Gluten intolerance: Symptoms, types, diagnosis, how to cope

In today’s health-conscious world, gluten intolerance is no stranger to most of us. But what exactly is it? 

Imagine attending your favorite dinner party only to find out you can no longer indulge in freshly baked bread, decadent pasta, or that delicious slice of cake. For individuals with this condition, this is a reality they live with daily. 

Gluten, a protein found in wheat, barley, and rye, becomes their foe, triggering uncomfortable and severe symptoms. 

Whether you’re here because of your health concerns, you know someone grappling with gluten intolerance, or to satisfy your curiosity, this article will provide a comprehensive understanding of this common yet often misunderstood condition.

What is gluten intolerance? 

Gluten intolerance is a disorder in which the body cannot tolerate gluten, a protein in grains like wheat, barley, and rye. It’s not the same as a wheat allergy or celiac disease, although the symptoms may be similar [1]. It is also referred to as non-celiac gluten sensitivity (NCGS). 

When it comes to consuming gluten, different people react in different ways. For the majority, it’s simply part of a balanced diet and doesn’t cause any adverse effects. 

However, consuming gluten can lead to a series of uncomfortable or even severe symptoms for a subset of the population. This reaction is what we broadly refer to as gluten intolerance.

Its exact causes still need to be better understood. Some research suggests that people may not be sensitive to gluten but to a particular carbohydrate in many foods. Their bodies don’t absorb the carbohydrate they should, which stays in their guts and ferments, causing sickness [2].

If you think you’re gluten intolerant, consult a doctor to rule out other conditions like celiac disease or a wheat allergy [3].

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What is the science behind gluten intolerance?

The complexities of gluten intolerance arise because it encompasses several distinct conditions, each with its underlying mechanisms. The primary ones include celiac disease, non-celiac gluten sensitivity (NCGS), and wheat allergy.

Autoimmunity and gluten

Celiac disease is the most extensively researched form of gluten intolerance. It’s an autoimmune disorder triggered by gluten in genetically predisposed individuals.

Autoimmune disorders happen when the body’s immune system mistakenly attacks its cells. In celiac disease, gluten intake leads to an immune response that primarily targets the small intestine, damaging its lining and impairing its ability to absorb nutrients.

More specifically, the trouble starts when gliadin, one of the main proteins in gluten, enters the small intestine. In people with celiac disease, the body views gliadin as a foreign invader and mounts an immune response. 

When you have this type of response, it can lead to inflammation and harm to the villi. These small, finger-like projections normally line the small intestine and help with nutrient absorption. Over time, this damage can lead to malnutrition and other health problems.

Non-Celiac Gluten Sensitivity
Photograph: wirestock/Envato

Non-Celiac Gluten Sensitivity

Then there’s non-celiac gluten sensitivity (NCGS), a less well-understood condition. People with NCGS experience many of the same symptoms as those with celiac disease—such as abdominal pain, bloating, and fatigue—but do not test positive for celiac disease in diagnostic tests.

The mechanism underlying NCGS is still largely unknown, but current theories suggest it might involve an abnormal immune response or increased intestinal permeability (also known as ‘leaky gut syndrome’).

Gluten Ataxia

Gluten ataxia is another gluten intolerance much rarer than celiac disease or NCGS. This disorder that affects the immune system targets the nervous system, specifically the cerebellum, which controls motor functions in the body.

In individuals with gluten ataxia, the immune system attacks the cerebellum in response to gluten ingestion, leading to problems with balance and coordination. 

While this condition is relatively rare, it illustrates the far-reaching potential effects of gluten in certain individuals.

Wheat allergy

Finally, wheat allergy is a classic allergic reaction to wheat, similar to other food allergies. Upon ingesting wheat, the immune system releases IgE antibodies and histamines, leading to various allergic symptoms ranging from mild (hives and itching) to severe (like anaphylaxis).

In summary, the science behind gluten intolerance is multifaceted and involves various aspects of the immune system and gut health. 

Our understanding of these mechanisms and their impacts on health continues to evolve as research continues.

What is the role of gluten in diet?

In grains like wheat, barley, and rye, gluten acts as a binder, holding food together and adding a “stretchy” quality, like in dough. Wheat grains contain a complex mixture of hundreds of related but distinct proteins, primarily gliadin and glutenin. This mixture is the primary storage protein found in wheat [4].

Gluten is a heat-stable substance that can serve as a binder and extender in food. It is often added to processed foods to enhance their texture, moisture retention, and flavor.

