A Big Apple Guide for People with Celiac Sprue and Others on a Gluten-Free Diet
Besides being stubbornly independent, GFNYC tries to be accurate and up-to-date, but feels obligated to offer this disclaimer: None of this information is medical advice. Also, GFNYC cannot take responsibility for errors or misinformation that might appear here. GFNYC encourages all readers to confirm information to their own satisfaction.
Top kayaker Glenn Singleton and Olympic marathon runner Kate Smyth were athletic ambassadors for Australia's Coeliac Awareness Week 2009 (featuring mascot MOJO, right).
Singleton [PDF] experienced fatigue, gastrointestinal problems, sporadic anemia, and nutritional deficiencies before his general practitioner ordered the tests that led to his diagnosis and subsequent adoption of a gluten-free diet. Since then, Singleton says, he has experienced improved well-being and improved his time by a whopping 15 seconds.
Smyth [PDF] says she improved her marathon time by nearly six minutes after getting the tests that led to adopt the gluten-free diet that relieved her lethargy, bloating, chronic anemia, and nutritional deficiencies.
Lauren Cox's ABC News story "Top 10 'Yuppie' Conditions" (December 17, 2008) has a lousy headline that encourages readers to think of the 10 conditions as (air-quote) "conditions" and a poor sub-headline that seems to confuse "Wheat Allergy or Celiac Disease or Gluten Allergy"—but beyond that, I guess it's all right.
Cox offers "10 of the most besmirched conditions patients wish would be taken more seriously," starting with a section on celiac disease even though that darn sub-headline also mentions allergies.
The article cites Elaine Monarch of the Celiac Disease Foundation (CDF) to the effect that "in 2004 the National Institutes of Health convened a consensus conference about celiac disease. The doctors estimated that 97 percent of people who have it have not been diagnosed, and that one out of 133 people likely had the condition." Okay. And it also quotes Dr. Alessio Fasano (who has a personal interest in research and development) as saying, "It deserves all the respect that we give to the other diseases that we spend so much time and money on." Also okay, despite the lack of disclaimer.
But besides better headlines, something that would actually have helped earn respect for celiac disease would have been a more coherent presentation that conveys the costs of celiac disease going underdiagnosed. Cox might even have noted that testing for celiac disease might help people with at least four of the other nine "Yuppie" conditions:
'Yuppie Flu' or Chronic Fatigue Syndrome* Epstein-Barr Social Phobia and Social Anxiety Disorder* Tennis Elbow Anxiety vs. Generalized Anxiety Disorder Restless Leg Syndrome Irritable Bowel Syndrome* Seasonal Affective Disorder Fibromyalgia*
The Institute of Food Technologists (IFT)—a nonprofit scientific society with 22,000 members working in food science, food technology, and related professions in industry, academia, and government—continues to recognize gluten-free food products as increasingly significant factors in food marketing in the United States.
The term "functional foods" refers to foods that may provide a health benefit beyond basic nutrition. The article, which describes the most promising trends in terms of food marketing, forecasts growth in the gluten-free market, notes significant shopper interest in gluten-free products, and notes that "gluten-free" is among the top 10 health claims found in U.S. menus.
References to the gluten-free food market come up under Trend 8: Sensitivity Training, a discussion of consumer concerns about food sensitivities. The discussion begins with an overview:
The number of adults who perceive that they, or their children, suffer from food allergies, intolerances, and sensitivities continues to grow, creating lucrative markets, disproportionate to their true medical base. One in five (20%) of U.S. adults say they have a food "sensitivity;" 28% of parents report their child is afflicted (Mintel, 2007d).
With 70 million Americans suffering from digestive ailments, sensitive tummies represent an enormous functional food opportunity (NIDDK, 2007). Over one-third (37%) of consumers are very/extremely concerned about gastrointestinal (GI) issues, up 6% in the last two years (HealthFocus, 2007)....
Sloan goes on to portray gluten-free products as a growth industry and a significant concern among shoppers.
