Archives September 2024

Celiac disease: Exploring four myths

Gluten-free bread & bagels with 12 appetizing toppings like avocado & olives, hummus & chickpeas, sliced hardboiled eggs & greens; concept is celiac disease

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

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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

photo of Howard E. LeWine, MD

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

Ever hear of tonsil stones?

Illustration of a woman with black hair pulled into a bun, head tipped back, gargling with salt water to relieve sore throat from tonsil stones

Recently, a friend asked me about tonsil stones. He has sore throats several times a year, which are instantly relieved by gargling to remove them. When I told him I thought tonsil stones were pretty rare, he asked: “Are you sure about that? My ear, nose, and throat doctor says they’re common as rocks.” (Get it? stones? rocks?)

It turns out, my friend and his doctor are on to something. Tonsil stones are surprisingly common and often quite annoying. Here’s what to know and do.

What are tonsil stones?

Tonsil stones (medical term: tonsilloliths) are small white or yellow deposits on the tonsils. They develop when bacteria, saliva, food particles, and debris from cells lining the mouth get trapped in tiny indentations called crypts.

They vary considerably between people, including:

  • Size. They may be so small that you can’t see them with the naked eye. Or they may grow to the size of gravel or, rarely, much larger.
  • Consistency. They’re often soft but may calcify, becoming hard as a rock. Hence, the name.
  • How long they last. Tonsil stones can last days to weeks, or may persist far longer before they break up and fall out.
  • How often they occur. New tonsilloliths may appear several times each month or just once or twice a year.

While they’re more likely to form if you have poor oral hygiene, good oral hygiene doesn’t provide complete protection. Even those who brush, floss, and see their dentists regularly can develop tonsil stones.

How common are tonsil stones?

You’ve heard of kidney stones and gallstones, right? Clearly, those conditions are better known than tonsil stones. Yet tonsil stones are far more common: studies suggest that up to 40% of the population have them. Fortunately, unlike kidney stones and gallstones, tonsil stones are usually harmless.

What are the symptoms of tonsil stones?

Often people have no symptoms. In fact, if tonsil stones are small enough, you may not even know you have them. When tonsil stones do cause symptoms, the most common ones are:

  • sore throat, or an irritation that feels as though something is stuck in the throat
  • bad breath
  • cough
  • discomfort with swallowing
  • throat infections.

Who gets tonsil stones?

Anyone who has tonsils can get them. However, some people are more likely than others to form tonsil stones, including those who

  • have tonsils with lots of indentations and irregular surfaces rather than a smooth surface
  • smoke
  • drink lots of sugary beverages
  • have poor oral hygiene
  • have a family history of tonsil stones.

How are tonsil stones treated?

That depends on whether you have symptoms and how severe the symptoms are.

  • If you have no symptoms, tonsil stones may require no treatment.
  • If you do have symptoms, gargling with salt water or removing tonsil stones with a cotton swab or a water flosser usually helps. Avoid trying to remove them with sharp, firm objects like a toothpick or a pen, as that can damage your throat or tonsils.
  • If your tonsils are inflamed, swollen, or infected, your doctor may prescribe antibiotics or anti-inflammatory medications.

Is surgery ever necessary?

Occasionally, surgery may be warranted. It’s generally reserved for people with severe symptoms or frequent infections who don’t improve with the measures mentioned above.

Surgical options are:

  • tonsillectomy, which is removing the tonsils
  • cryptolysis, which uses laser, electrical current, or radio waves to smooth the deep indentations in tonsils that allow stones to form.

Can tonsil stones be prevented?

Yes, there are ways to reduce the risk that tonsil stones will recur. Experts recommend the following:

  • Brush your teeth and tongue regularly (at least twice a day: in the morning and before sleep).
  • Floss regularly.
  • Gargle with salt water after eating.
  • Eliminate foods and drinks that contain a lot of sugar, which feeds bacteria that can help stones form.
  • Don’t smoke, because smoking irritates and inflames tonsils, which can encourage stone formation. The same may apply to vaping, though there is limited research to rely upon.

The bottom line

Considering how common tonsil stones are and how bothersome they can be, it seems strange that they aren’t more well known. Maybe that’s because they often get better on their own, or people figure out how to deal with them without needing medical attention.

I hope you aren’t one of the many millions of people bothered by tonsil stones. But if you are, it’s good to know that they’re generally harmless and can be readily treated and prevented.

Now that you know more about them, feel free to spread the word: tonsil stones should be a secret no more.

