Expert Interview Series: Alice Bast of Beyond Celiac Tells Us About Celiac Disease And How to Live With It
Alice Bast is CEO of Beyond Celiac, a patient-centric organization serving 2.5 million Americans. Recently, Alice sat down with us to educate us about celiac disease and to give us some suggestions on how to transition to a gluten-free...
Alice Bast is CEO of Beyond Celiac, a patient-centric organization serving 2.5 million Americans. Recently, Alice sat down with us to educate us about celiac disease and to give us some suggestions on how to transition to a gluten-free diet.
Tell us your story about your struggle with celiac disease. Why did you decide to spearhead the efforts of Beyond Celiac?
The day I was diagnosed with celiac disease was the best day of my life.
People always react with surprise when I tell them that. They ask how I can consider being diagnosed with a serious genetic autoimmune disease such a positive milestone. And I tell them it's because that's the day I got my life back.
In hindsight, I believe a vacation to Mexico played a role in triggering the disease. You see, celiac disease is a genetic condition, so you have to have a genetic susceptibility in order to develop it. But there's something else needed to trigger the onset: an environmental factor, usually some type of emotional or physical stress. There's little known about it; but in my case, I believe a parasite that I caught on vacation was my trigger. I was treated, but after that, things were never the same.
My husband and I were starting a family, and my oldest daughter was born perfectly healthy after a normal pregnancy. My second pregnancy, though, was nothing like the first. Early on, severe fatigue set in. I was constantly weak and rarely got enough sleep, as severe diarrhea, joint pain, and migraines kept me awake at night. No matter what I did, I lost weight. Two weeks before my due date, I lost my baby.
Over the years, I went on to have multiple miscarriages before finally delivering my youngest daughter, who weighed only two pounds. For eight years, I visited an incredible number of doctors - 22, to be exact. No one knew what was wrong with me. At 5'9?, I had wilted to a mere 105 pounds. I thought I was dying.
It wasn't until talking to a family friend - a veterinarian - that I realized that what I was eating could be the problem. She mentioned celiac disease and said that animals can have reactions to grains. Still on my quest for answers, I visited my 23rd doctor. He said I was too tall to have celiac disease. Still, I insisted. "Here's my arm. Give me the blood test." Sure enough, the results came back positive for celiac disease. Finally, after eight years of struggling, I had my answer.
There's no cure for celiac disease, but I was told that by adopting a gluten-free diet and ridding myself of anything derived from wheat, barley, or rye, my health would return and I could live a normal life. And that's exactly what happened.
I enthusiastically accepted my diagnosis and took on the difficult task of eating gluten-free. No more pizza, pasta, bread, soy sauce, cakes... the list goes on. But I was willing to make the switch to reclaim my health. What bothered me the most about my diagnosis was the thought that other people who, like me, don't represent the "typical" celiac disease patient (I wasn't short, I wasn't a child, I looked fine), were out there suffering and not knowing why. I had lost my babies, and I was determined to prevent the same thing from happening to other women.
My gastroenterologist and I dug into European research studies and became convinced that the untreated celiac had caused my fertility issues. My commitment to spreading celiac awareness grew stronger. I had to get the word out to people in every way I could. And so, in 2003, Beyond Celiac (formerly the National Foundation for Celiac Awareness) was born.
I don't want other women to experience the heartbreak that comes with losing a baby due to undiagnosed celiac disease. And I don't want people to spend years questioning why they're suffering from depression, digestive issues, infertility, migraines, fatigue, anxiety, and even some cancers. There's an answer, and that answer could be celiac disease.
How can you tell if you are suffering from celiac disease? What types of environmental conditions can trigger it?
Accurately diagnosing celiac disease can be quite difficult largely because the symptoms often mimic those of other diseases, including irritable bowel syndrome (IBS), Crohn's disease, intestinal infections, lactose intolerance, and depression. There are more than 300 symptoms of celiac disease, and they may vary among different people. Or there may be no symptoms at all.
Blood tests are the first step in a diagnosis of celiac disease. A doctor will order one or more of a series of blood tests to measure your body's response to gluten. It is important to continue eating a normal, gluten-containing diet before being tested for celiac disease. If the blood tests and symptoms indicate celiac disease, a physician will likely recommend an upper gastrointestinal endoscopy. This procedure will allow your doctor to identify any inflammation or damage in your small intestines, which is a sure sign of celiac disease.
Also, there are known risk factors. Celiac disease is genetically-based, so it is more common in those with a family history of the condition. This means that if you have a blood relative with celiac disease, you are at an increased risk for developing it, too. This autoimmune condition occurs in up to 5-10% of family members of people diagnosed with celiac disease.
Having an autoimmune disease makes you more likely to develop other autoimmune diseases. Thyroid disease and type 1 diabetes are examples of other autoimmune diseases that are common among people with celiac disease.
If the disease is ignored or untreated, what can happen to a person with celiac disease?