Gluten-free products are projected to grow from $870 million to $1.7 billion by 1010 (Packaged Facts, 2007b). In 2007, 16% of shoppers checked the label for gluten (FMI, 2007). Hain Celestial Group's new gluten-free line of frozen meals is fortified with the nutrients commonly deficient in gluten-free diets and has a prebiotic [sic] to aid digestion. Allergy Friend Foods LLC's Allergaroo entrees—free of all of the eight major allergens—come in shelf-stable microwaveable pouches in spaghetti, chili mac, and other flavors."
Regarding the menus, Sloan notes that "Vegetarian, vegan, low-carb, low-fat, gluten-free, light, organic, trans fat-free, natural, healthy, and low-calorie are the top 10 health claims on menus (Mintel Menu Insights, 2008)." As far as I can tell, that reflects a huge change over the past 5-10 years.
Also of interest: The article also states that "With almost 12 million men having low bone mass and 2 million with osteoporosis, a male bone-health market is fast approaching...." (Osteoporosis is common among men with undiagnosed celiac disease.)
And "Energy was the top reason consumers made a dietary change last year (Roper GfK, 2007)." (Fatigue is one of the most common symptoms among people with undiagnosed celiac disease.)
Wednesday, December 05, 2007
GLUTEN-FREE LIVING LICKS STICKY SUBJECTS
I'm still making my way through the latest issue of Gluten-Free Living (Fall 2007), but it already strikes me as a keeper. I'm going to try to go over some of the highlights while not stepping on too many toes, and also take note of an opportunity to save on future issues of the magazine.
As you might recall, Gluten-Free Living has been in the forefront of using research to debunk myths about eating gluten-free, such as the unsupported fear of distilled liquor and most vinegars. In this issue of Gluten-Free Living, associate editor Amy Ratner investigates the issue of gluten in envelope and stamp glue. After contacting envelope glue manufacturers as well as the United States Postal Service, Ratner finds that both types of glue are gluten-free. So, if you're still using snailmail, worry no more about winding up like George's fiancée Susan on Seinfeld!
Elsewhere in the magazine, Ratner also covers opinions about the continuing issue of "gluten free" labeling. (I tend to concur with Bruce Ritter of Elisa Technologies, who favors identifying specific test results, such as "Contains less than 5 ppms of gluten," rather than simply using blanket statements such as "gluten free" or "low gluten," which are recommended by food industry interests including General Mills, as Ratner reports.)
Which brings me to the money-saving opportunity. The cost of the magazine is due to go up to $34/one year or $56/two years starting on January 1, 2008, so there's still time to subscribe at the current rate of $29/year or $49/two years. Supporting Gluten-Free Living supports its journalistic research, which plays an important role in addressing the day-to-day needs of gluten-free people. You might even want to bring the publication to the attention of area libraries that could add it to their holdings.
Thursday, October 25, 2007
CNN REPORT
Here's a YouTube video of Heidi Collins's substantial October 15, 2007 CNN Newsroom overview of celiac disease featuring Georgetown University gastroenterologist Dr. Aline Charabaty, who talks about the range of symptoms (which can include diarrhea, bloating, fatigue, anemia, depression, malnutrition, infertility, osteoporosis, joint pains, abdominal pain, neurological disorders, non-Hodgkin lymphoma, gastrointestinal malignancies, and weight and growth problems), the fact that celiac disease can manifest at any age, difficulties in raising research money, and the presence of gluten in many items including some pharmaceuticals.
Written by Anne Underwood, the piece begins with the story of Alice Bast, founder of the National Foundation for Celiac Awareness (NFCA). She suffered fatigue, migraines, depression, weight loss, hair loss, dental problems, GI symptoms, and tingling in the extremities as well as a traumatic failed pregnancy before she received her accurate celiac diagnosis—after seeing nearly two dozen doctors.
The article refers to Dr. Alessio Fasano's 2003 estimate that about 3 million Americans (1 in 133) have celiac sprue, but notes that the condition "remains vastly underdiagnosed." It mentions that symptoms (such as anemia, osteoporosis and failure to thrive in young children) can go well beyond the digestive tract, and offers an explanation as to why Dr. Peter Green (pictured) would say, "Name the organ, and celiac disease can affect it." Underwood writes that, in response to gluten, the immune system in an affected individual "generates antibodies to an enzyme called tissue transglutaminase. This enzyme is an innocent bystander that acts on gluten in the lining of the intestine. But because the enzyme is also found throughout the body—in the skin, heart, thyroid, bones and nervous system—antibodies that attack it can direct their fire at any of these other organs, too."
