While the best gluten-free diet starts with fresh, unprocessed foods, plenty of great-tasting, gluten-free products are available locally and online. (Photo: Joel St. Marie)
What is gluten and why do so many people need to avoid it?
By Rebecca St. Marie
When I saw a display case at Stellar Brew coffee shop in Mammoth had a sign for gluten-free pumpkin muffins out among a plethora of other baked goods—spiced molasses cookies, cinnamon rolls and strawberry white chocolate croissants, I was both excited and cautious. For other people, the gluten-free sign means little, just another health food fad such as low carb or fat free. Some probably wonder, what does gluten-free even mean?
For me, gluten-free isn’t a fad or a mysterious label, it’s a non-negotiable way of life.
Gluten is actually the general name for sticky proteins found in wheat, rye and barley. For certain people, gluten cannot be digested, triggering an auto-immune response that mows down all the tiny, fingerlike villi in the small intestines that absorb the nutrients from the food and drinks we consume. Without villi, nutrients cannot enter our bloodstream and we become malnourished. Malnutrition then leads to an array of problems. Take out the gluten and, if caught early enough, the villi eventually grow back to absorb nutrients again.
The technical term for this damage that gluten causes is celiac disease.
And, according to Martin Kagnoff M.D., director for the William K. Warren Medical Research Center for Celiac Disease at UC San Diego, I am not alone in the need to be gluten-free. At a recent lecture at the university, he said that an estimated one out of every 100 Americans should be, too. Unfortunately, only a small percentage of them know it, as little as 15 percent. That means 85 percent of the people who have celiac disease have no idea that this may be the cause of their many ailments.
I spent nearly a year suffering from debilitating symptoms, from numbness and tingling in my hands and feet to unexplained high liver enzymes, anxiety, migraine headaches and fatigue, before I learned gluten was the culprit. I have probably been plagued by this disease most of my life—including when I was diagnosed with irritable bowel syndrome in college—but it got significantly worse after two pregnancies and a surgery, which I was to later find out, along with viruses and trauma, are often triggers. I went to five different doctors before celiac disease was suggested. After only a few weeks off of gluten I started feeling better, though long-term healing took a while longer.
Since my symptoms were so varied, diagnosis was difficult, as is often the case. A correct celiac diagnosis takes an average of four years, better than the 9 to 11 years it used to take. Researchers now know that multiple symptoms (as many as 300 according to the University of Chicago’s Celiac Disease Center Web site) from multiple systems in the body can be attributed to this disease. Along with the symptoms I had, other manifestations can include depression, premature osteoporosis, dermatitis herpetiformis, unexplained infertility or miscarriages, abdominal bloating and pain, dental defects, diarrhea, autoimmune thyroid disease, joint pain, iron-deficiency anemia, weight loss (or weight gain) and even short stature and ADHD in children. Some people can have celiac without any symptoms at all. If left untreated, though, celiac can lead to other serious illnesses and even cancer. For now, the only treatment for celiac disease is a completely gluten-free diet for life.
To complicate matters, millions who don’t technically have celiac disease can still be sensitive, or intolerant, to gluten and should also avoid it, though more research is being done to better define and diagnose the disorder and its relation to celiac disease.
What is known is that celiac disease, and possibly gluten sensitivity/intolerance, is genetic, passed down from at least one, sometimes even both parents. While common in European countries, and those of European decent, the disease can be found in any culture that eats gluten (as so many now do). I know I get my gene from my maternal side and that I passed it down to my two children, both of whom are now gluten- free too.
Once thought to be rare or found only in children, celiac disease is on the rise. Why is yet to be determined, but several theories exist, including the increase in consumption of gluten in processed foods. Since being gluten-free is sometimes mistaken as a fad diet, the seriousness of the disease is often overlooked. Shawna McNally M.P.H., R.D., the nutritionist for the Warren Center who also spoke at the lecture, said that as little as 10 mg of gluten, really just a crumb of bread, has been shown to make someone with celiac disease sick. For me, that means at least a few days in bed with my many symptoms all over again.
This was my main concern when I saw that Stellar Brew was offering gluten-free items on the menu. How could I be sure a muffin was gluten free when it sat in a display case right next to gluten items without any protection? And what was going on behind the scenes in the kitchen?
I spoke with Stellar Brew’s kitchen manager, Lauren Jenks, who is gluten intolerant herself, about my concerns.
“That’s something we’ve been talking about a little bit,” she said. “Even the claws that we grab all the products with, the girls don’t even realize about the contamination.”
