Weight gain and celiac

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Weight Gain and the Gluten-Free Diet
Counseling Clients is Key to Their Success

By Lindsey Getz

When clients and patients begin eating a gluten-free diet because of a celiac disease or gluten-sensitivity diagnosis, chances are they’ll begin to gain weight.

According to research by Daniel Leffler, MD, MS, an international authority on celiac disease and assistant professor of medicine at Harvard Medical School, the closer people adhere to a gluten-free diet, the more likely they are to gain weight. This can put added stress on a recent gluten-free foods convert, which is a good reason to begin counseling celiac and gluten-sensitive patients about weight management immediately after their diagnosis and for the long term.

There are several reasons why people who begin eating gluten-free foods gain weight. Better absorption of nutrients and calories is a key reason, says Amy Jones, MS, RD, LD, chief clinical dietitian and celiac support group facilitator at Mary Rutan Hospital in Bellefontaine, Ohio. “Though in the past they haven’t been able to absorb well, now they’re absorbing more calories,” she says. “Plus, if they had diarrhea or decreased intake for so long, it’s no doubt that they’re going to start eating more when they start feeling better.”

Certain gluten-free products are another contributing factor to weight gain, as the growing variety of prepackaged, processed foods isn’t always the best choice. “Now that we have an ample supply of gluten-free foods on the market, we’re seeing extended weight gain,” says Rachel Begun, MS, RDN, a gluten-free lifestyle expert and spokesperson for the Academy of Nutrition and Dietetics. “Many gluten-free products are high in calories, fat, and sugar while also being low in nutrients. When people go gluten free and eat too much of these highly processed, low-nutrient foods they’re likely to gain weight. There’s also a ‘health halo’ surrounding gluten-free right now. It’s important that consumers understand that just because something is gluten free doesn’t necessarily mean it’s healthful or is a good option for weight loss.”

Because patients may have been able to eat whatever they wanted because of poor calorie or nutrient absorption before their diagnosis, it’s common for them to experience what’s called portion distortion once they go gluten free. “As one of the patients in my support group put it, she was renting her food instead of absorbing it,” Jones says. “The attitude of portion size is automatically distorted because the individual is used to eating whatever they want in any amount.”

Given these facts, it’s important for patients’ success to teach them how to maintain a healthful weight after switching to a gluten-free diet. Discouragement as a result of gaining weight is a common reason many patients stop following the diet. “It’s so important to prepare the patient for that almost-inevitable weight gain,” Jones says. “I make sure patients know it’s not that they’re doing something wrong and point out that it’s a measure of healing. While weight gain can be uncomfortable for most people, it means they’re doing pretty well on the new diet. I try to put it in a positive light.”

In addition, Jones discusses weight management techniques with her patients. “I’m a big believer in mindful eating,” she says. “Simple things like not having food out and available, using small plates, and not eating while watching TV all work.”

Begun adds that a diet rich in highly processed gluten-free foods isn’t ideal for either healing the body or achieving a healthful weight. She encourages patients to eat whole, nutrient-rich foods. “Nutrient deficiencies also are common with a celiac diagnosis, so patients need to work with a dietitian to tailor a diet rich in the nutrients their body is lacking,” she says.

Since most people snack, suggest good choices such as Greek yogurt and fruit, dried fruit and nuts, 100% corn tortilla chips and salsa, peanut or almond butter on apple slices, or hummus and veggie sticks, Begun says.

Of course, physical activity also is critical to weight maintenance. “Finding something you love and enjoy such as walking is incredibly helpful,” Jones adds. “I like pedometers because they remind you to be more active. It’s important to be active throughout the day. I’m a big proponent of six 5-minute walks throughout the day compared to one 30-minute walk.”

Helping clients set realistic expectations is important as RDs counsel patients, Jones continues. “It’s not uncommon for patients to get frustrated if they’re not losing weight fast enough, so they definitely need encouragement—particularly so that they stick with the diet.”

— Lindsey Getz is a freelance writer based in Royersford, Pennsylvania.

Healthy Weight Gain in Celiac Disease

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The term “weight management” generally brings to mind the issue of how to lose weight, or at least how to prevent gain. But sometimes there are health-related reasons to gain weight, and one scenario where this may be the case is in celiac disease.