Underwood emphasizes that the longer someone with celiac sprue remains untreated, the more problems are likely to develop, and also makes the point that, among autoimmune conditions, celiac sprue is one of the easiest to treat, as it involves maintaining a diet instead of undergoing surgery or treatments. (See this post for information about people who were diagnosed with celiac sprue and then mistakenly told they could safely eat gluten.)
The article also asserts that maintaining the diet is easier than ever due to the creation of new products and the rising number of restaurants offering special, gluten-free menus. Mentioned are the Outback and Carrabba's chains, with Risotteria scoring a photograph and Bistango depicted as the site of a lunch between Heidi Collins (pictured) and Celiac Chick Kelly Courson. Each restaurant is part of the nationwide Gluten-Free Restaurant Awareness Program (GFRAP), which, I'm sorry to note, is not recognized in the article.
The article ends with a mention of honeymooning blogger Shauna James Ahern and a description of her forthcoming book Gluten-Free Girl as "a delightful memoir of learning to eat superbly while remaining gluten-free." According to Amazon, the book will be out on October 5, 2007.
ADDENDUM People seeking more information about celiac sprue may find the following links useful:
Most Americans with celiac sprue have not yet been diagnosed. They're out there among us—possibly experiencing any number or combination of symptoms such as fatigue, anemia, heartburn, osteoporosis, skin conditions, and gastrointestinal problems—perhaps not even suspecting that their health could improve dramatically on a gluten-free diet.
Also out there is a subset of people who have been diagnosed and successfully put on a gluten-free diet but later told by a physician that they could then eat gluten safely. It seems that this was a trend among doctors who mistakenly thought that celiac sprue was an "infant disease" that permanently subsided after the patient went on a gluten-free diet. Regardless of how healthy they feel today, those misinformed people should consult with an informed physician who can investigate the validity of the original diagnosis, because celiac sprue remains a lifetime condition, whether or not symptoms are apparent.
I've put together a nifty video on the subject—with Bob Dylan's help! Check it out—if you experience technical difficulties, just try again later.
Friday, August 03, 2007
MEET MEGAN FROM MELBOURNE!
Friendly vlogger Megan (a.k.a. jewelchic) from Melbourne suffered from fatigue, canker sores, and severe weight loss before she got her celiac (a.k.a. coeliac) diagnosis and went gluten-free. She was tested after her mother had gotten a diagnosis a year earlier.
Available on PDF, the article--"Are You the One?"--cites nationally recognized research to establish how nearly 3 million Americans are estimated to have undiagnosed celiac disease, then states
A study by one nationwide celiac disease support group* indicated that among adults ultimately diagnosed with celiac disease, 9 percent were orginally diagnosed with fibromyalgia and 30 percent with IBS. Since many patients with CD have muscle aches, joint pains, GI symptoms, and fatigue, it is understandable that those people might get a label of fibromyalgia.
In addition to the tender points exam, the diagnosis of fibromyalgia is based on a number of symptoms that can be due to other conditions--celiac disease among them. This is further evidence that different so-called "silent" symptoms need to be taken seriously by physicians and thoroughly evaluated before a diagnosis of fibromyalgia (or IBS) is given.
People diagnosed with celiac disease typically experience greatly improved health when excluding wheat, barley, and rye from their diets. Diagnostic testing for celiac disease should, however, take place while one is still eating those foods.
HOW DOCTORS DIAGNOSE Warning: This is a long post. Good luck!
Dr. Jerome Groopman's new book, How Doctors Think, has been getting a lot of attention lately. The CBS Evening News, which covered it last Friday, plans to follow-up on it this week at its website.
