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Gluten, a major component of the Western diet for generations, is now being shunned by increasing numbers of health-conscious consumers. One in three American adults is trying to reduce their consumption of gluten or eliminate it entirely,  and up to 11 percent of US households follow a gluten-free diet. Globally, the gluten-free food market is worth over 2.84 billion dollars, and its value continues to rise.
People choose a gluten-free diet for a variety of reasons. Some have been diagnosed with medical issues, such as celiac disease, in which eating gluten is clearly contraindicated. A larger number, however, eschew gluten for other reasons – for example, because they feel being gluten-free improves digestion, promotes weight loss, or generally boosts health. In fact, over 40 percent of American consumers believe that gluten-free foods are beneficial for everyone.
For those who have problems with gluten, consuming it – even in trace amounts – can have wide-ranging health consequences, far beyond the digestive difficulties most people associate with these conditions. Symptoms vary based on the specific gluten-related disorder and the individual’s unique sensitivity. For some people, the clinical manifestations of celiac – which can include depression, anxiety, or other mental health issues – occur in the absence of apparent digestive symptoms. In these cases, the connection between diet and disease or dysfunction may not be suspected.
Despite the rising popularity of gluten-free diets – and the many testimonials from people who report that their health and well-being have improved since adopting them – some medical professionals and media sources argue that avoiding gluten is unwarranted for the general population. For consumers, this can lead to uncertainty about the value of going gluten-free. Questions may arise, such as: How do you know if a gluten-free diet is right for you? Will it truly benefit your health? Are there any downsides to it? To explore these questions, we first must examine what gluten is and how the human body reacts to it.
What is gluten and where is it found?
When most people use the term gluten, they are referring to a group of proteins found in the seeds or kernels of the cereal grasses wheat, barley, rye, and triticale (a hybrid of wheat and rye). All types of wheat contain gluten, including heirloom varieties, such as spelt, einkorn, and emmer, although some people claim to better tolerate these. Non-gluten grains – some of which are pseudocereals, or non-grasses – include amaranth, buckwheat, rice, millet, quinoa, sorghum, and teff.
Gluten is actually a complex of two types of proteins, prolamins and glutelins, which vary across species of grain. Technically, the seeds of all cereal grasses contain prolamins and glutelins. However, the prolamins in the official “gluten grains” – gliadin in wheat, secalin in rye, and hordein in barley – are generally the most problematic ones for people with celiac disease and other gluten-related disorders.
Oats can be certified gluten-free in the US unless they are contaminated with gluten grains (which is extremely common), but they cannot be certified as such in New Zealand or Australia, as oats contain avenin, a related prolamin. Some celiacs cannot tolerate oats, and there is some controversy as to whether they should retain their gluten-free status in this country. Corn, which contains the prolamin zein, is not generally considered a gluten-containing grain, although it may be problematic for some of those with gluten-related issues. The proteins in rice are generally safe for celiacs, and glutinous rice gets its name not from gluten but from its stickiness when cooked, which is a function of its specific carbohydrate content.
Unique aspects of gluten digestion
There is something about gluten that sets it apart from all other proteins in the human diet. Virtually no one – not even those who tolerate it with no apparent adverse effects – can completely digest it.[5(p23)] When we consume proteins, our digestive enzymes break them down first into small peptide chains and then into amino acids, which are absorbed by the small intestine and then transported throughout the body for use as fuel or as building blocks of other proteins. All the proteins we consume can be completely broken down and assimilated, except for the prolamins and glutelins found in gluten. This results in the presence of undigested gluten peptides in the upper part of the small intestine.
According to renowned gastroenterologist Alessio Fasano, MD, these peptides are detected by the gut’s immune system and interpreted as foreign invaders, prompting immune responses that resemble those triggered by pathogenic bacteria.[5(p25)] While everyone undergoes this immune challenge, it is overcome with no apparent ill effect in the majority of people. Only a minority develop gluten-related disorders.
However, in those with gluten-related issues, this immune response can lead to chronic inflammation and, in the case of celiac disease, severe intestinal damage. Moreover, if undigested or partially digested gluten particles (and other harmful substances) reach the bloodstream, systems throughout the body – including the nervous system, immune system, and hormonal systems – can be affected.
