Coping With Celiac Disease

Depression, anxiety, and fatigue are three of the most common symptoms reported by those coping with celiac disease. The emotional component of coping with celiac disease can be perplexing, particularly for those who have not experienced the disease first-hand. Because celiac disease is a long-term autoimmune disorder, there are multiple issues at play; for example, malabsorption—a common symptom of celiac disease—is thought to play a part in depression.

Changing to a gluten-free diet to treat celiac disease is not only a practical concern but also an emotional one. Food is part of just about every major life event, including weddings, funerals, birthdays, graduations, holidays, and everyday celebrations of getting a new job or going on a date night. For those with celiac disease, it encompasses a lot more than just what’s on the menu.

Emotional

There are several factors involved when it comes to emotionally coping with celiac disease. For example, there may be the sadness (emotional response) of knowing that you must give up many of the foods that you have enjoyed for years. Then there is the psychological impact. For example, depression and anxiety are not considered emotions, but certainly have emotional attributes. Most people feel sad when they are depressed and experience fear when they have anxiety. So, when considering how to cope with celiac disease, it’s important to bear in mind a person’s emotional and psychological reactions.

Coping With Frustration

In addition to the sadness surrounding not being able to eat favorite (and familiar) foods, many people with celiac disease go through an initial phase of frustration. Finding your way through the grocery store the first several times when planning a gluten-free diet can be insurmountably aggravating. It’s not uncommon to end up spending several hours at the store, reading labels and making food choices, only to end up leaving with far fewer groceries than you intended to purchase.

The frustration of starting a new diet usually improves with time, but it can help to buddy up with someone who knows the ropes; perhaps consider shopping with a person who is an experienced gluten-free shopper (particularly during the initial shopping trip).

Coping With Psychological Aspects

Emotional symptoms (such as anger, sadness, and more) may be linked to coping with a diagnosis of a major illness that will require a significant lifestyle change. But symptoms could also be a direct result of a psychological condition—such as depression— which can result from common physical symptoms of celiac disease (such as malabsorption and chronic inflammation).

Research has shown that there can be several physiological factors linked with emotional symptoms involved when a person has celiac disease, including:

• Vitamin deficiency from malabsorption, particularly Vitamins D, K, B, B6, B12, iron, calcium, and folate
• Biochemical imbalance in the brain due to the inability to produce enough tryptophan (needed for the production of serotonin, dopamine, and other neurotransmitters)
• Toxins (that build up due to leaky gut syndrome and other physiological symptoms of celiac disease) 
• Long-term impact on organs which may develop primary disease. For example, up to 80% of those with celiac disease who also have depression are diagnosed with thyroid disease

Although eating a gluten-free diet can begin to alleviate many symptoms of celiac disease within a few weeks (or even a few days in some instances), depression, anxiety, and fatigue may linger. In fact, these symptoms may not subside for a year, or even longer. This may be due to a combination of different factors including:

• Difficulty adjusting to changes in the new diet and lifestyle
• Feelings of loss linked to no longer being able to indulge in certain foods or feeling like an outsider when visiting restaurants, engaging in social get-togethers (where food is being served) and more
• Lack of adequate nutrients (it takes time—sometimes up to a year or even longer—for the body to adjust and get back to normal, once the gut begins to heal and nutrients are being absorbed again)
• Having a chronic negative thinking pattern (caused by depression, anxiety, or other factors)

Sometimes people get into a rut. Having celiac-linked depression or anxiety can result in long-term negative thinking. Many people with celiac disease find that getting involved in some type of mindfulness practice, such as mindfulness-based stress reduction (MBSR), can really help break old habits. Be sure to look for an instructor who is certified, and preferably one who has worked with people who have depression and anxiety, and/or with those diagnosed with celiac disease.

Study

In a 2015 review of the literature, study authors discovered that “anxiety, depression, and fatigue are common complaints in patients with untreated celiac disease and contribute to lower quality of life.” Although many of these symptoms subside once treatment starts, these symptoms often impact a person’s adherence to treatment. The study authors concluded that “healthcare professionals should be aware of the ongoing psychological burden of celiac disease in order to support patients with this disease.”