One of Groopman's concerns is the diagnostic stage of the patient-doctor relationship. He estimates that doctors tend to give patients a meager 18 seconds to tell their stories before cutting them off. He also figures that "Fifteen to 20 percent of all people are misdiagnosed in the United States." Noting that "In half of those cases it causes serious harm — and sometimes death," he says that it's time for a "national conversation." Part of that conversation clearly should include celiac diagnostics, since (if I'm figuring correctly) people with celiac disease seem to account for about six percent of all misdiagnosed/undiagnosed Americans.
The introduction to How Doctors Think illustrates the ramifications of one misdiagnosis compounded many times over a series of years. It is a case study of a thirtysomething woman Groopman calls Anne Dodge. Here are some excerpts, picked up from the NPR website:
Around age twenty, she found that food did not agree with her. After a meal, she would feel as if a hand were gripping her stomach and twisting it. The nausea and pain were so intense that occasionally she vomited. Her family doctor examined her and found nothing wrong. He gave her antacids. But the symptoms continued. Anne lost her appetite and had to force herself to eat; then she'd feel sick and quietly retreat to the bathroom to regurgitate. Her general practitioner suspected what was wrong, but to be sure he referred her to a psychiatrist, and the diagnosis was made: anorexia nervosa with bulimia, a disorder marked by vomiting and an aversion to food....
Over the years, Anne had seen many internists for her primary care before settling on her current one, a woman whose practice was devoted to patients with eating disorders. Anne was also evaluated by numerous specialists: endocrinologists, orthopedists, hematologists, infectious disease doctors, and, of course, psychologists and psychiatrists. She had been treated with four different antidepressants and had undergone weekly talk therapy. Nutritionists closely monitored her daily caloric intake.
But Anne's health continued to deteriorate, and the past twelve months had been the most miserable of her life. Her red blood cell count and platelets had dropped to perilous levels. A bone marrow biopsy showed very few developing cells. The two hematologists Anne had consulted attributed the low blood counts to her nutritional deficiency. Anne also had severe osteoporosis. One endocrinologist said her bones were like those of a woman in her eighties, from a lack of vitamin D and calcium. An orthopedist diagnosed a hairline fracture of the metatarsal bone of her foot. There were also signs that her immune system was failing; she suffered a series of infections, including meningitis. She was hospitalized four times in 2004 in a mental health facility so she could try to gain weight under supervision.
To restore her system, her internist had told Anne to consume three thousand calories a day, mostly in easily digested carbohydrates like cereals and pasta. But the more Anne ate, the worse she felt. Not only was she seized by intense nausea and the urge to vomit, but recently she had severe intestinal cramps and diarrhea. Her doctor said she had developed irritable bowel syndrome, a disorder associated with psychological stress. By December, Anne's weight dropped to eighty-two pounds. Although she said she was forcing down close to three thousand calories, her internist and her psychiatrist took the steady loss of weight as a sure sign that Anne was not telling the truth.
Yes, I know you know what Anne's real condition is. I figure you figured it out in about 15 seconds. But it took Anne 15 years and consultations with about 30 different doctors before she finally got an accurate diagnosis of celiac disease from Dr. Z. Myron Falchuk of Beth Israel Deaconness, where Groopman also works.
Slow diagnoses--of, say, nine or ten years after worrisome manifestations come to the attention of a doctor, are common among people with celiac disease.
Falchuk, a gastroenterologist with a specialty in celiac disease, discussed his diagnosis of Dodge with Groopman.
"She was emaciated and looked haggard," Falchuk told me. "Her face was creased with fatigue. And the way she sat in the waiting room — so still, her hands clasped together — I saw how timid she was." From the first, Falchuk was reading Anne Dodge's body language. Everything was a potential clue, telling him something about not only her physical condition but also her emotional state. This was a woman beaten down by her suffering. She would need to be drawn out, gently....
Falchuk ushered Anne Dodge into his office, his hand on her elbow, lightly guiding her to the chair that faces his desk. She looked at a stack of papers some six inches high. It was the dossier she had seen on the desks of her endocrinologists, hematologists, infectious disease physicians, psychiatrists, and nutritionists. For fifteen years she'd watched it grow from visit to visit.