Weight loss (or, in the case of kids, slowed growth) is one of many possible consequences of undiagnosed celiac disease. The inflammatory response caused by gluten in people who have celiac disease undermines the body’s ability to absorb nutrients by damaging intestinal cells that are involved in nutrient absorption. When nutrients aren’t absorbed, they are not available to the body to support health and growth: malnutrition, weight loss, and/or slowed growth can result.

There are two main aspects to the recovery of nutritional status and health after beginning a gluten-free diet: 1) the healing of intestinal cells, which allows for normal nutrient absorption; 2) consumption of a healthy, gluten-free diet that provides the nutrients needed to help reverse nutrient deficiencies and that (when applicable) supports recovery of lost weight and/or resumption of normal growth in kids.

In the case of children who have celiac disease, weight loss – or a slowing of weight gain or overall growth – can be especially detrimental. While there are natural variations in children’s rates of growth and weight gain, most healthy kids generally follow the ranges defined on standard pediatric growth charts. Falling below these ranges may be associated with increased risk for various conditions, including decreased immune function, cognitive impairment, and higher risk of fractures due to decreased bone density.

It is important to work closely with your child’s or your own personal healthcare team and dietitian throughout the healing process so that follow-up, testing, and dietary advice and planning can be individually tailored. However, following is some general information to keep in mind.

An increase in calories consumed generally leads to a gain of weight, and vice-versa, reducing calorie intake generally leads to weight loss. However, re-gaining weight that was lost unintentionally (or reversing a trend of slowed growth) needs to take into account more than just increasing calories. It’s easy to add calories to the diet for example by increasing intake of common processed foods that often get caloric density from fats and sugars but which don’t provide significant amounts of vitamins, minerals, and other nutrients that are essential to health and rebuilding. When the body becomes starved of critical nutrients it begins a process of “autophagy,” which means that it starts breaking down its own tissues to provide ongoing energy and other components needed to maintain functioning. Muscle and other tissues that may have been broken down by the body need not only extra calories, but also protein sources for rebuilding. This is even more critical for children, who are not only rebuilding lost tissue, but supporting ongoing growth as well.

What does all this mean in terms of what foods to put on your gluten-free table? Let’s look at some details:

Healthy Gluten-Free Diet Guidelines

  • A healthy gluten-free diet to support reversal of malnutrition, weight loss, or impaired growth should include plenty of vegetables, sufficient protein, gluten-free whole grains & healthy starches, healthy fats, nuts & seeds, and fruits.
  • Good sources of protein include meats, poultry and fish, beans, eggs, nuts and seeds, and dairy products.
  • Each meal, aim to fill half the plate with vegetables. As a simple rule of thumb, think of the colors of each plant as an indicator of its nutrients. The more colors on the plate, the more different nutrients being provided. Favoring cooked vegetables rather than raw may be easier on the digestive system of those with significant intestinal damage. Consult with your dietitian/healthcare team.
  • Kids generally have smaller appetites and need to eat more often than adults. This means that snacks play a more important role in their diet, so be sure to choose healthy, nutrient-dense snacks, too. Instead of thinking of snacks like treats, think of them as mini-meals: opportunities to provide important nutrients. In the early stages of recovery it may be necessary to provide full meals 5 or 6 times a day, so what you had thought of as a snack time actually becomes another meal. Consult with your dietitian/healthcare team.

Ideas for adding nutrient-dense foods to snacks and meals:

Start with favorite foods that are naturally gluten-free, and add to them:

  • Nuts (chopped or sliced) and seeds (e.g. sunflower or pumpkin) work great on cereal (hot or cold), yogurt, salads, vegetables, and casseroles.
  • Add sliced avocado to sandwiches and salads.
  • Spread hummus on sandwiches
  • Add grated cheese to baked potatoes
  • Spread a split banana with peanut or almond butter and drizzle with honey (microwave if desired)

Good snack items:

    • Nut and dried fruit-based energy bars
    • Hard boiled and deviled eggs
    • Fruit and yogurt smoothie with nut butter and extra powdered milk added in
    • Your favorite nut butter (almond, peanut) on crackers, with apple slices
    • Gluten-free granola with fruit and milk
    • Hummus and whole grain GF crackers with carrot sticks
    • Cheese, fruit, and whole grain GF crackers
    • Avocado, smashed with a little lime juice and salt, with corn or bean-based chips
    • Bean dip with guacamole and corn or bean-based chips
    • Trail mix. Make your own from your favorite dried fruits and nuts

Contributions from Carolina Nunes, MS, Bastyr University Dietetic Intern (2019)

This article has been assessed and approved by a Registered Dietitian Nutritionist.

