What Do You Know About Celiac Disease?

May is National Celiac Awareness Month

When I first opened Pica Pica, I heard lots of people thanking me for our gluten-free menu (as our main starch ingredients are not wheat but corn, plantains, yuca root and – coming soon – taro root). It turns out that Pica Pica’s Venezuelan-inspired foods are naturally gluten-free and therefore it’s the perfect place for people with Celiac disease or gluten allergies/sensitivities to dine, as there is no risk of cross-contamination – we have no gluten in any of our menu items.

As many of you may know from my prior postings, my grandmother in Caracas suffered from Celiac disease; I remember her agony and her being extremely fearful of going out to eat.  I feel great that Pica Pica offers Celiacs delicious and enjoyable meals in a fun atmosphere and at a modest cost. Since May is National Celiac Awareness Month, I met with my friend Jennifer Iscol of the Celiac Community Foundation of North California to discuss the subject, as well as the booming gluten-free health trend. Here are some excerpts from our conversation, in a Q&A format.  –Adriana Lopez

AL: Jennifer, what is the Celiac Community Foundation of North California, and what is your role with them?

JI: The Celiac Community Foundation of Northern California (CCFNC) is an organization that originated at Stanford as the Celiac Sprue Research Foundation (CSRF). The CSRF board of directors transferred the organization to a small group of community leaders this year and I became president. We are developing a new website at ww.celiaccommunity.org. CCFNC administers Camp Celiac with the Taylor Family Foundation at Camp Arroyo. It also runs North Bay Celiacs (northbayceliacs.org), a support group and community resource network I founded in 2006 for families living with celiac disease, after my son was diagnosed at eight years of age.  CCFNC is an all-volunteer nonprofit organization offering these free public services: 

  • Patient assistance through support groups
  • Medical education for physicians and dietitians
  • Restaurant consultations for developing gluten-free menu options
  • Support for research at medical institutions
  • Public awareness and education events
  • Political advocacy on issues affecting the gluten-free community

The Foundation’s primary work focuses on generating greater public and medical awareness about celiac disease, and offering practical information about maintaining a gluten-free diet. 

AL: What exactly is Celiac disease?

JI: Contrary to popular belief, celiac disease is not a food allergy or sensitivity; it is a chronic autoimmune disease, in which the body attacks healthy tissues in response to eating gluten, which is perceived as a threat.  When gluten, a protein found in wheat, barley and rye, is ingested by a person with celiac disease, it causes inflammation of the lining of the small intestine. Constant inflammation damages the intestine and impedes nutrient absorption. This can cause a cascade of serious health effects throughout the body. Celiac disease is associated with more than 300 symptoms, from gastrointestinal issues (like bloating, constipation, diarrhea, stomach-aches), to “failure to thrive” in children, short stature, unexplained anemia, thyroid issues, fertility problems including miscarriage, bone and nerve damage, and even cancer. However, research indicates that many people with celiac disease are not aware of any symptoms, but damage is still being done internally, risking long term health complications.

AL: How common is it?

JI: In the United States, approximately one in 100 people suffer from celiac disease, but the vast majority is undiagnosed.  Interestingly, about one-third of the total population has the genes for celiac disease. The disease can be triggered at any age by a number of environmental factors, which are a subject of research.

AL: Why has Celiac disease increased?

JI: Celiac disease has quadrupled in the population since the 1950’s.  Scientists do not yet know why, but theories include the “Hygiene Hypothesis” (our hygiene practices suppress the natural development of the immune system in childhood), increased consumption of wheat, and consumption of wheat that has been cultivated over a century to have a higher gluten level. The highest rate of celiac disease in the world was found in a refugee population in North Africa, where Western food aid introduced wheat into the diet of a genetically susceptible population, triggering the disease in five percent of the children.

AL: What does a gluten-free diet look like?

JI: Gluten is a protein that is only found in wheat, rye and barley.  Most edible things are naturally gluten-free, including all fruits, vegetables, legumes, nuts, seeds, animal products (meat, poultry, fish, dairy and eggs), rice, corn and gluten-free grains. A gluten-free diet is healthiest when you get most of your calories from whole, fresh foods in their natural, unprocessed state.  While gluten occurs naturally in very few foods, it is found in a wide variety of processed food products, and can sometimes be a hidden ingredient. A product labeled “wheat-free” may contain non-wheat sources of gluten, particularly barley products such as malt syrup or oats that are not certified gluten-free.

AL: So, are humans not meant to eat gluten?

JI: This is a point of controversy.  Wheat is one of the crops that feeds the world.  Most experts say that people who can tolerate wheat should eat it and enjoy it. Others say that we are risking our health by eating too much of it or any of it at all.

AL: What are the challenges for Celiacs when it comes to dining out?