But then Dr. Falchuk did something that caught Anne's eye: he moved those records to the far side of his desk, withdrew a pen from the breast pocket of his white coat, and took a clean tablet of lined paper from his drawer. "Before we talk about why you are here today," Falchuk said, "let's go back to the beginning. Tell me about when you first didn't feel good."
For a moment, she was confused. Hadn't the doctor spoken with her internist and looked at her records? "I have bulimia and anorexia nervosa," she said softly. Her clasped hands tightened. "And now I have irritable bowel syndrome."
Falchuk offered a gentle smile. "I want to hear your story, in your own words."
Anne glanced at the clock on the wall, the steady sweep of the second hand ticking off precious time. Her internist had told her that Dr. Falchuk was a prominent specialist, that there was a long waiting list to see him. Her problem was hardly urgent, and she got an appointment in less than two months only because of a cancellation in his Christmas-week schedule. But she detected no hint of rush or impatience in the doctor. His calm made it seem as though he had all the time in the world.
So Anne began, as Dr. Falchuk requested, at the beginning, reciting the long and tortuous story of her initial symptoms, the many doctors she had seen, the tests she had undergone. As she spoke, Dr. Falchuk would nod or interject short phrases: "Uhhuh," "I'm with you," "Go on."
Occasionally Anne found herself losing track of the sequence of events. It was as if Dr. Falchuk had given her permission to open the floodgates, and a torrent of painful memories poured forth. Now she was tumbling forward, swept along as she had been as a child on Cape Cod when a powerful wave caught her unawares. She couldn't recall exactly when she had had the bone marrow biopsy for her anemia.
"Don't worry about exactly when," Falchuk said. For a long moment Anne sat mute, still searching for the date. "I'll check it later in your records. Let's talk about the past months. Specifically, what you have been doing to try to gain weight."
This was easier for Anne; the doctor had thrown her a rope and was slowly tugging her to the shore of the present. As she spoke, Falchuk focused on the details of her diet. "Now, tell me again what happens after each meal," he said.
Anne thought she had already explained this, that it all was detailed in her records. Surely her internist had told Dr. Falchuk about the diet she had been following. But she went on to say, "I try to get down as much cereal in the morning as possible, and then bread and pasta at lunch and dinner." Cramps and diarrhea followed nearly every meal, Anne explained. She was taking anti-nausea medication that had greatly reduced the frequency of her vomiting but did not help the diarrhea. "Each day, I calculate how many calories I'm keeping in, just like the nutritionist taught me to do. And it's close to three thousand."
Dr. Falchuk paused. Anne Dodge saw his eyes drift away from hers. Then his focus returned, and he brought her into the examining room across the hall. The physical exam was unlike any she'd had before. She had been expecting him to concentrate on her abdomen, to poke and prod her liver and spleen, to have her take deep breaths, and to look for any areas of tenderness. Instead, he looked carefully at her skin and then at her palms. Falchuk intently inspected the creases in her hands, as though he were a fortuneteller reading her lifelines and future. Anne felt a bit perplexed but didn't ask him why he was doing this. Nor did she question why he spent such a long while looking in her mouth with a flashlight, inspecting not only her tongue and palate but her gums and the glistening tissue behind her lips as well. He also spent a long time examining her nails, on both her hands and her feet. "Sometimes you can find clues in the skin or the lining of the mouth that point you to a diagnosis," Falchuk explained at last.
He also seemed to fix on the little loose stool that remained in her rectum. She told him she had had an early breakfast, and diarrhea before the car ride to Boston.
When the physical exam was over, he asked her to dress and return to his office. She felt tired. The energy she had mustered for the trip was waning. She steeled herself for yet another somber lecture on how she had to eat more, given her deteriorating condition.
"I'm not at all sure this is irritable bowel syndrome," Dr. Falchuk said, "or that your weight loss is only due to bulimia and anorexia nervosa."
She wasn't sure she had heard him correctly. Falchuk seemed to recognize her confusion. "There may be something else going on that explains why you can't restore your weight. I could be wrong, of course, but we need to be sure, given how frail you are and how much you are suffering."