Your 5 Worst Gluten-Free Mistakes

After experiencing some wacky symptoms, I was recently tested for celiac disease, and while the report came back negative, I’ve noticed that I do feel better when I avoid gluten. Many of my clients are in the same boat, but others seek me out after going gluten free and feeling worse, or even gaining weight, which seems to be increasingly common. The truth is, navigating the gluten-free landscape can be pretty darn tricky. Here are five common missteps I see, and how to resolve them.

Not “getting” gluten
One client recently said to me, “I’m not really sure what gluten is, but I know it’s bad, right?” I think a lot of people are a little in the dark about the issue at large, and it is complicated, but in a nutshell, here’s what you need to know: gluten is a type of protein naturally found in wheat (including spelt, kamut, farro, and bulgur) and other grains, like barley and rye. In people who have celiac disease, consuming even small amounts of gluten triggers unwelcome symptoms, including belly pain and bloating. This happens because gluten causes the immune system to damage or destroy villi, the tiny, fingerlike structures that line the small intestine like a microscopic plush carpet. Healthy villi absorb nutrients through the intestinal wall into the bloodstream, so when they become damaged, chronic malnutrition occurs, which is typically accompanied by weight loss and exhaustion. Other symptoms may include bone or joint pain, depression, and skin problems. In people with this diagnosis, the only way to reverse the damage, and the accompanying symptoms, is to completely avoid gluten. People like me, who test negative for celiac disease, may be experiencing a condition called gluten intolerance, or gluten sensitivity, which means that while not celiac, consuming gluten causes bothersome side effects, which can include flu-like feelings, bloating, and other gastrointestinal problems, mental fogginess, and fatigue. Unfortunately, there is no real test for gluten sensitivity at this time, and the symptoms may be related to other issues, including stress (who doesn’t have that?!), which makes it a not-so-black-and-white issue.

Confusing gluten free with wheat free or refined grains
As I noted above, gluten isn’t only found in wheat. I’ve heard numerous people say they eat gluten free, but all they’ve really done is replace foods like white bread with hearty whole grain versions, which may include spelt (in the wheat family), and rye (which, while not wheat, also contains gluten). If you don’t have celiac disease or gluten intolerance, these swaps may make you feel great, and lead to weight loss, because trading refined grains for whole grains ups your intake of fiber, boosts satiety, so you feel fuller longer, and better regulates blood sugar and insulin levels. These are all good things, but, in this case, totally unrelated to gluten.

Thinking gluten free equals weight loss
You may have seen a friend, co-worker, or celebrity suddenly slim down after proclaiming to give up gluten. And while going gluten free may absolutely lead to dropping a dress size (or more), the weight loss is generally caused by giving up foods that contain gluten, which are loaded with dense amounts of refined carbs, like bagels, pasta, crackers, pretzels, and baked goods. Axing these foods altogether, or replaced them with more veggies and healthy gluten-free whole grains, like quinoa and wild rice, automatically cuts excess carbs (which may have been feeding fat cells), ups fiber and nutrients, and results in soaring energy. However, going gluten free can also lead to weight gain.

Loading up on gluten-free junk food
Because gluten free has exploded in popularity, there are dozens of gluten-free options in markets these days, including carb-laden (but gluten free) versions of… bagels, pasta, crackers, pretzels, and baked goods! One popular brand of gluten free cookies pack 60 calories each, more than a “regular” sandwich cookie. And some gluten-free foods are made with refined gluten-free grains, which have been stripped of their fiber and nutrients, like white rice. The bottom line is, simply going gluten free doesn’t guarantee the loss of pounds and inches – quality and quantity still matter most.

Ignoring the rest of your diet
In addition to quality and quantity, balance is critical for feeling well and achieving weight loss. I’ve seen people trade white pasta for healthy whole grains like quinoa or wild rice, but still eat portions that are far too large, and therefore not see weight loss results. Others believe it’s OK to eat unlimited amounts of healthy gluten-free foods, like fruit and nuts. But sadly, any time you eat more than your body can use or burn, even from healthy foods, you create surpluses, which get shuttled straight to your body’s storage units – fat cells.

