As I navigated Marin’s gluten-free landscape, my journey took an intestinal tract’s worth of twists and turns. Some refer to themselves as ‘gluten intolerant,’ some claim to be ‘gluten sensitive.’ And then there are those who have true Celiac disease, a severe autoimmune condition requiring a completely gluten-free diet.
Gluten, the common name for proteins in all forms of wheat (including spelt, durum, semolina, kamut and faro) and related grains, rye, barley and triticale, is what gives bread its tooth and structure, and bagels and pizza their chewy density. If the bread, pasta and baked goods aisles of Whole Foods, and local farmer’s markets are any indication, ‘gluten free’ is the new healthy.
Anti-gluten activists will encourage all of us to avoid products containing gluten, which they refer to as a ‘glue that sticks up the system’ that may be responsible for such conditions as rheumatoid arthritis and chronic fatigue syndrome. However, there is more than a bread box full of uncertainty as to what constitutes ‘gluten sensitivity’ and how bad the gluten protein really is for those of us who don’t have true Celiac disease.
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How do I know whether gluten is harming me?
While people may have a legitimate, bad reaction to gluten, this is not an indication that they have Celiac disease, according to Kentfield-based dietician Ann Del Tredici, who estimates that one in one hundred people have the disease.
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“Unfortunately, the most common symptom of Celiac is most often – nothing,” says Del Tredici, explaining that Celiac quietly wreaks havoc on the small intestine, without the patient having a clue. When someone with Celiac disease eats gluten, an autoimmune reaction is triggered that damages the tiny hair-like villi on the small intestine, rendering the intestine incapable of absorbing crucial nutrients like proteins, carbohydrates, fats, vitamins and minerals.
“Celiacs don’t die from wheat consumption,” says Del Tredichi. Rather, the failure of the intestine to absorb nutrients leads to such chronic diseases such as osteoporosis, growth failure, anemia and even neurological problems.
While many symptoms are silent, Celiacs may experience reactions such as abdominal pain and diarrhea if they consume gluten, according to Greenbrae gastroenterologist Timothy Sowerby, who explains that Celiac patients are “exquisitely sensitive to even small amounts” of the protein. (About five percent of those with irritable bowel syndrome or IBS are thought to have celiac, according to Sowerby, who advises those with ongoing digestive problems get tested.)
Ironically, while an increasing number of people are diagnosing themselves with ‘gluten sensitivity,’ those with true Celiac disease may have no idea that they have it, says Del Tredici. “Celiac has become an out of control, stylish disease,” she says. In her practice, she is seeing an increasing number of people who claim that they can’t eat gluten but “truly have no problem.”
More seriously, there are those who have no concept at all that they are reacting to gluten.
Testing for Celiac Disease
People with Celiac disease have abnormally high levels of certain autoantibodies (proteins that react against the body’s own cells or tissues) in their blood. To diagnose Celiac disease, doctors will test blood for high levels of anti-tissue transglutaminase antibodies (tTG) or antiendomysial antibody (EMA). If test results are negative but Celiac disease is still suspected, additional blood tests may be needed.
Sowerby attributes Celiac’s current ‘popularity’ in part to the number of available blood tests, but maintains that only the anti-tissue transglutaminase tTG and EMA are reliable.
(A word of caution: these blood tests are useless if one is on a gluten-free diet, as damage to the small intestine will heal within weeks of gluten being removed from the system and antibody levels will decline as well.)
The gold standard for diagnosing Celiac, says Sowerby, is to perform an endoscopy, in which a thin, flexible tube called an endoscope is inserted down the esophagus and into the stomach and the small intestine in order to biopsy the tissue. (Learn more about endoscopy here).
Celiac is genetically based, and common in those of Irish and Western British Isles ancestry, according to Sowerby. Because it is inherited, experts advise that if a parent is diagnosed, their children should be tested for the disease (and likewise, if a sibling is diagnosed, their siblings should be tested).
Gluten sensitivity is not the same thing as Celiac disease.
And here is where it gets tricky. An increasing number of people are claiming to be ‘gluten sensitive,’ a fact that is driving a product-packed gluten-free market and some fear, confusing the issue of true celiac disease.
“If someone says they eat gluten and they don’t feel well, we say they are ‘gluten sensitive,'” says Sowerby. “This is a very vague medical term; like ‘beans give me gas’ or ‘fatty food gives me diarrhea.’ They feel bad if they eat gluten. We don’t know why they do – but there is no demonstrable damage to the gastric tract going on.”
While some also use the term ‘gluten intolerant,’ Del Tredici emphasizes that “gluten intolerance is actually another name for Celiac disease” and shouldn’t be confused with gluten sensitivity.