It is now recognized that a spectrum of gluten-related disorders exists, and which condition develops is influenced by both genetic susceptibility and environmental factors. Three of the main disorders are celiac disease, wheat (or other gluten grain) allergy, and non-celiac gluten sensitivity. Although all of these are best managed by gluten avoidance, the strictness of the diet required – and the ramifications of violating it – may vary between them.
Celiac disease, also known as celiac sprue, is an autoimmune disorder that damages the small intestine, as well as other organs and systems throughout the body. When gluten is consumed, the body mounts an immune reaction that results in villous atrophy, erosion of the microscopic fingerlike projections on the lining of the small intestine that play a role in nutrient absorption. As many as 1 in 133 Americans – almost 1 percent of the population – may have celiac disease, and its prevalence has been increasing in recent decades. However, it is estimated that 83 percent of Americans with celiac remain undiagnosed or have been misdiagnosed with other conditions, partly because its symptoms can vary so widely.
The classical symptoms of celiac disease are severe diarrhea and issues related to malabsorption of nutrients. However, the majority of adult celiacs do not have these symptoms. Some have problems related to impaired digestion, such as abdominal pain, constipation, bloating, gas, and acid reflux. Fatigue and weight loss are also common. In many people, however, gastrointestinal issues are mild or unnoticeable, and symptoms may seem unrelated to celiac; these can include joint pain, chronic migraines, recurring miscarriages, low bone mass, erosion of dental enamel, mouth ulcers, and elevated liver enzymes. Moreover, celiac frequently is “silent,” with no obvious symptoms, despite ongoing intestinal damage and chronic inflammation.
For those with celiac, continuing to consume gluten causes more than mere discomfort. As long as gluten remains in the diet, intestinal damage progresses, leading to a variety of other health conditions, such as dermatitis, osteoporosis, infertility, iron-deficiency anemia, type 1 diabetes, and intestinal cancers.[7,8,9] Celiac disease can also have various neurologic and psychiatric complications, including ataxia, epilepsy, muscular sclerosis, cognitive impairment, anxiety, depression, and schizophrenia.[7,10] Neurological symptoms in children can include ADHD and learning disabilities.
Celiac disease has a strong genetic component, with two genetic markers – HLA-DQ2 and HLA-DQ8 – primarily associated with the condition, and other genes potentially playing minor roles. However, not everyone with these markers develops celiac. Various environmental triggers (in addition to gluten ingestion) seem to play a role in initiating the disease process. Possible triggers that may activate celiac include emotional stress, surgery, childbirth, and viral infections.
Because so many cases of celiac disease are non-classical or silent, diagnostic testing may be advisable whenever a person suffers from an unexplained chronic ailment. Having a close family member who has been diagnosed with celiac disease should strongly suggest testing, as first-degree relatives of celiacs have a markedly increased risk of developing it.
Initial screening for celiac disease generally involves blood tests to measure levels of certain antibodies that are produced in response to gluten consumption. The most sensitive and specific of these tests are tissue transglutaminase (tTG) and deamidated gliadin peptide (DGP). It’s important to note that all these blood tests may report false negatives if a person is already on a gluten-free diet. For this reason, many health professionals advise that patients be screened for celiac disease before giving up gluten.
Genetic testing for the HLA-DQ2 and HLA- DQ8 protein variants may be recommended if blood tests are inconclusive or the person is already gluten-free. These tests cannot confirm the presence of celiac disease, as up to 40 percent of the population will test positive for one of these markers. However, when taken together, they are 99 percent accurate in ruling it out.
In order to definitively confirm a celiac diagnosis, an intestinal biopsy is required. This may be recommended by one’s doctor if either antibody or genetic testing yields positive results. Generally, the lining of the small intestine will be biopsied and the samples examined for signs of inflammation and damage. Significantly, results will not be accurate unless the patient has eaten a gluten-containing diet for at least four weeks prior to the procedure.