If you have celiac disease (get tested if you suspect you do, but you’re not sure), you absolutely must avoid gluten, and it’s important to note that it lurks in many products, from salad dressings and seasoning mixes, to vitamins, and even lip balm, so eliminating it completely is a big commitment. And if you think you may be gluten intolerant, try to avoid gluten, and monitor your how you feel. But in either case, the single most important thing you can do is to strive for a healthy, balanced, whole foods diet, the true keys to both optimal health and weight loss.

What’s your take on this topic? Are you confused about gluten free diets? Have you lost or gained weight by going gluten free? Please tweet your thoughts to @CynthiaSass and @goodhealth

Cynthia Sass is a registered dietitian with master’s degrees in both nutrition science and public health. Frequently seen on national TV, she’s Health’s contributing nutrition editor, and privately counsels clients in New York, Los Angeles, and long distance. Her latest New York Times best seller is S.A.S.S! Yourself Slim: Conquer Cravings, Drop Pounds and Lose Inches. Connect with Cynthia on Facebook, Twitter and Pinterest.Â

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May 2014 Issue

Silent Celiac Disease
By Judith C. Thalheimer, RD, LDN
Today’s Dietitian
Vol. 16 No. 5 P. 22

Learn more about this serious condition characterized by atypical signs, symptoms, and presentations that often hinder proper diagnosis and treatment.

A seemingly healthy 14-year-old boy visits his primary care physician for a routine checkup and is diagnosed with iron-deficiency anemia. A 41-year-old woman presents with severe osteoporosis. Neither patient has gastrointestinal (GI) symptoms, but after undergoing diagnostic tests, both are diagnosed with celiac disease.1

Celiac disease, an autoimmune reaction to the protein gluten, typically is considered a GI condition. However, the classic GI manifestations represent only a fraction of the possible symptoms that can emerge. Studies suggest that for every case of celiac disease that’s diagnosed because of noticeable symptoms, another eight cases go undetected.2 Patients who present with signs of the disease, such as iron-deficiency anemia, but have no GI symptoms are said to have subclinical or silent celiac disease.3

Nutrition professionals are perfectly positioned to spot silent celiac disease and prevent the long-term consequences it can cause if left untreated.

Celiac Disease’s Many Faces
Once thought to be a rare condition, celiac disease now is known to affect about 1% of Americans, or nearly 3 million people.4

“The classic gastrointestinal signs and symptoms of celiac disease include diarrhea, constipation, abdominal pain, bloating, gassiness, weight loss or weight gain, cramping, heartburn, nausea and vomiting, and lactose intolerance,” says Alicia Calvo, MPH, RD, CDE, owner of Alicia Calvo & Associates/Medical Nutrition Network and a board member of the Celiac Disease Foundation. “But everybody experiences celiac disease differently.”

For example, diarrhea often is considered a key characteristic, but only 50% of adults diagnosed with celiac disease have this symptom.2 “It’s very important to realize that celiac really isn’t a gastrointestinal disease; it’s an autoimmune condition,” says Marlisa Brown, MS, RD, CDE, a private practitioner in Bay Shore, New York, and the author of Gluten-Free, Hassle Free. “Add to that the fact that it causes an inflammatory condition, and you end up with a long list of different possible symptoms. There are no typical symptoms of celiac disease.”

Celiac disease can involve any organ system, and knowing which patients to refer for testing will require recognizing patterns in seemingly unrelated problems.3 Since celiac disease damages the intestinal lining, signs of malnutrition are common. Anemia often is the first clue that a patient isn’t absorbing nutrients properly. Signs of vitamin D and calcium malabsorption, such as hypocalcemia and muscle spasms, or coagulopathies from vitamin K deficiency may be present as well. Dental enamel problems have been reported in 20% to 70% of patients, and canker sores are common.2 Long-term malabsorption can lead to infertility or osteoporosis.3

In addition to signs of malnutrition, celiac disease can manifest as an inflammatory condition. For example, arthritis that generally resolves when a patient stops eating gluten has been reported in as many as 25% of celiac disease patients. Neurological and psychiatric disorders such as depression, migraines, and nerve damage have been reported with higher frequency in people with celiac disease.2 Some patients have liver enzyme abnormalities or liver disease that improves when gluten is removed from the diet.3