As of now, their gluten-free muffins and some of the other gluten-free goods share equipment with gluten foods, and, yes, are displayed next to those same items, but Jenks is working to separate the gluten-free food as best she can. Currently, Stellar Brew is one, if not the only, place in town that specifically offers gluten-free food made on site, and I do give them credit for the effort; however, when a restaurant makes and serves gluten-free food alongside gluten foods without taking extreme measures to prevent cross-contamination, I am taking a chance that a bit of gluten may make it into my food.
Since gluten lurks in so many inconspicuous places, salad dressing, soy sauce, restaurant food, even medications and toothpaste, adapting a truly gluten-free diet can be difficult, especially since gluten is never actually listed in the ingredients and instead can be found under many other names, including modified food starch, malt and natural flavors. I have learned to read food labels, make phone calls to companies and stay away from many processed foods. Instead, I eat fruits and vegetables, nuts, beans and legumes, many dairy products, as well as beef, poultry, pork and fish, which are all naturally gluten-free. For grains, I eat brown rice, corn, amaranth, quinoa, buckwheat, teff, millet or sorghum.
In the three years since I went gluten- free, the market has exploded. Most of the products are much more expensive than their gluten counterparts, but they are easier to find and taste better than ever. Still, being gluten-free isn’t easy. My kids and I rarely eat out at local restaurants and we always bring our own food to friends’ houses for dinner or cupcakes to birthday parties. The kids have their own “safe” snack packs at school and don’t get to eat cafeteria lunches. I have had to learn to cook and bake in a whole new way since gluten-free flours are tricky to work with.
With places such as Stellar Brew bringing attention to gluten-free food, it is finally getting more attention in the Eastern Sierra. The Tri-County Fair even had a gluten-free section in this year’s baking competition. Some day, I hope, this way of life may be no big deal, normal even.
What to do if you suspect celiac disease or gluten intolerance:
Talk with a medical professional before going gluten free. A correct diagnosis is important since going on and off of a gluten-free diet can lead to permanent villi damage for someone with the disease. Current protocol for celiac testing is a blood test for antibodies and, if positive, a small intestine biopsy. For those who have already gone on a strict gluten-free diet, a gene test can be done to determine if they carry the DQ2 or DQ8 genes related to the disease. Testing for gluten sensitivity/intolerance usually includes the same blood test as for celiac, but other tests do exist. Some people find they feel better off gluten and don’t need scientific evidence, but consulting a medical professional is always recommended. Go to www.celiacdisease.net/newsletter for the latest research.
Websites/blogs: celiac.org, celiacdisease.net, celiaccenter.ucsd.edu, myceliacid.com, theglutensolution.com, theglutensyndrome.net, glutenfreegirl.com, glutenfreegoddess.blogspot.com, adventuresofaglutenfreemom.com, dishtoweldiaries.com, whattofeedyourkids.com
Books: Cecilia’s Marketplace Gluten-Free Grocery Shopping Guide;
Celiac Disease: A Hidden Epidemic by Peter H.R. Green, M.D. and Rory Jones
Cookbooks: Cooking for Isaiah (Gluten and Dairy Free) by Silvana Nardone;
1,000 Gluten-Free Recipes by Carol Fenster; Gluten Free Girl and the Chef by Shauna James Ahern and Daniel Ahern
Gluten-free products worth buying: Udi’s, Tinkyada, Enjoy Life, Glutino, Bob’s Redmill and Pamela’s Products. King Arthur Flour, only available online in our area, has the best gluten-free equivalent to basic wheat flour that I’ve tried, making it a good transition for the newly gluten free.
Where to buy gluten-free food locally: Holmes Health Haven in Bishop, Manor Market in Bishop and Sierra Sundance in Mammoth all have gluten-free flours, cereals and other well-established products. Vons in Bishop and Mammoth have products as well; look for the gluten-free tag where the prices are listed.
Recipe: Easy Gluten-free pizza
Udi’s gluten-free pizza crust
Enrico’s Pizza Sauce (look for the gluten-free label)
Mozzarella cheese (many dairy products are gluten-free but always be sure)
Applegate Farms Genoa Salami (look for “no gluten or casein added” on the package)
Assemble and bake according to Udi’s package directions.
Serve with a salad of fresh vegetables such as lettuce, tomato, carrots and avocado. Add a gluten-free dressing such as Litehouse Chunky Bleu Cheese (look for gluten free on the label).