If you don’t have a gluten intolerance, there isn’t any evidence to suggest that following a gluten-free diet is beneficial, especially if you consume processed gluten-free products.

However, for people with celiac disease or non-celiac gluten sensitivity, a gluten-free diet is essential for managing signs and symptoms. 

Many people who don’t have a gluten-related medical condition also follow a gluten-free diet, claiming that it improves their health, helps with weight loss, and increases their energy. However, further research is needed to verify the accuracy of these benefits [5].

When following a gluten-free diet, replacing the nutrients in gluten-containing whole grains, such as fiber, B vitamins, magnesium, and iron is crucial. These nutrients are essential for maintaining a healthy diet.

Along with consuming naturally gluten-free foods in their whole form like fruits, vegetables, legumes, nuts, seeds, fish, eggs, and poultry, the following whole grains are also inherently gluten-free: quinoa, rice, corn, millet, sorghum, teff, and oats (if labeled gluten-free).

How to recognize gluten in food?

It’s crucial to distinguish gluten on food labels since it can be present in various food items. Check out these tips on how to spot gluten in your food:

1. Look for wheat, barley, and rye on the ingredient label. These are the most common sources of gluten [6].

2. Check for other gluten-containing ingredients like wheat protein, wheat starch, wheat flour, bread flour, bulgur, malt, and couscous.

3. Be aware that gluten can also be found in less obvious products like lunch meats, soy sauce, and some processed foods [7].

4. Look for third-party certifications that indicate a product is gluten-free.

5. Read the “Contains” allergen statement at the bottom of the label. If wheat is listed, the product is not gluten-free.

6. Avoid rye, barley, brewer’s yeast, malt extract, malt vinegar, and malt flavor.

7. Be cautious of oats, oat bran, oat flour, yeast (autolyzed or extracted), the barley’s smoke flavor, and the barley’s natural flavor. These ingredients may be safe for some people with gluten intolerance but not for those with celiac disease.

What are the symptoms of gluten intolerance?

Gluten intolerance, also known as non-celiac gluten sensitivity (NCGS), can cause a range of symptoms that can vary from person to person. Here is a symptoms checklist for you:

  • Diarrhea and constipation
  • Bloating and gas
  • Abdominal pain and discomfort
  • Fatigue
  • Headaches and migraines
  • Brain fog and trouble concentrating
  • Anxiety and depression
  • Joint pain
  • Skin rash

It’s important to note that these symptoms can occur shortly after consuming gluten, and the exact combination of symptoms can vary. 

Some people may also experience symptoms like anemia, nausea, vomiting, and trouble breathing [8].

How is gluten intolerance diagnosed?
Photograph: micens/Envato

How is gluten intolerance diagnosed?

Diagnosing gluten intolerance can be a complex process. It typically involves reviewing the patient’s medical and family history, evaluating symptoms, and conducting various medical tests.

Medical history

The first step in diagnosing is thoroughly reviewing the patient’s medical history. 

The doctor may ask about the frequency and severity of symptoms, the timing of when symptoms occur (particularly concerning meals), any known family history, and any changes in the patient’s general health.

Physical exam

A physical examination can indicate whether a patient suffers from gluten intolerance. 

The doctor will look for signs of malnutrition or deficiencies caused by poor nutrient absorption, such as being underweight, having a swollen abdomen, or showing signs of certain skin conditions.

Blood tests

If gluten intolerance is suspected, blood tests can help identify certain markers. In the case of celiac disease, doctors typically look for elevated levels of certain antibodies, like anti-tissue transglutaminase (tTG) and endomysial antibodies (EMA). 

It’s important to note that these tests are not definitive, and false positives or negatives can occur.

There are no validated diagnostic tests for suspected non-celiac gluten sensitivity [9]. 

A diagnosis is usually made based on the symptoms and their improvement on a gluten-free diet, along with the exclusion of celiac disease and wheat allergy.

Endoscopy

If blood tests indicate the possibility of celiac disease, an endoscopy may be performed [10]. This procedure allows doctors to examine the small intestine visually and, if necessary, take a biopsy. 

The biopsy involves removing a small piece of tissue from the intestinal lining for further examination. Damage to the villi—the small, finger-like projections in the intestine that help absorb nutrients—can confirm a diagnosis of celiac disease.

Dietary response

Another approach to diagnosing, particularly non-celiac gluten sensitivity, is to monitor the patient’s response to a gluten-free diet. If symptoms improve significantly after removing gluten from the diet, it can suggest gluten intolerance.