Associated Conditions
Certain autoimmune conditions, such as rheumatoid arthritis, Addison’s disease, Sjögren’s syndrome, and autoimmune thyroid and liver diseases, occur more frequently in those with celiac disease than in the general population, and individuals with Turner syndrome and Down syndrome more frequently have celiac disease. Those who present with any of these conditions should be tested.2,5

One of the most studied associations with celiac disease is type 1 diabetes, and the American Diabetes Association recommends screening for celiac disease when type 1 diabetes is diagnosed.2 “Patients with type 1 diabetes have a risk of approximately 10% for positive tissue transglutaminase antibodies, a diagnostic indicator for celiac disease,” says Jennifer M. Barker, MD, an associate professor of pediatrics in the division of pediatric endocrinology at the Children’s Hospital of Colorado. “About half of those patients will have celiac disease on biopsy. These patients often are asymptomatic. Treatment of celiac disease in patients with type 1 diabetes can be very complicated because of the requirement to follow very specific diets for both.”

Dermatitis herpetiformis, an itchy, blistering rash usually seen on the elbows, knees, buttocks, trunk, and neck, is one condition commonly associated with celiac disease that often responds well to a gluten-free diet. Many people with dermatitis herpetiformis have no GI symptoms; only about 40% have positive blood tests for celiac disease, although biopsy results from most patients will show the intestinal damage associated with celiac disease.2,4

Diagnostic Dilemmas
Currently, celiac disease can be diagnosed with a blood test to determine whether autoantibodies (antibodies that attack the body’s own tissues or cells) are present, such as antitissue transglutaminase (tTG) antibodies or antiendomysium antibodies (EMA). A biopsy of the small intestine often is performed to confirm the diagnosis.5

While diagnosing celiac disease has improved, many hurdles still remain. For example, the signs and symptoms of celiac disease mimic those of other conditions, including irritable bowel syndrome (IBS), inflammatory bowel disease, diverticulitis, intestinal infections, iron-deficiency anemia caused by menstrual blood loss, and chronic fatigue syndrome, so misdiagnoses are common.5

“Many health care providers don’t recognize the more subtle signs of celiac disease,” Brown explains. “They don’t realize, for example, that celiac disease can cause weight gain as well as weight loss, so they often don’t even consider referring overweight or obese patients for testing. Even when patients are referred, some won’t get expensive tests such as endoscopies if there’s a high out-of-pocket expense.”

Moreover, the tests themselves aren’t 100% foolproof. While both tTG and EMA tests are known to have high specificity and sensitivity, they both look for immunoglobulin A (IgA) antibodies. About 2% to 5% of patients with celiac disease have an IgA deficiency, which could account for false-negative reports.3 Brown has seen patients who’d had negative blood tests and negative biopsies but later tested positive.

RDs on the Front Lines
Dietitians and other nutrition professionals are poised to help identify and treat people with silent or atypical celiac disease. “We often have more time with patients than other health care providers, and we might be able to pick up on more information than other providers and put the pieces together,” Brown says.

“Have there been stool changes? Do they have a history of nutritional deficiencies or autoimmune disease? What is their family history? Do they have FODMAPs or other food intolerances? Ask very pointed questions. If we listen, we might pick up things that have been overlooked,” she says.

Calvo uses this line of questioning with her patients and says that dietitians should “be aware of the less typical signs and symptoms and look for patterns: A patient is diagnosed with IBS but is anemic and has fertility problems. Has she been tested for celiac disease?”

Since celiac disease is genetic, looking for familial patterns also can help. RDs should ask whether there’s anyone else in the family who has celiac disease. Are there any unusual autoimmune diseases in the family?

In the book Gluten-Free, Hassle Free, Brown created an extensive list of signs, symptoms, and conditions that can be related to celiac disease (see sidebar for an excerpt). If a client has three or more symptoms, she directs them to a gastroenterologist for an evaluation.

Brown strongly advises against removing gluten from a client’s diet before some form of testing is performed. “Gluten is difficult to digest, and for some it can be an irritant in a more serious condition. Even if going gluten free makes them feel better, patients should be tested to confirm celiac and rule out other diseases so they don’t delay diagnosis of a serious condition,” she explains.