In addition to the painful and unpleasant symptoms that may be present, such as rashes, stomach pain, bloating, migraine headaches, and more, untreated celiac disease can leave a patient vulnerable to a host of other diseases and conditions. Some are caused by malabsorption of nutrients, including anemia, osteoporosis, and failure to thrive. Liver disease, thyroid disease, and even some cancers have been linked to untreated celiac disease.
Finish this sentence: "The myth about celiac disease that I hear the most often is..."
... that it's not a big deal and that it's easy to treat. Celiac disease is serious and people who have it need to be diagnosed properly and treated immediately or risk further health complications.
Research is also demonstrating that most people diagnosed with celiac disease have ongoing damage to their small intestines. The gluten-free diet is not only less effective than once thought, but it also poses serious quality-of-life issues for patients, thereby necessitating the development of additional treatment options.
People think that the gluten-free diet is the cure for celiac disease when in reality it's a band-aid. Research has shown the gluten-free diet alone is not enough, and many people with celiac disease don't heal even though they are trying to stay gluten-free. Gluten hides in many foods, and something as simple as a crumb of gluten touching a "gluten-free" food can trigger the autoimmune response.
What is the difference between celiac disease and simple gluten sensitivity?
Gluten sensitivity has been coined to describe those individuals who cannot tolerate gluten and experience symptoms similar to those with celiac disease, yet lack the same antibodies and intestinal damage as seen in celiac disease. Research indicates that individuals with non-celiac gluten sensitivity have a prevalence of extraintestinal or non-GI symptoms, such as headaches, "foggy mind," joint pain, and numbness in the legs, arms, or fingers. Some research also shows that FODMAPs, a group of poorly-digested carbohydrates, are responsible for gluten sensitivity. It's important to note that gluten-containing grains are high in FODMAPs.
In your opinion, how many people who have embraced a gluten-free diet are actually suffering from gluten sensitivity or celiac disease?
Market research estimates that 30% of the population is excluding or limiting the amount of gluten in their diets. Celiac disease affects roughly 1% of the population, and four out of five of those people are undiagnosed or misdiagnosed. It's also estimated that 6% of the population has gluten sensitivity.
There are other health conditions for which a gluten-free diet may be suggested. However, it does seem that a significant portion of people who are eating gluten-free do not have a diagnosed condition that would warrant it.
In practice, what does transitioning to a gluten-free diet entail?
Gluten is a protein found in wheat, barley, rye, and the derivatives of these grains, including malt and brewer's yeast. A gluten-free diet excludes all products containing these ingredients and their derivatives.
Although getting a handle on this approach can be surprisingly difficult at first, people who need to eat gluten-free can still enjoy a healthy diet filled with fruits, vegetables, meats, poultry, fish, beans, legumes, and most dairy products. Such ingredients are naturally gluten-free and safe for individuals who do not have allergies to these respective food groups. I often tell people just starting out on the gluten-free diet to shop the perimeter of the grocery store, where most of the naturally gluten-free foods are found.
In addition, there are a variety of grain, flour, and starch alternatives that naturally do not contain gluten and thus can be consumed by those on a gluten-free diet. The most common of these are corn and rice, but there are numerous others like buckwheat, quinoa, amaranth, and millet. Flours made from nuts and beans are also available.
All grains are considered "high risk" for cross-contact because they are often grown, milled, and manufactured near gluten-containing grains. "Cross-contact" occurs when a gluten-containing food touches a gluten-free food. Eating even tiny amounts of gluten like this can cause damage to the small intestine and prevent nutrients from being absorbed into the bloodstream. Whenever possible, purchase naturally gluten-free grains, flours, and starches that are labeled gluten-free and also certified gluten-free by a third party.
Could you share one of your favorite gluten-free recipes with us?
I tend to eat mostly fresh or "gently prepared" foods. Here is one of my favorites:
Pink Grapefruit and Avocado Salad
• 1 sliced fresh avocado
• 2 sectioned and peeled pink grapefruits
• 1 head of Boston lettuce
• Olive oil
• Lemon juice
• Fresh basil
1. Wash and dry lettuce and place in bowl. Add in avocado and pink grapefruits.
2. Chop fresh basil and add to salad per your taste preferences.
3. Drizzle salad with as little or as much olive oil and lemon juice as you like. Salt and pepper to taste.
• Create a pink grapefruit zest dressing. Zest the grapefruit and whisk together with lemon juice or olive oil.
• For extra nutritional value, top with pomegranate seeds.
• To give the salad a crunch, toss in some toasted nuts.
When you are cooking gluten-free meals and dishes in your kitchen, what are the utensils, tools, and other items that you simply cannot do without?
It's veryhelpful to have designated or even color-coded utensils for preparing gluten-free foods if you share a kitchen with those who do eat and prepare gluten-containing foods. For example, if the red-handled utensils are always for the gluten-free cooking, then you greatly reduce the risk of introducing cross-contact. You can't share a toaster because of cross-contact with crumbs, so some people choose to have a designated gluten-free toaster in their kitchen.
It's also very important to label condiments and jars. For example, if someone makes a peanut butter and jelly sandwich with regular bread and re-dips the knife in the jar after smearing it on gluten-containing bread, you can't safely make a gluten-free PB&J from the same jars.
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