However, it’s crucial not to start a gluten-free diet before diagnostic testing for celiac disease, as it can interfere with the results. 

Therefore, it’s essential to get a proper diagnosis under the supervision of a healthcare provider before making significant dietary changes.

Diagnosing gluten intolerance can be lengthy and often frustrating, but it’s a critical step in managing the condition and improving the patient’s quality of life.

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How to live with gluten intolerance?

Living with gluten intolerance involves significant lifestyle modifications, primarily centered around dietary changes. 

However, with patience, information, and a positive outlook, living a fulfilling and healthy life is possible despite this condition.

1. Understand the condition

The first step to managing gluten intolerance effectively is understanding the condition thoroughly. 

This means knowing how gluten affects your body, what foods contain gluten, and how to manage symptoms. It’s also essential to educate yourself about cross-contamination, hidden sources of gluten in processed foods, medications, and even cosmetics.

2. Adopt a gluten-free diet

The cornerstone of managing gluten intolerance is adopting a gluten-free diet. This involves eliminating all foods that contain wheat, barley, and rye. 

While this can seem challenging initially, many gluten-free alternatives are now readily available. These include gluten-free bread, pasta, and naturally gluten-free grains like rice, quinoa, and certain oats.

3. Plan and prepare meals

Meal planning and preparation become crucial when living with gluten intolerance. This can help ensure you consume a balanced, nutritious diet and prevent accidental gluten consumption. Additionally, learning to read food labels for hidden gluten is a must.

4. Navigate social situations

Dining out or attending social gatherings can present challenges. It’s often helpful to call restaurants in advance to check if they offer gluten-free options. Also, if traveling, consider carrying gluten-free snacks if gluten-free options are unavailable.

5. Maintain a support network

Having a strong support network can be incredibly beneficial. This can include healthcare providers, dietitians, support groups, and understanding family and friends. 

Support groups, both in-person and online, can provide advice, empathy, and practical tips to those living with gluten intolerance.

6. Get regular health check-ups

Regular check-ups with healthcare providers are important, as people with gluten intolerance, especially those with celiac disease, are more likely to develop certain health problems. These check-ups can help identify and manage these issues early.

Living with gluten intolerance can certainly be challenging, especially in the beginning. But with the right resources and support, individuals can manage their symptoms effectively, enjoy a diverse diet, and maintain a high quality of life. 

What is the impact of gluten intolerance on individuals?

Gluten intolerance can impact individuals on multiple levels, including physical health, mental well-being, and overall quality of life.

Physical health

The most immediate impact of gluten intolerance is on physical health. Consuming gluten can trigger symptoms from mild (bloating, gas, and abdominal pain) to more severe (chronic diarrhea, weight loss, and fatigue).

In celiac disease, damage to the small intestine can lead to malabsorption of nutrients, causing deficiencies in key vitamins and minerals. 

This malabsorption can lead to anemia, osteoporosis, and delayed growth and development in children.

Mental health

The impact of gluten intolerance isn’t limited to physical symptoms. It can also affect mental health. 

Individuals with gluten intolerance may experience ‘brain fog,’ depression, anxiety, and mood swings [11]. Some people with celiac disease also report symptoms like headaches and migraines.

Quality of life

Living with gluten intolerance can significantly affect a person’s quality of life. Adhering to a strict gluten-free diet can be challenging and stressful, impacting social interactions and causing anxiety around meals. 

It may also lead to feelings of isolation or being ‘different,’ especially in social situations involving food.

Long-term health implications

Untreated or poorly managed gluten intolerance, especially celiac disease, can lead to serious long-term health complications. These can include autoimmune disorders, infertility, neurological conditions, and in rare cases, intestinal cancers.

However, with an early diagnosis and proper management, most individuals with gluten intolerance can lead healthy, symptom-free lives. 

7 Myths and misconceptions about gluten intolerance

In recent years, gluten intolerance has become a widely recognized health issue. However, with this recognition has come a fair share of myths and misconceptions. Here, we debunk seven of the most common ones.

1. Gluten intolerance and celiac disease are the same

While celiac disease is a form of gluten intolerance, not all gluten intolerance is celiac disease. 

Gluten intolerance encompasses a spectrum of conditions, including celiac disease, non-celiac gluten sensitivity, and wheat allergy, each with different underlying mechanisms and levels of severity.

2. Gluten intolerance is just a fad

Gluten intolerance is a scientifically recognized condition with clear physiological impacts. 