Treating Asymptomatic Disease
Currently, celiac disease’s only treatment is a lifelong gluten-free diet. Most people notice improvement in symptoms within days of starting the diet, although it may take several years for the intestines to completely heal in adults.4 Plus, consuming even a small amount of gluten can damage the small intestine. “Getting physically sick when eating gluten is a huge incentive for sticking to a strict gluten-free diet,” says Rachel Begun, MS, RDN, a gluten-free lifestyle expert and the author of The Gluten Free RD blog. “The person that is asymptomatic doesn’t have that incentive.”

According to Calvo, “Many asymptomatic people feel better after they go gluten free. They just didn’t realize that they weren’t supposed to be so tired all the time. But it can be difficult to adhere to a strict diet if you don’t see the benefit in your day-to-day life.”

Calvo offers the following tips for improving patient adherence to a gluten-free diet in asymptomatic and symptomatic disease: “Make the diet as well balanced and reasonable as possible so they feel satisfied. Find substitutes for carbohydrates, like amaranth, noncontaminated buckwheat, garbanzo bean flour, and wild rice. These high-fiber foods are satisfying, help with regulation, and provide the whole grain nutrition patients need. There are also more and more gluten-free products out there that you can incorporate. Knowing the grains that are gluten free and incorporating them into a well-balanced and wholesome diet can really make the diet doable.”

Still, there are special challenges involved in treating silent celiac disease. “If accidently ingesting gluten doesn’t cause someone any noticeable problems, it can be difficult for them to know if they’re eating something with hidden gluten or if their food has been cross-contaminated,” Brown says. Knowing the unusual places where gluten can hide, such as in medications, communion wafers, bouillon cubes, brown rice syrup, imitation crabmeat, and self-basting turkeys, and avoiding these foods is imperative for silent celiac disease patients.

Begun recommends that patients join a local celiac disease support group and sometimes introduces them to a gluten-free mentor. “Sometimes meeting another person who has experienced a secondary condition can be an incentive for the person that doesn’t experience symptoms,” she says.

The importance of identifying clients and patients with silent celiac disease and helping them learn to live gluten free can’t be overstated. “The long-term consequences to noncompliance can be quite serious,” Begun says. “Just because a person with celiac disease doesn’t experience outward symptoms when eating gluten doesn’t mean they’re out of harm’s way. Their intestines are undergoing the same damage when eating gluten as the person who does experience symptoms.”

Left untreated, celiac disease can lead to severe complications and nutritional deficiencies. Infertility, miscarriages, or intrauterine growth retardation all have been reported.3 Long-term nutritional deficiencies can lead to rickets, osteopenia, osteoporosis, and bone fractures. There’s even the risk of serious liver disease and GI cancers.2-4

However, by watching for patterns and asking the right questions, nutrition professionals can help bring these hidden cases out into the open and make a dramatic difference in the lives and futures of those living with silent celiac disease.

— Judith C. Thalheimer, RD, LDN, is a freelance nutrition writer, a community educator, and the principle of JTRD Nutrition Education Services.

Celiac Disease Symptoms
Anemia
Behavioral changes
Bloating, gas, or abdominal pain
Bones that break easily
Bone or joint pain
Bruising
Chronic fatigue
Delayed growth as a child
Dental enamel problems
Depression or irritability
Diarrhea or constipation
Discolored teeth or enamel problems
Dry eyes
Edema (swelling, especially found in hands and feet)
Epstein-Barr
Failure to thrive (in children)
Fatigue
Frequent bowel movements
Frequent infections
Frequent illness
Hard-to-flush stools
Inability to lose weight
Indigestion
Infertility
Irritability
Lactose intolerance
Learning difficulties
Memory problems
Menstrual problems
Migraines
Mouth sores and ulcers (canker sores)
Nutritional deficiencies (such as iron, calcium, or vitamins A, D, E, and K)
Reflux (heartburn)
Seizures
Short stature
Skin problems and rashes
Tingling or numbness in hands and feet
Unexplained weight gain
Unexplained weight loss

— Reprinted with permission from Gluten-Free, Hassle Free, Second Edition by Marlisa Brown, MS, RD, CDE

1. Waldo RT. Iron-deficiency anemia due to silent celiac sprue. Proc (Bayl Univ Med Cent). 2002;15(1):16-17.

3. Wakim-Fleming J. Celiac disease and malabsorptive disorders. Cleveland Clinic Center for Continuing Education website. http://www.clevelandclinicmeded.com/medicalpubs/diseasemanagement/gastroenterology/celiac-disease-malabsorptive-disorders. Updated October 2012. Accessed February 27, 2014.