Studies are underway to find new treatments for celiac disease. To date, however, the only proven effective treatment is lifelong adherence to a strict gluten-free diet. This means virtually complete avoidance of all sources of gluten, even trace amounts. While levels of sensitivity to gluten contamination vary slightly among celiacs, one study found that daily consumption, over a 90-day period, of 50 mg of gluten – the amount found in approximately 1/70th of a slice of wheat bread – tended to cause renewed villous atrophy. One patient had a “clinical relapse” with daily consumption of only 10 mg of gluten. This can make it potentially challenging to find safe foods. The FDA has determined that foods can be labeled “gluten free” if they do not contain gluten in excess of 20 parts per million. While many celiacs can tolerate that amount of gluten without provoking obvious symptoms, some cannot. Moreover, damage to the villi can take place in the absence of symptoms.
Fortunately, following a gluten-free diet can alleviate symptoms and normalize antibody levels. People may notice symptomatic improvement in as little as several weeks, although it generally takes considerably longer for the intestines to fully heal. Children tend to recover more quickly than adults, and they have a 95 percent likelihood of achieving complete healing of their intestinal mucosa. In adults, however, full mucosal recovery can take over a year and does not always occur, even with strict adherence to the diet.
Allergy to wheat (or related gluten grains) is discussed here mainly to differentiate it from other gluten-related disorders. Wheat is actually one of the most common food allergens, likely due, in part, to the complexity of gluten, which is made up of hundreds of different proteins. Data suggests that 0.1 to 0.3 percent of Americans – about 900,000 people – are allergic to wheat.[5(p30)]
If a person is sensitized to wheat, ingesting it will result in the production of antibodies (usually IgE) that circulate through the bloodstream, triggering an allergic response, generally within minutes or up to two hours. The digestive system, skin, or respiratory tract may be affected. The most common digestive symptoms are abdominal pain, nausea, vomiting, and diarrhea. Other signs can include swelling of the mouth or throat, hives, atopic dermatitis, nasal congestion, headache, itchy eyes, asthma, chronic cough or throat clearing, and anaphylaxis. Wheat can also provoke allergic responses through inhalation (e.g., occupational or baker’s asthma) or skin contact in susceptible individuals. While skin prick tests or blood tests can help to diagnose a wheat allergy, both false negatives and false positives are possible (false positives are more common), and your physician may also suggest behavior-based tests, such as keeping a food diary or doing an elimination diet and food challenge.
Unlike celiac disease, wheat allergy is not an autoimmune disorder and does not damage the intestinal villi. Also, it is not necessarily a lifelong condition. As with many other food allergies, tolerance can develop over time, especially if the sensitivity developed in infancy. Tolerance is less likely to develop if the allergy began in adulthood. Management of the condition generally consists of avoiding wheat.
Non-celiac gluten sensitivity
Until quite recently, people who reported celiac-like symptoms without testing positive for celiac disease have had difficulty getting a proper diagnosis. Some have even been told by their physicians that – despite years of suffering – their symptoms were in their imagination. Although some type of gluten intolerance was hypothesized in the 1970s, not until 2011 did an international panel of experts reach consensus on a definition of what is now called non-celiac gluten sensitivity: “a non-allergic and non-autoimmune condition in which the consumption of gluten can lead to symptoms similar to those seen in CD [celiac disease].” By definition, these symptoms arise in the absence of celiac-specific antibodies and, generally, with no intestinal damage such as is seen in celiac.
Despite growing recognition of gluten sensitivity as a valid member of a spectrum of gluten-related disorders, debates over its existence and its prevalence continue in the press. Actually, determining the prevalence of gluten sensitivity is somewhat problematic, as there are, as yet, no biomarkers that trigger its diagnosis. Instead, it is a disease of exclusion, in which symptoms are present, but tests for celiac and wheat allergy yield negative results. Estimates of non-celiac gluten-sensitive people range from 0.5 to 13 percent of the population, with the Center for Celiac Research at Massachusetts General Hospital providing an estimate of 6 percent, or almost 20 million Americans.[5(p30)] The precise figure is unknown, largely because many people with this condition self-diagnose and put themselves on gluten-free diets without consulting a healthcare practitioner.
