Celiac disease: Exploring four myths
Celiac disease is a digestive and immune disorder that can keep the body from absorbing necessary nutrients. “Our conception and awareness of celiac disease has evolved over the past few decades, but there are still aspects that remain poorly understood,” says Dr. Ciaran Kelly, medical director of the Celiac Center at Beth Israel Deaconess Medical Center and professor of medicine at Harvard Medical School.
Perhaps not surprisingly, misconceptions are widespread among the general public. One example? Many people assume that everyone who has celiac disease is plagued by abdominal pain, bloating, or diarrhea. But actually, many adults newly diagnosed with this inherited gluten intolerance don’t have these symptoms.
What’s more, gluten — the sticky protein found in grains such as wheat, barley, and rye — can cause gastrointestinal distress and other symptoms in people who don’t have celiac disease. Read on for a deeper dive into four myths and facts about celiac disease and related digestive conditions.
Myth # 1: Celiac disease is usually diagnosed at a young age
Not typically. While celiac disease can develop any time after a baby’s first exposure to gluten, it’s usually diagnosed much later in life. According to the National Celiac Association, the average age of diagnosis is between 46 and 56. Around 25% of people are diagnosed after age 60.
Celiac disease is slightly more common in women and among people with other autoimmune conditions, including type 1 diabetes, Hashimoto’s thyroiditis (a common cause of low thyroid levels), and dermatitis herpetiformis (a rare condition marked by an itchy, blistering rash).
“We don’t know why some people go from being susceptible to actually having celiac disease,” says Dr. Kelly. The prevailing theory is that some sort of physical or emotional stress — such as a viral infection, surgery, or anxiety from a stressful life event — may “flip the switch” and cause the disease to appear, he says. “Increasing numbers of people are being diagnosed at midlife and older, often after they’re found to have conditions such as anemia or osteoporosis caused by nutrient deficiencies,” says Dr. Kelly.
Myth #2: Celiac disease only affects the gut
When people have celiac disease, eating gluten triggers an immune system attack that can ravage the lining of the small intestine. A healthy small intestine is lined with fingerlike projections, called villi, that absorb nutrients. In celiac disease, the immune system attacks the villi, causing them to flatten and become inflamed — and thus unable to adequately absorb nutrients.
While gastrointestinal problems can occur, they aren’t always present. In fact, celiac disease can present with many different symptoms that affect the nervous, endocrine, and skeletal systems. A few examples are brain fog, changes in menstrual periods, or muscle and joint pain.
Myth # 3: Celiac disease versus gluten intolerance
If you feel sick after eating gluten, you probably have celiac disease, right? Actually, that may not be true. Some people have non-celiac gluten sensitivity (also called gluten intolerance), which can cause uncomfortable digestive symptoms after eating gluten. But gluten intolerance differs from celiac disease.
- Celiac disease is diagnosed with blood tests that look for specific antibodies. If antibodies are present, a definitive diagnosis requires an intestinal biopsy to look for signs of damage that characterize the condition.
- Non-celiac gluten sensitivity does not trigger antibodies or cause intestinal damage. Yet some people with this problem say they also experience brain fog, trouble concentrating, muscle aches and pain, and fatigue after eating gluten-containing foods.
“Non-celiac gluten sensitivity appears to be a real phenomenon, but it’s not well defined,” says Dr. Kelly. It’s unclear whether people experiencing it are intolerant to gluten or to something else in gluten-containing foods.
- One possibility is sugarlike molecules known as FODMAPs, which are found in many foods — including wheat. Short for fermentable oligosaccharides, disaccharides, monosaccharides, and polyols, gas and bloating can occur when gut bacteria feed on FODMAPs.
- Another possibility is an allergy to wheat, which can cause symptoms such as swelling, itching, or irritation of the mouth and throat after eating wheat. Other symptoms include a skin rash, stuffy nose, and headache, as well as cramps, nausea, and vomiting. Some people may develop a life-threating allergic reaction known as anaphylaxis.
Myth #4: A gluten-free diet always relieves the symptoms and signs of celiac disease
The sole treatment for celiac disease — adopting a diet that avoids all gluten-containing foods — doesn’t always help. This problem is known as nonresponsive celiac disease.
“About 20% of people with celiac disease have ongoing symptoms, despite their best efforts to stick to a gluten-free diet,” says Dr. Kelly. Others have intermittent signs and symptoms, particularly when they are accidentally exposed to gluten. Accidental exposures often happen when people eat prepared or restaurant foods that claim to be gluten-free but are not. Cross contamination with gluten-containing foods is another potential route.
Potential solutions to nonresponsive celiac disease are being studied. Three promising approaches are:
- Enzymes that break down gluten, which people could take alongside gluten-containing foods. “It’s a similar concept to the lactase pills taken by people who are lactose intolerant to help them digest dairy products,” says Dr. Kelly.