Anne felt even more confused and fought off the urge to cry. Now was not the time to break down. She needed to concentrate on what the doctor was saying. He proposed more blood tests, which were simple enough, but then suggested a procedure called an endoscopy. She listened carefully as Falchuk described how he would pass a fiberoptic instrument, essentially a flexible telescope, down her esophagus and then into her stomach and small intestine. If he saw something abnormal, he would take a biopsy. She was exhausted from endless evaluations. She'd been through so much, so many tests, so many procedures: the x-rays, the bone density assessment, the painful bone marrow biopsy for her low blood counts, and multiple spinal taps when she had meningitis. Despite his assurances that she would be sedated, she doubted whether the endoscopy was worth the trouble and discomfort. She recalled her internist's reluctance to refer her to a gastroenterologist, and wondered whether the procedure was pointless, done for the sake of doing it, or, even worse, to make money.
Dodge was about to refuse, but then Falchuk repeated emphatically that something else might account for her condition. "Given how poorly you are doing, how much weight you've lost, what's happened to your blood, your bones, and your immune system over the years, we need to be absolutely certain of everything that's wrong. It may be that your body can't digest the food you're eating, that those three thousand calories are just passing through you, and that's why you're down to eighty-two pounds."
When I met with Anne Dodge one month after her first appointment with Dr. Falchuk, she said that he'd given her the greatest Christmas present ever. She had gained nearly twelve pounds. The intense nausea, the urge to vomit, the cramps and diarrhea that followed breakfast, lunch, and dinner as she struggled to fill her stomach with cereal, bread, and pasta had all abated. The blood tests and the endoscopy showed that she had celiac disease. This is an autoimmune disorder, in essence an allergy to gluten, a primary component of many grains. Once believed to be rare, the malady, also called celiac sprue, is now recognized more frequently thanks to sophisticated diagnostic tests. Moreover, it has become clear that celiac disease is not only a childhood illness, as previously thought; symptoms may not begin until late adolescence or early adulthood, as Falchuk believed occurred in Anne Dodge's case. Yes, she suffered from an eating disorder. But her body's reaction to gluten resulted in irritation and distortion of the lining of her bowel, so nutrients were not absorbed. The more cereal and pasta she added to her diet, the more her digestive tract was damaged, and even fewer calories and essential vitamins passed into her system.
Now, I think it's great that Falchuk was able to spend so much time with his patient and make the connection between her story and undiagnosed celiac disease. I totally approve of a doctor really paying attention to a patient. But, as I indicated above, I'm also sure that, in Dodge's case, possible celiac disease would leap to the mind of anyone who, like Falchuk, would be familiar with the current research, including the fact that it has been misdiagnosed or undiagnosed so dramatically in the United States. Doctors should listen...and they also should know.
For those among us who are schooled on the subject, it would take 15 seconds--not 15 years--to at least suspect celiac disease. [As noted in the previous post, even doctors have trouble getting correct diagnoses.] If doctors and policy makers are to help the millions of undetected cases currently in the United States, their awareness and alertness must reach that kind of level.
Thank you if you made it this far!
Wednesday, March 14, 2007
THE VIEW SPREADS THE WORD!
Today's much-anticipated View segment on celiac disease could mean a major improvement in the lives of many Americans. Thanks to the speedy work of the The View and the National Foundation for Celiac Awareness (NFCA), most of the coverage is already online via YouTube! (There's a little bit missing--I'll cover it in this post.)
This type of coverage is important and valuable because correctly diagnosing and treating celiac disease is a major public health issue in the United States. "As many as 3 million people in the United States have celiac disease but only about a tenth have been diagnosed, wrote Susan J. Landers in this American Medical News, referring to the findings of an independent panel of experts convened by the National Institutes of Health.
So how could more than 2.5 million Americans be unaware that they have celiac disease? Some of them were diagnosed with celiac disease years ago but incorrectly deemed "cured." (They might have been called "banana babies" because of the medical diet they were on.) Others may have been misdiagnosed or incompletely diagnosed by doctors who failed to test them for celiac disease, mistakenly thinking it too rare to consider. Testing for celiac disease with an informed physician is a relatively simple process, but because doctors underestimate the condition, it typically takes many years for patients to get correct celiac diagnoses after they first showed worrisome symptoms.