This was my own case, after decades of sometimes-debilitating pain and embarrassing gastrointestinal symptoms. As a teenager in the 1970s, I was prescribed muscle relaxants for my severe intestinal cramping and was told, contradictorily (by two doctors in the same practice), to drink lots of milk and to give up dairy. Later, I was diagnosed with irritable bowel syndrome and, still later, with Crohn’s disease. Not once did a doctor mention the possibility of any problem with wheat or gluten. Yet, when I diagnosed myself with “gluten intolerance”  years ago and put myself on a strict gluten-free diet (after doing a series of two self-imposed elimination trials and gluten challenges), almost all my digestive issues resolved and, as an unexpected bonus, my morning “brain fog” disappeared. I later determined that my remaining, minor digestive symptoms were triggered by dairy consumption.
Symptoms of gluten sensitivity can resemble those of irritable bowel disease, to an extent. The most common intestinal symptoms are bowel irregularity (diarrhea and/or constipation), abdominal pain, gas, and bloating. Extra-intestinal and systemic symptoms can include the above-mentioned “brain fog,” fatigue, headache, joint or muscle pain, leg or arm numbness, eczema, and anemia, among others. Unlike celiac disease, gluten sensitivity does not have an autoimmune component, and no villous atrophy results. However, it can have severe and even disabling effects, and can greatly impact quality of life, affecting work, schooling, and personal relationships. One study found no difference between celiacs and those with gluten sensitivity in prevalence of anxiety and depression. Links to neuropsychiatric conditions such as autism spectrum disorders and schizophrenia have been observed in some studies, although controversy exists in this area.
Many people resort to self-diagnosis for gluten sensitivity, as I did, often after the medical profession has offered no relief for their symptoms. Unfortunately, self-diagnosis presents a number of challenges. One is that, unlike allergic reactions to food, which tend to manifest quickly, it can take days for a person with gluten sensitivity to notice a reaction after ingesting it. Also, the threshold for reactivity varies from person to person, with some having extreme reactions to even trace amounts of gluten, which may be difficult to exclude from the diet until one is accustomed to looking for hidden sources. Lastly, the amount of time for all traces of gluten to clear from the system may vary between individuals. In my case, a series of two three-week gluten-elimination diets, each followed by a challenge in which gluten was consumed at several consecutive meals, was enough to clearly indicate the problem. However, some health professionals advocate a 60- to 90-day elimination diet before attempting a gluten challenge. Given these issues and the potential difficulties of maintaining a strict gluten-free diet, diagnosis would be best attempted under the guidance and supervision of a knowledgeable healthcare practitioner.
Leaky gut & leaky brain
Most readers will be familiar with the concept of leaky gut, or increased intestinal permeability. When the intercellular tight junctions that maintain the barrier between the intestines and the bloodstream open inappropriately, they allow uncontrolled passage of undigested food particles, microbes and their waste products, foreign antigens, and other toxins into the bloodstream. This may ultimately result in a wide range of inflammatory and autoimmune conditions, such as rheumatoid arthritis, type 1 diabetes, Crohn’s disease, and celiac.
Zonulin, a protein made by intestinal and liver cells – and recently discovered by Fasano and his research team – is thus far the only known physiologic modulator of these tight junctions. Zonulin acts on the tight junction protein complex to impair epithelial barrier function. Put simply, increases in zonulin cause increases in gut permeability. Although numerous factors can contribute to increased permeability, the two greatest triggers of zonulin release are foreign pathogenic bacteria in the small intestine and – in some people – gliadin. The presence of bacteria such as E. coli results in the increased release of water into the bowel, provoking diarrhea in order to flush the invaders away. However, the zonulin response to gliadin allows a bidirectional movement across the tight junctions; not only can increased water move into the bowel but intestinal contents can enter the bloodstream.
Research indicates that both people with celiac disease and those with gluten sensitivity have zonulin levels much higher than are found in the general, non-gluten-sensitive population. Compromised intestinal barrier function – leaky gut – is known to be a component in celiac disease. However, research findings are less conclusive in regard to gluten sensitivity, with some studies indicating intact barrier function in the gluten sensitive and others showing impairment. Further research is needed in this area.