JI: When eating out food safety is the biggest issue, and that means checking for cross-contact, also known as cross-contamination, at restaurants.  A 100 percent gluten-free restaurant, which is rare, needs to focus on its ingredient list to make sure that all ingredients, including all seasonings, condiments and sides, are free of gluten.  For restaurants offering gluten-free items on a regular menu, the risks for cross contamination are higher. Restaurants need to educate themselves on what it means to advertise a gluten-free menu and make sure they can provide truly safe food for celiacs to eat. There is a wide range of gluten-free diners, from the casually gluten-free to those diagnosed with celiac, and restaurants need to decide whom they are serving on that spectrum. People with celiac disease are advised to communicate with the owner or manager of a restaurant before eating there, even if they advertise a gluten-free menu, to discuss the restaurant’s level of training and commitment.

AL: I know what you mean. We had Pica Pica’s kitchen inspected and reviewed all our ingredients to make sure we had removed all sources of gluten. We even had our arepa corn flour tested by an independent laboratory to make sure it would be safe for Celiacs.

JI: Pica Pica is one of the few restaurants I know of which has made the effort to do that, and our community appreciates it! It is like the “Wild West” for restaurants; there are no gluten-free food service certification and very few requirements by public health officials to implement allergy training. In short, there are very few guidelines that restaurants and customers can follow, which is frustrating for people with Celiac disease, food allergies and intolerances.

AL: That sounds tough, especially for kids who can’t eat in restaurants, school cafeterias, at birthday parties, things like that. Besides those diagnosed with Celiac disease, who else might be interested in a gluten-free diet?

JI: Recent research indicates that about six percent of the population has non-celiac gluten intolerance, which can cause celiac-like symptoms, but without the intestinal damage.  For Celiacs, eating gluten can be truly life-threatening – this is about survival. Non-Celiac gluten intolerance tends to be more about thriving; a gluten-free diet makes full health possible. There are no scientifically validated lab tests for gluten sensitivity, even though there are labs that will try to sell you one. If you think you have a problem with gluten, do not remove gluten from your diet (or your child’s diet) before asking your doctor to test for Celiac disease. You can’t get tested if you are already on a gluten-free diet. If the Celiac test is negative, you can diagnose non-Celiac gluten intolerance by removing gluten to see if you feel better.

AL: What are the benefits to leading a gluten-free diet?

JI: A gluten-free diet is not a weight loss diet. Its purpose is to avoid the protein that might cause illness to some or discomfort to others.  In fact, packaged gluten-free foods can be lower in nutrition than their counterpart wheat products, since most of the gluten-free products are not fortified or enriched.  A gluten-free label on a package does not mean it is “healthy”; it may still be highly processed.  It all comes back to eating a diet based on fresh, natural, unprocessed foods.

AL: What is your dream in regards to the growing awareness of Celiac disease?

JI: To put our foundation out of business!  I hope the medical community becomes so good at diagnosing and treating Celiac disease and providing support, that there will be no need for a grass roots organization to help people understand the disease, and how to treat it and live with it. 

AL: How can someone find out more information about your local resources? Can you suggest other educational resources?

JI: They can go online to our website www.northbayceliacs.org; the resources there will be moving to www.celiaccommunity.org in mid-2012. Our local resources are extensive, including support groups, news, classes, virtual communities, bloggers and the like, to provide a one-stop shop for readers.  We also recommend these excellent sites:

University Celiac Disease Centers:

BACK TO TOP

Michelle - Thank you for your wonderful blog posts. I lived in Venezuela as an exchange student in 1997-98 and really enjoyed the wonderful foods including arepa, cachapa and hallaca. It was only recently that I discovered that I could purchase PAN corn meal here (San Diego) and have been busy making arepas since. :) I hope to visit San Francisco one of these days to try your delicious fare. Thank you for the link to the San Diego UC San Diego’s Wm. K. Warren Medical Research Center for Celiac Disease. I believe my finance may have Celiac disease and we had no idea that this is center was here and he can receive funding. Buena suerte con todos sus esfuerzos en la Pica Pica. Esperamos poder visitar un día.

How to Understand Disease - [...] disease: the bad news, the good newsFast Food Diet Causing Health Epidemic Across the GlobeWhat Do You Know About Celiac Disease? .recentcomments a{display:inline !important;padding:0 !important;margin:0 [...]

Adriana Lopez - Michelle, gracias por tus comentarios y apoyo. We hope to see you in San Francisco in the near future so that you can enjoy some good venezuelan arepas! We also make hallacas in December, that might be a good time to visit :)
Let me know if you have any regarding leading a GF diet. There are a lot of resources out there that can help you find a way of eating well without gluten.

Regards,
Adriana

Your email is never published or shared.