The intro to the show promised "Elisabeth's revealing her battle with celiac disease...finding out why it's easily misdiagnosed...and how it can lead to everything from infertility to cancer."
As you can see in the video, Dr. Green offered a mini-presentation during which he noted that the manifestations of untreated celiac disease can be very varied. The ones mentioned on this particular episode included:
bloating, gas, or adominal pain (may be misdiagnosed as IBD) abnormal stool irritability or behavior changes fatigue [a very common symptom--Ed.] itchy skin rash infertility miscarriage depression intestinal cancer
Dr. Green also showed how the gluten from wheat, barley, and rye causes atrophy of intestinal villi in people with celiac disease and explained that going on a lifelong gluten-free diet leads to healing for those people: "You have to be gluten-free your entire life. It's a lifelong diagnosis. If you get diagnosed in childhood or [as] an adult, it's for the rest of your life. Because as soon as you go back to gluten, you go back in that direction, flattening your villi." Or, as Bast put it: "A change in diet can change your life."
The genetic component of celiac disease also came up. Because close relatives of people with celiac disease are more likely to have the condition, it is a good idea for first- and second-degree relatives to be tested for it too. The standard diagnosis involves having blood samples taken while one is still eating gluten, then possibly following up with an upper endoscopy. Genetic testing can be useful in certain diagnostic situations, but there is currently no genetic test that, alone, will tell you that definitely have celiac disease.
There was a talk about foods such as cornbread and soy sauce containing the forbidden gluten--but just about anything (including cornbread and soy sauce, which is why clear labeling is so valuable) can be all right for the gluten-free diet depending on how the food is made. For example, the subject of a KitKat equivalent came up. I think Elisabeth cited Glutino Chocolate Wafers (and--I think mistakenly--said they were sugar-free). The closest KitKat equivalent that I've found is Glutano's Break Bar. (She said Glutino, I say Glutano.)
The show ended with some closing remarks not in the above clip. Rosie said, "Elisabeth, I think that was great that you talked about that 'cause, you know, it's been, you've had it for a while, right?"
Elisabeth said, "I have. And it took me so long to find out that I did. If I can just help someone not have six years of just hell before they find out....Especially kids, you know, they need more labeling on foods...and I'm going to try to do anything I can to get that fixed...."
Then there was this exchange between Behar and Essman (who had mentioned being on thyroid medication):
BEHAR (conversationally) You don't have it....
ESSMAN I probably do. I am doctor-phobic so I don't go get diagnosed....You know what? I eat the stuff and I feel bad and then I don't eat wheat and I feel good. So hello?
BEHAR It sounds like it's a little more complicated. It can cause worse diseases. You need to be diagnosed.
ESSMAN And my mother has it. And it's also connected to thyroid....
BEHAR Duh!
ESSMAN You know, I treat myself as if I do, and I don't eat the wheat.
That kind of exchange should sound pretty familiar to people in celiac world. My advice: If you think you might have it, consult with an informed doctor about getting tested. It typically all begins with a blood test while you're not on the gluten-free diet.
You know what I think would be interesting? Offering screening to anyone involved with The View and finding out what the results are.
Like many of us, Alice only found out she had celiac disease after a long, drawn-out period involving many frustrating visits to doctors. As Alice herself puts it, she suffered diarrhea, fatigue, bloating, a general malaise, and the trauma of a full-term stillbirth as well as several early miscarriages. Her teeth began to deteriorate and her sister-in-law wondered if she had anorexia, though doctors often observed that she looked fine.
An interesting aspect of celiac disease is that, while the above-mentioned symptoms are common, the condition can be accompanied by symptoms that are markedly different. Or no symptoms might be noticed at all. That is why testing by a well-informed doctor can be crucial. Here's the NFCA on diagnosing celiac disease.
Top kayaker Glenn Singleton and Olympic marathon runner Kate Smyth were athletic ambassadors for Australia's Coeliac Awareness Week 2009 (featuring mascot MOJO, right). 
Posts