Less well known than leaky gut is its analog in the nervous system: leaky brain. This is an increased permeability in the blood-brain barrier, whose role is to allow the passage of essential nutrients to the central nervous system while blocking the entry of most other substances. Significantly, zonulin is also a modulator of blood-brain permeability, and increased levels of it loosen the tight junctions of the barrier, just as they do in the intestines. Toxins and other harmful particles in the bloodstream can then more easily enter the brain, where they can cause inflammation and trigger or contribute to neurological and psychiatric diseases and disorders. For example, brain inflammation can decrease the firing rate of neurons in the frontal lobe in people with depression. Neurogenic inflammation is also associated with cases of anxiety, brain fog, and autoimmune brain disorders.
A hidden factor in neurological and psychiatric illness
The relationship between celiac disease and various neurological and psychiatric conditions has been recognized and studied for more than 40 years. It is known that up to 22 percent of celiacs develop such disorders.  Peripheral and other neuropathies are often seen in adults with celiac, and gait ataxia (difficulty walking), seizure disorders, and dementia are among the other neurological conditions most frequently observed. Psychiatric symptoms and disorders that have been associated with celiac disease or gluten sensitivity include anxiety disorders, depression, ADHD, autism spectrum disorders, and schizophrenia. However, as stated earlier, the fact that gluten can play a significant role in neurological and psychiatric problems – in the absence of digestive symptoms – is not generally known. Many people suffer from chronic psychiatric or neurological conditions, never realizing that eating gluten may be a cause.
One definition of gluten sensitivity (including, in this instance, celiac disease), provided by researchers, is “a state of heightened immunological responsiveness in genetically susceptible people.” They also stated that “gluten sensitivity can be primarily and at times exclusively a neurological disease.” If I could convey only one message to readers of this article, it would be that. Once we know that celiac and gluten sensitivity can present without bowel-related symptoms, we have a new perspective with which to approach the many neurological and psychiatric disorders of unknown etiology that plague us. Significantly, one review article found that up to 57 percent of people with “neurological dysfunction of unknown origin” test positive for antibodies to gliadin – meaning that they exhibit elevated immune system reactivity to gluten.
Of course, the real test – the one that means the most to us as individuals – is whether removing gluten from our diet will improve our health and quality of life. Many times, the evidence indicates, it will. Research on people with celiac and gluten sensitivity has shown, for example, that various types of anxiety and depressive symptoms have improved in patients following a gluten-free diet. Numerous studies show that eliminating gluten from the diet can have marked benefits for some people with symptoms of schizophrenia. Following a gluten-free diet for six months significantly reduced symptoms of ADHD in the majority of subjects in one study.
Giving up gluten
If you have decided to go gluten-free, your biggest question may be: How? The simplest answer is: All at once. It’s not the kind of thing you can do gradually, reducing your gluten consumption to once every few days or enjoying a slice of wheat toast on the weekend as a reward for being good all week. Although some people with gluten-related problems seem to tolerate a small quantity of gluten grains, most need to eliminate even trace amounts.
So, learn to read labels and look for gluten-free logos on packages. Educate yourself on hidden sources of gluten. If you’re not sure about a product, look it up online, and email the manufacturer if you have questions. Call ahead to restaurants and make sure they have gluten-free options on the menu. Ask them to cook your food in a pan with clean, unused oil – not on the grill where they have just toasted a hamburger bun. If you’re highly sensitive, avoid bulk grocery bins and salad bars where there could be cross-contamination with gluten-containing foods. Check with your pharmacist to make sure there’s no gluten in your medication, and if there is, find out if there is a gluten-free alternative. Make sure there’s no gluten in your nutritional supplements either; it’s sometimes present in excipients. Do your research. There are many excellent online and printed guides and resources for learning to live gluten-free.
Be aware, however, that just because a product is gluten-free doesn’t necessarily mean that it’s healthy. Some gluten-free products are highly processed, with lots of starches, sugars, artificial sweeteners and colors, and other nonbeneficial ingredients. In addition, going gluten-free can reduce your nutrient intake if a large part of your diet is made up of processed foods. Gluten-free pastas and breads, for example, are generally not fortified with iron and B vitamins, as wheat-based products are. Avoid nutrient deficiency by relying on whole foods as much as possible. For most people on gluten-free diets, quinoa and millet are excellent choices for whole grains. Also, don’t assume that gluten-free foods are necessarily low calorie. Some manufacturers use a lot of sugar and refined oils to make their products more palatable.