“We’re going to reveal the major signs of gluten sensitivity,” promised Dr. Oz on one of his shows several years ago.

His first sign: weight gain.

“It’s not just eating the gluten that makes us heavy,” Dr Oz claimed. “When you have a gluten sensitivity, it’s really getting your hormones out of whack, and that then leads to inflammation and swelling.”

This makes you “hold on to fat” that you should have burned off, he told his viewers. “And even if you go on a diet, if there’s gluten in there, you don’t lose weight.”

Really?

Because weight gain is anything but typical in celiac disease, the classic, well-studied illness caused by an autoimmune reaction to gluten.

“Do people gain weight because they have celiac disease that’s not diagnosed?” asks celiac disease expert Joseph Murray. “Not usually. Usually they tend to be underweight compared to the general population.” Murray is a gastroenterologist and professor of medicine at the Mayo Clinic in Minnesota.

That’s because their reaction to gluten damages their intestinal lining, so it absorbs less—not more—of the food they eat. “Some people with celiac disease don’t absorb as many calories from what they’re eating as a normal person would,” notes Murray.

common symptoms of celiac disease

“Diarrhea, bloating, gaseousness, abdominal pain, anemia, fatigue, joint pain, headache, skin rashes, and mouth ulcers,” says Murray, who is also president of the North American Society for the Study of Celiac Disease. “And in children, growth failure, short stature, and maybe developmental delay.”

Dr Oz may have been talking about non-celiac gluten sensitivity. Some people have fewer GI symptoms like gas or diarrhea when they stop eating gluten, even though they don’t have celiac disease.

Is weight gain a major sign of non-celiac gluten sensitivity? It’s hard to say, for one good reason: “We don’t know if there is a true non-celiac gluten sensitivity,” says Murray. “It could be wheat intolerance, it could be wheat sensitivity, or it could be something else entirely.”

studies in people with possible non-celiac gluten sensitivity

In 2011, Australian researchers reported that 34 patients without celiac disease had fewer GI symptoms on a gluten-free diet. “That study was probably the best evidence that there may be a condition called non-celiac gluten sensitivity,” says Murray.

In 2013, the Australians put 37 patients with possible non-celiac gluten sensitivity on a diet that was low in FODMAPS (fermentable oligosaccharides, disaccharides, monosaccharides, and polyols). FODMAPS include fructose, lactose, sorbitol, and other short-chain carbohydrates that are poorly absorbed. A low-FODMAP diet is also low in gluten, but it’s not gluten-free.

While their symptoms lessened when people ate the low-FODMAP diet, adding back gluten produced no more or fewer symptoms than adding back a placebo (whey).

“That tells us that their symptoms were probably not due to gluten,” says Murray.

“The whole premise that there is a disorder called non-celiac gluten sensitivity is way overblown. There really isn’t hard scientific evidence to support it.”

Dr Murray’s advice if you think you’re sensitive to gluten

Find out if you have celiac disease. That means a blood test for three antibodies and, if you have them, a biopsy.

Why test first? Going off gluten can make the antibodies temporarily disappear, which makes celiac harder to detect.

“If you have celiac disease, you need to know it, because you need to be gluten-free completely, and for life,” cautions Murray. “And your family members should be tested, because they’re at much higher risk for celiac disease.”

More reasons why you need to know for certain

A gluten-free diet can be expensive, and it may be low in fiber or folate or other vitamins.

And you need to know that the treatment is working. “If someone has celiac disease, they have a damaged intestine,” says Murray. “We need to make sure that it recovers or you’re at increased risk for malignancies.”

Just trying a gluten-free diet might delay the correct diagnosis.

“I’ve seen patients who have had conditions like Crohn’s disease, and the diagnosis has been delayed because they were trying out a gluten-free diet,” says Murray. “Sometimes they felt better for a few weeks, and then their symptoms started to creep back again.”

It’s not surprising that some people feel better without gluten, he adds.

“They’re eating less, at least for a while, and they may be eating healthier because they’re eating less junk food. There’s also a placebo effect.”