About the Author

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Robert H. Shmerling, MD, Senior Faculty Editor, Harvard Health Publishing; Editorial Advisory Board Member, Harvard Health Publishing

Dr. Robert H. Shmerling is the former clinical chief of the division of rheumatology at Beth Israel Deaconess Medical Center (BIDMC), and is a current member of the corresponding faculty in medicine at Harvard Medical School. … See Full Bio View all posts by Robert H. Shmerling, MD

Packing your hurricane go bag? Make provisions for your health

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When you live in a coastal area, preparing early for potential hurricanes is a must. Storms can develop quickly, leaving little time to figure out where you’ll be safe or which items to pack if you have to evacuate. And health care necessities, such as medications or medical equipment, are often overlooked in the scramble.

“People might bring their diabetes medication but forget their blood sugar monitor, or bring their hearing aids but forget extra batteries for them,” says Dr. Scott Goldberg, medical director of emergency preparedness at Brigham and Women’s Hospital and a longtime member of a FEMA task force that responds to hurricane-damaged areas.

Here’s some insight on what to expect this hurricane season, and how to prioritize health care in your hurricane kit.

What will the 2024 hurricane season look like?

This year’s hurricane predictions underscore the urgency to start preparations now.

Forecasters with the National Oceanic and Atmospheric Administration's National Weather Service expect above-normal activity for the 2024 hurricane season (which lasts until November 30).

Meteorologists anticipate 17 to 25 storms with winds of 39 mph or higher, including eight to 13 hurricanes — four to seven of which could be major hurricanes with 111 mph winds or higher.

What kinds of plans should you make?

Preparing for the possibility of big storms is a major undertaking. Long before ferocious winds and torrential rains arrive, you must gather hurricane supplies, figure out how to secure your home, and determine where to go if you need to evacuate (especially if you live in a flood zone). Contact the emergency management department at your city or county for shelter information.

If you’ll need help evacuating due to a medical condition, or if you’ll need medical assistance at a shelter, find out if your county or city has a special needs registry like this one in Florida. Signing up will enable first responders to notify you about storms and transport you to a special shelter that has medical staff, hospital cots, and possibly oxygen tanks.

What should you pack?

While a shelter provides a safe place to ride out a storm, including bathrooms, water, and basic meals, it’s up to you to bring everything else. It’s essential to pack medical equipment and sufficient medications and health supplies.

“It’s natural to just grab the prescription medications in your medicine cabinet, but what if it’s only a two-day supply? It might be a while before you can get a refill. We recommend at least a 14-day or 30-day supply of every prescription,” Dr. Goldberg says. “Talk to your doctor about the possibility of getting an extra refill to keep on standby for your go bag.”

Other health-related items you’ll want to pack include:

  • medical supplies you use regularly, such as a blood pressure monitor, heart monitor, CPAP machine, wheelchair, or walker
  • over-the-counter medicines you use regularly, such as heartburn medicine or pain relievers
  • foods for specific dietary needs, such as gluten-free food if you have celiac disease (if you have infants or children, you’ll need to bring foods they can eat)
  • healthy, nonperishable snacks such as nuts, nut butters, trail mix, dried fruit, granola bars, protein bars, and whole-grain bread, crackers, or cereals
  • hygiene products such as soap, hand sanitizer, toothbrushes and toothpaste, shampoo, deodorant, infant or adult diapers, lip balm, moist towelettes, and toilet paper — because shelters often run out of it.

Remember the basics

In some ways, you can think of shelter living like camping. You’ll need lots of basic supplies to get through it, including:

  • a sleeping bag or blanket and pillow for each person in your family
  • clean towels and washcloths
  • a few extra changes of clothes per person
  • a first-aid kit
  • flashlights and extra batteries
  • chargers for your electronic gadgets
  • rechargeable battery packs.

Bring important paperwork

In addition to supplies, bring important documents such as:

  • a list of your medications, vitamins, and supplements (include the name, dose, and frequency of each one)
  • a list of the names, addresses, and phone numbers of your primary care provider and any specialists who treat you
  • a list of your emergency contacts and their phone numbers
  • your pharmacy’s phone number and address
  • copies of your birth certificate and driver’s license
  • copies of home, car, or life insurance policies
  • copies of your health insurance cards
  • a copy of your advance directive — which includes your living will and health care proxy form.

“Store these documents on a flash drive. Also make photocopies of them, which are easiest for doctors to consult in an emergency setting. Place them in a plastic zip-top bag to keep them dry,” Dr. Goldberg advises.

Prepare right now

Start today. Gather as many go-bag supplies as you can, including the bags. A small suitcase, backpack, or duffel bag for each person in your family will work well.

And try not to put off these important preparations. “Hurricanes are major stressors. You might be worried, sleep deprived, fatigued, and emotional,” Dr. Goldberg says. “All of that will make it hard to think clearly. You’ll do yourself and your family a favor by having discussions now and getting started on your hurricane plan.”

About the Author

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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

photo of Howard E. LeWine, MD

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