Despite this distinction, a growing population in Marin thinks gluten is far more damaging than we know.
“Even for healthy, ‘normal’ systems, I would never call gluten a good thing,” says Sheila Wagner, co-founder of the only California branch of the Gluten Intolerance Group of North America.
Questioning the current diagnostic parameters for Celiac disease, Wagner claims that there are a plethora of conditions from strange rashes to restless leg syndrome, infertility and just plain malaise that may be related to gluten intolerance and gluten sensitivity, and believes that some people may even have Celiac disease without showing the genetic marker for it.
“The gut-brain connection is huge,” says Wagner, a physical therapist and certified nutritionist. “The autoimmune responses that come from the digestive tract are significant.” Calling wheat a “highly inflammatory, immune-reacting food,” Wagner believes that it triggers an immune reaction that impacts such crucial functions as pancreatic health and the myelin in our brains (the fatty ‘insulation’ responsible for brain signaling).
Wagner also asserts that wheat germ is high in a “sticky picky” sugar-binding protein called lectin, which can glom onto tissue and ‘agglutinate it,’ making cells stick together. What’s more, she adds, gluten produces a ‘morphine like’ substance in the blood that has a mood altering, opiate effect, making it “very addictive.”
Says Del Tredici, “If intolerance is going on, it should be able to be shown immunologically. The number of antibodies in the blood should be elevated. “ She also discounts the idea of gluten as ‘glue,’ suggesting that if you bake bread, you know that “it’s the starch that’s gooey – not the gluten!”
More concerning still is the fact that the FDA does not currently regulate gluten-free labeling. The rise in attractively packaged and ever better tasting gluten-free products poses a dangerous downside to this diet trend. For someone with true Celiac disease, mislabeled or improperly manufactured products can be extremely dangerous. Celiac sufferers and other advocates are pressuring the FDA to regulate gluten labeling, but, for now, many foods claiming to be ‘gluten free’ in fact often come into contact with some gluten.
(A more complicated problem still is called ‘cross-reactivity’ in which a food that does not contain gluten (milk, for instance) acts like gluten in the body.)
What to Eat
Even for those without diagnosed celiac disease or gluten sensitivity, going gluten-free has its drawbacks. Some, including Del Tredici, argue that the trend is causing consumers to self diagnose and alter their diet in ways that may be less than healthful. “The one big difficulty is getting enough carbohydrate,” she says, noting that carbohydrates function to form liver and muscle glycogen, which helps to regulate sleep, curb cravings, maintain blood sugar, provide energy and maintain stamina. Without enough carbohydrates, the body will dip into much needed protein stores to create glucose for energy, rendering the protein unavailable for such crucial functions as building tissue, muscle and bone. “Blood-sugar balance and all kinds of functions can change,” says Del Tredici.
If you are going gluten-free and do not have Celiac disease, less-refined wheat products are best, according to Del Tredici. She lists sprouted wheat breads, potatoes, brown rice, ancient grains such as faro, quinoa and amaranth and adds that “spelt is not gluten free.”
For those with celiac disease, she recommends brown rice, corn, potatoes and quinoa along with gluten-free versions of wheat products, such as rice or soy noodles, gluten-free breads, corn chips and anything potato-based.
“You can still have a healthy diet and not eat wheat,” says Sowerby. “Think of rice-dependent populations. They do fine.”
In Marin
Marin’s gluten- free resources include a grocery store entirely devoted to the gluten challenged. The sister-brother team of Marisa and Chad North have opened Sans, a one-stop shop for reliable gluten-free products as well as education and support. The Norths, both of whom are gluten intolerant, opened the store because they found themselves running all over town looking for the foods they could eat.
“Gluten free-ers are always on the hunt,” says Marisa, noting that they had a customer from Placerville the other day. The store has a kitchen, and they will soon be serving fresh, grab-and-go meals. Weekly ‘Fresh Fridays’ feature local gluten-free breads, hand-made pasta, muffins and even birthday cakes.
Among their featured bakeries is Flour Craft, whose owner, Heather Hardcastle, has the goal of making “delicious food, not just good gluten-free food.” Among her favorite creations: “a rich, but light gluten-free earl grey tea cake” and a “roasty, crunchy granola with just the right blend of sweet and salty.”
With such delights in the offing, Marin’s gluten-free trend seems here to stay – at least for the moment. “There was the raw food claim, the diets involving cleansing …” says Sowerby. “They come in waves; gluten is the current one. But I’m less bothered by it because one can do fine on a gluten-free diet.”
“But,” he adds, “most who say they are Celiac truly are not. Gluten-free is a radical change in lifestyle, so I wouldn’t prescribe it unless one has true disease. The true Celiac has to be obsessive, and most are not willing to do it.”
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