Murray’s bottom line

“Test first, test right is the message. This is a chronic disease that requires lifetime treatment. It requires certainty.”

Sources: Am. J. Gastroenterol. 106: 508, 2011; Gastroenterol. 145: 320, 2013; J. Gastroenterol. 108: 656, 2013.

Other relevant links:

  • Does a gluten-free diet help you lose weight and feel energetic? See: Gluten-Free Diets and Weight Loss
  • Who should be tested for celiac disease? See: Testing for Celiac Disease
  • Do more people have celiac disease? See: Is the Incidence of Celiac Disease Rising?

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This post was originally published in 2014 and is updated regularly.

Weight Gain Linked to Celiac Disease?

In the past, celiac doctors typically welcomed this “freshman 15.” But for a growing number of celiacs, weight gain doesn’t stop there—or they’re already overweight at diagnosis.

About a third of the patients at the University of Chicago’s Celiac Disease Center are overweight or obese, according to recent data. This could reflect general population trends in weight or earlier detection of celiac disease.

“We’re seeing many more celiac patients with weight concerns,” says Lori Welstead, MS, RD, LDN, a dietitian at the University of Chicago’s Celiac Disease Center. Efforts to curb unwanted weight gain on the gluten-free diet are more important than ever, she says.

Hidden Factors in Weight Gain on the GF Diet

Not everyone starting the gluten-free diet gains weight. Some gain, some lose and some stay the same, says Burkhart, noting there’s little research on weight change in people with non-celiac gluten sensitivity.

There are plenty of reasons behind weight gain. Being out of the habit of exercise due to years of not feeling well can contribute to excess pounds. Small intestinal bacterial overgrowth (SIBO), common in new celiacs, can cause feelings of hunger (due to ongoing malabsorption) and ravenous cravings for high-calorie foods, especially sweets. A sluggish thyroid can lead to weight gain and trouble shedding stubborn pounds. Feelings of deprivation can lead to overindulging and even binging.

People don’t tend to blame lack of sleep but it’s a factor in weight management, says Burkhart. Studies show people who don’t sleep enough have increased risk of weight gain. Clinicians frequently see disruptions in sleep in people with celiac disease and even in those with non-celiac gluten sensitivity, says Burkhart. Underlying anxiety or depression, which are well documented in celiac disease before and after diagnosis, can cause sleep disturbances.

So can stress. A celiac diagnosis is a stressful life event, says Burkhart. “It’s stressful to adapt to a whole new lifestyle of food planning and preparation.”

Chronic stress ups levels of cortisol, a hormone that helps regulate blood sugar, metabolism and inflammation. Ideally, cortisol levels follow a circadian-type rhythm, with highest levels in the morning to help get you going and lowest levels at night. Stress can invert these levels. Other serious medical conditions, including Addison’s and Cushing’s diseases, also can lead to abnormal changes in cortisol levels.

Cortisol’s role in weight management is a big topic in integrative medicine, says Burkhart. “There’s increasing talk about a spectrum where you’re not in a disease state, like Addison’s, but your cortisol levels are a bit above normal or they’re peaking and dipping at the wrong time of day.”

Cortisol levels can be measured with a baseline cortisol level test (usually done at 8 in the morning) or a cortisol stimulation test (typically administered by an endocrinologist). The good news is cortisol levels can be improved, much like blood pressure, through exercise, meditation and other relaxation techniques.

Managing Your Weight on A Gluten-Free Diet

Celiac experts recommend consulting a skilled celiac dietitian at diagnosis, once or twice in the months following diagnosis, and then annually. But many newly diagnosed celiacs don’t see a dietitian that often—or at all. They end up navigating the gluten-free diet all on their own.

“One of our goals it to make sure celiac patients are maintaining or moving toward a healthy weight,” says Welstead.

Healthcare practitioners will first look at what their patients are eating, says Burkhart. They discuss calorie intake, reducing unhealthy processed foods and blood sugar regulation.

“We look at diet composition, especially those unhealthy carbs that lead to insulin (blood sugar) fluctuations that promote weight gain,” she says. After that, health practitioners will zero in on other contributors, including lack of exercise, disturbed sleep patterns and ongoing stress.

Written by Christine Boyd, originally published in Gluten Free & More.

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