While some people may choose to follow a gluten-free diet for reasons other than gluten intolerance, this doesn’t negate the fact that consuming gluten leads to severe health problems for some people.

3. If you don’t have digestive symptoms, you don’t have gluten intolerance

Symptoms of gluten intolerance extend beyond the digestive system. Other symptoms can include fatigue, joint pain, ‘brain fog’, depression, and skin rashes. Therefore, the absence of digestive symptoms doesn’t rule out gluten intolerance.

If you don’t have digestive symptoms, you don’t have gluten intolerance
Photograph: svetlaya_83/Envato

4. A gluten-free diet is healthier for everyone

A gluten-free diet is essential for people with gluten intolerance. However, a gluten-free diet offers no specific health benefits for those without this condition. 

If not carefully managed, it can lead to a lack of dietary fiber and certain vitamin and mineral deficiencies.

5. Gluten-free foods are always healthier

Gluten-free does not automatically mean healthy. Some gluten-free processed foods can be high in sugar, fat, and calories. It’s important to read food labels carefully and maintain a balanced diet.

6. Gluten intolerance is a childhood condition

While symptoms of celiac disease often first appear in childhood, the condition can develop at any age. Additionally, non-celiac gluten sensitivity and wheat allergy can develop in adulthood.

7. You can’t be gluten intolerant if you don’t lose weight

Weight loss can occur in severe cases of celiac disease due to malabsorption of nutrients. However, not everyone with gluten intolerance will lose weight. 

Some people may gain weight due to overeating as a response to the malabsorption of nutrients.

Closing thoughts

Gluten intolerance is a multifaceted condition that includes celiac disease and non-celiac gluten sensitivity, requiring complex diagnosis procedures. 

The management of this condition largely involves dietary modifications, which can promote a healthy and fulfilling lifestyle despite the condition. A wide array of myths surrounding gluten intolerance underscores the necessity for accurate and comprehensive knowledge. 

This condition significantly impacts physical and mental health and quality of life. Understanding gluten intolerance is critical for those affected, their immediate circles, and the broader society to provide proper support.

If you believe you may have gluten intolerance, consult a healthcare professional immediately. Don’t risk self-diagnosis or self-treatment, which can lead to unforeseen complications. Let’s spread awareness and debunk myths about gluten intolerance, leading to better health outcomes for all.

FAQs

How do I know if I’m gluten intolerant?

Symptoms of gluten intolerance can range widely, including digestive issues like bloating, diarrhea, or constipation, fatigue, ‘brain fog’, and skin rashes. If you suspect you might be gluten intolerant, consult a healthcare professional who can guide you through the appropriate diagnostic tests and interpret the results.

Does rice have gluten?

No, rice does not contain gluten. It is naturally gluten-free, making it a suitable choice for those following a gluten-free diet due to gluten intolerance or celiac disease.

How do you fix gluten intolerance?

While there is currently no cure for gluten intolerance, it can be effectively managed by adhering to a strict gluten-free diet, which involves avoiding all foods that contain wheat, barley, and rye. Regular check-ups with healthcare professionals are crucial to monitoring and managing potential nutrient deficiencies or complications.

Can I suddenly become gluten intolerant?

Yes, it is possible to develop gluten intolerance at any age, even if you’ve eaten gluten without problems. The reasons for the onset of gluten intolerance later in life are still not completely understood, but they could involve genetic factors, changes in gut microbiota, or other environmental triggers.

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[1] https://acaai.org/allergies/allergic-conditions/food/wheat-gluten/ 
[2] https://my.clevelandclinic.org/health/diseases/21622-gluten-intolerance 
[3] https://acaai.org/allergies/allergic-conditions/food/wheat-gluten/ 
[4] https://pubmed.ncbi.nlm.nih.gov/28244676/ 
[5] https://www.mayoclinic.org/healthy-lifestyle/nutrition-and-healthy-eating/in-depth/gluten-free-diet/art-20048530 
[6] https://www.verywellhealth.com/how-to-identify-gluten-on-food-labels-562666
[7] https://www.webmd.com/diet/features/hidden-sources-of-gluten 
[8] https://www.healthline.com/nutrition/signs-you-are-gluten-intolerant 
[9] https://nyulangone.org/conditions/celiac-disease-gluten-sensitivity/diagnosis
[10] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5566195/ 
[11] https://gluten.org/2021/09/08/gluten-and-your-mental-health/

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