The good news is that it’s much easier to find a wide selection of gluten-free products than it was just a few years ago. The bad news is that manufacturers have learned that many consumers will pay premium prices for gluten-free breads, pastas, and frozen dishes. Living gluten-free, unless you rely heavily on whole foods or do your own cooking and baking from scratch (including grinding your own flour), can be an expensive proposition. However, if you find it improves your health, it can be worth every penny.
Of course, sometimes a person does everything right, and the gluten-free diet simply doesn’t work. Perhaps you have strictly followed a gluten-free diet for months, and you just haven’t seen as much improvement in your symptoms as you’d hoped. Maybe the problem isn’t gluten, after all. With a wheat allergy, for example, you may be reactive to the wheatgrass in your green drink, even though the product is accurately labeled “gluten-free.” There are various substances in wheat and other gluten grains that one can react to.
Perhaps you have multiple food sensitivities, such as both wheat and dairy – a common trigger for many people with gluten-related disorders. For some with intolerance to milk products, choosing raw, grassfed dairy or traditionally fermented products may help to relieve symptoms. For others, it’s not enough. (I found I was senstive even to raw goat kefir.)
It’s also possible that you might be reactive to a group of sugars and other carbohydrates known as FODMAPS (fermentable oligosaccharides, disaccharides, monosaccharides, and polyols). These are found in wheat, rye, and barley, as well as in many other common foods, including dairy, coconut products, fibrous vegetables, and certain fruits. Symptoms of FODMAPS intolerance can include abdominal pain, bloating, and distension; gas; nausea; diarrhea or constipation; and fatigue. Giving up gluten grains could lower the amount of FODMAPS you consume, thus relieving your symptoms to an extent – although gluten itself has nothing to do with the problem.
Lastly, other medical conditions, such as Crohn’s disease or small intestine bacterial overgrowth, could be causing your symptoms. (Keep in mind that these conditions often co-exist with celiac.) While a healthy gluten-free diet has no harmful side effects, an incorrect diagnosis could result in the delay of needed treatment. Thus, it is important to work with a healthcare practitioner to screen you for other possible health conditions before assuming that your symptoms are strictly gluten related.
If you do undertake a gluten-free diet, do so wisely, choosing whole foods whenever possible. Good nutrition is a vital part of recovery from any health problem. You might also consider taking other measures to help rebuild your intestinal health. Using a high-quality probiotic with an assortment of live strains of microflora would be an excellent place to start. Many people see benefit from following a diet such as GAPS, which focuses on healing leaky gut.
Remember that you are making a commitment to yourself to undertake a major lifestyle change. Following a strict gluten-free diet changes the way you visit people’s homes, the way you travel (pack food with you), and the way you dine out, in addition to how you shop and prepare your meals. Be forewarned that sometimes the people around you (even restaurant staff) may be less than understanding. Also, prepare yourself for the likelihood that, every so often, a mistake – by a well-meaning friend, a restaurant employee, or even you – will result in your accidental ingestion of gluten. At that point, there’s not much you can do but continue with the diet and wait for your symptoms to abate.
So, is a gluten-free diet right for you? If you have celiac disease, that question can have only one answer – yes – in order for you to avoid serious autoimmune issues. But if you are among the many Americans who merely suspect a gluten intolerance, you’ll probably want to confirm its benefits for you before committing to a long-term gluten-free diet. If, in fact, you do have gluten sensitivity, you may be amazed at the positive changes that going gluten-free can bring. It will likely lead to a dramatic improvement in your health and your quality of life.
About the Author
Roberta Louis is managing editor of the Price-Pottenger Journal of Health and Healing and a contributing editor at Well Being Journal. She is a freelance writer and editor specializing in complementary and alternative healing methods. Roberta resides in the Pacific Northwest and is currently pursuing an interest in herbal medicine.
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Published in the Price-Pottenger Journal of Health and Healing
Fall 2016 | Volume 40, Number 3
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