- Dampening the immune response to gluten by inhibiting an enzyme called tissue transglutaminase that makes gluten more potent as an antigen.
- Reprogramming the immune response to prevent the body from reacting to gluten.
About the Author
Julie Corliss, Executive Editor, Harvard Heart Letter
Julie Corliss is the executive editor of the Harvard Heart Letter. Before working at Harvard, she was a medical writer and editor at HealthNews, a consumer newsletter affiliated with The New England Journal of Medicine. She … See Full Bio View all posts by Julie Corliss
About the Reviewer
Howard E. LeWine, MD, Chief Medical Editor, Harvard Health Publishing; Editorial Advisory Board Member, Harvard Health Publishing
Dr. Howard LeWine is a practicing internist at Brigham and Women’s Hospital in Boston, Chief Medical Editor at Harvard Health Publishing, and editor in chief of Harvard Men’s Health Watch. See Full Bio View all posts by Howard E. LeWine, MD
Midlife ADHD? Coping strategies that can help
Trouble staying focused and paying attention are two familiar symptoms of attention deficit hyperactivity disorder (ADHD), a common health issue among children and teens.
When ADHD persists through early adulthood and on into middle age, it presents many of the same challenges it does in childhood: it’s hard to stay organized, start projects, stay on task, and meet deadlines. But now life is busier, and often expectations from work and family are even higher. Fortunately, there are lots of strategies that can help you navigate this time in your life.
Staying organized
Organizational tools are a must for people with adult ADHD. They’ll help you prioritize and track activities for each day or the coming weeks.
- Pick the right tools. Tools can include a pen and paper to make lists, or computer or smartphone apps to set appointment reminders, highlight important days on the calendar, mark deadlines, and keep lists and other information handy.
- Schedule updates. Set aside time each day to update your lists and schedules. Don’t let the task become a chore in itself; think of it like a routine task such as brushing your teeth, and do it daily so it becomes an established habit.
- Set a timer. And a word of caution: smartphones and computers can also turn into a distraction. If you have adult ADHD, you may find yourself spending hours looking at less useful apps or sites. If that’s a frequent trap for you, set a timer for each use or keep the phone off or in another room when you are trying to work.
Staying focused
Just being organized doesn’t mean your work will get done. But a few simple approaches can at least make it easier to do the work.
- Declutter your home and office. Give yourself an appealing work environment and keep important items easily accessible.
- Reduce distractions. This could mean changing your workstation so it doesn’t face a window, moving to a quieter space, or just silencing your smartphone and email alerts.
- Jot down ideas as they come to you. You may have an “aha” moment for one task while you’re in the middle of another. That’s okay; just write down that thought and get back to it later, after your more pressing work is finished.
Meeting deadlines
Deadlines pose two big challenges when you have adult ADHD. First, it’s hard to start a project, often because you want it to be perfect, or you’re intimidated by it so you put it off. Second, when you do start a project, it’s very easy to become distracted and leave the task unfinished.
How can you avoid these traps?
- Put off procrastinating. Put procrastination on your to-do list — like a chore — and fool yourself into actually starting your work.
- Deal with emails, phone calls, or other matters as soon as you can. That way there will be fewer things hanging over your head and overwhelming you later on.
- Be a clock watcher. Get a watch and get in the habit of using it. The more aware you are of time, the more likely you’ll be able to avoid spending too long on a task.
- Take one thing at a time. Multitasking is overrated for everyone — and it’s a nightmare for people with adult ADHD. Focus on completing one task, then move on to the next.
- Be realistic about your time. This can mean having to say no to new projects or other commitments.
Get more help
The ideas listed here can help you start coping with adult ADHD, but they may not be enough to help you overcome adult ADHD’s challenges.
Consider hiring an ADHD coach who can provide more strategies and give you additional tools to cope with your condition. Look for an ADHD coach who is a licensed mental health professional who specializes in treating ADHD, and may also have a certification in ADHD coaching from the ADHD Coaches Organization.
About the Author
Heidi Godman, Executive Editor, Harvard Health Letter
Heidi Godman is the executive editor of the Harvard Health Letter. Before coming to the Health Letter, she was an award-winning television news anchor and medical reporter for 25 years. Heidi was named a journalism fellow … See Full Bio View all posts by Heidi Godman
About the Reviewer
Howard E. LeWine, MD, Chief Medical Editor, Harvard Health Publishing; Editorial Advisory Board Member, Harvard Health Publishing
Dr. Howard LeWine is a practicing internist at Brigham and Women’s Hospital in Boston, Chief Medical Editor at Harvard Health Publishing, and editor in chief of Harvard Men’s Health Watch. See Full Bio View all posts by Howard E. LeWine, MD