, call Brenes at 2273-3559; for English, call her husband, Robert Wells, at 2273-9573. APPCEL’s Web page is at www.proxima.co.cr/asociacionceliaca.
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