The Celiac Foundation reports that a wide range of emotional and behavioral symptoms of celiac disease can occur, these may include:

• Lack of experiencing pleasure in life
• Socially withdrawing
• Losing interest in hobbies or activities once enjoyed
• Having mood swings
• Experiencing unusually low energy levels
• Feeling aggressive or angry much of the time
• A change in eating (loss or an increase in appetite)
• A change in sleeping patterns (sleeping more or insomnia)
• Feelings of extreme guilt or worthlessness
• Having racing thoughts or feeling agitation
• Hearing voices
• Believing others are planning against you

Keep in mind that many of these feelings are common in people with celiac disease, particularly when the disorder is newly diagnosed or untreated. It’s important to seek help (including professional help, support groups, or more) when needed, but at the same time, avoid any type of self-blame.

Physical

Physical aspects that can help lessen emotional symptoms and enable people to cope more effectively with celiac disease may include:

• Long-term adherence to the gluten-free diet (which often alleviates symptoms)
• Regular exercise (to help improve mood, and boost energy levels) Approximately 5 minutes of exercise each day can start to alleviate stress and anxiety

For some people, exercise, along with other tools, helps depression. Many people combine a regular workout with involvement in support groups, meditation practice, mindfulness practice, medication, and more. 

Consult your primary provider before starting any type of physical exercise routine. 

Diet

A gluten-free diet is the primary treatment modality for celiac disease.

One reason depression may occur in people with celiac disease is due to a lack of proper absorption of vitamins such as vitamin B. Symptoms may continue even after treatment has started to heal the gut (where absorption of nutrients occurs). A simple vitamin supplement may provide adequate nutrients and alleviate symptoms. Common supplements given for celiac disease include:

• Iron
• Calcium
• Zinc
• Vitamin D
• Niacin and folate (B vitamins)
• Magnesium

It's important to consult with your healthcare provider before taking any type of vitamin or supplement, and be sure to select a gluten-free product. Keep in mind that when taking a multivitamin, the dose should never exceed the 100% daily value for vitamins and minerals.

Social

Many people with celiac disease develop social issues either from feeling isolated or adopting a belief that they are different from others (due to having such a strict diet regime, or due to other factors such as depression). Another reason for withdrawing socially may be a direct result of chronic fatigue; many people with celiac disease feel too worn out to engage in social activities.

Part of recovery is learning how to seek support and engage in healthy socialization. In fact, connecting with others is said to improve a person's ability to handle the gluten-free diet. 

There are many support groups for those with celiac disease located across the US. Accessing online support is also a useful tool, particularly for those who are having challenges with low energy and find it difficult to go out. There are online groups that help people with anxiety and depression, online chat support groups for those involved in mindfulness practice, and more.

It may take more than one visit to get a feel for whether a specific support group is well suited for you. It’s a good idea to set a goal, such as attending a specific meeting several times, before deciding if it’s the right one. Often group members can have an off day; giving the group another chance and staying open-minded might result in finding the group that is a perfect fit.

Practical

Coping With Celiac Disease in Children

If you are a parent with a child suspected of having celiac disease, coping may become an entirely different challenge. First, behavioral problems can tip off parents that something is wrong. Common behavioral and emotional symptoms that parents of kids with celiac disease encounter may include:

• Hyperactivity
• Lethargy (low energy, fatigue)
• Poor coordination, clumsiness, imbalance

A 2017 study published by the journal Pediatrics found that mothers who were unaware that their children had celiac disease reported a higher rate of anxiety, depression, aggressive behavior, and sleep problems than mothers of kids who did not have celiac disease. In children, there may be a link between celiac disease and high-functioning autism-spectrum disorder). Children with ASD often have problems with social isolation.

Having a child with celiac disease can present some specific challenges, such as how to get kids to eat a gluten-free diet. Parents of children with celiac disease may consider participating in a celiac disease support group for caregivers.

Reasons for Not Responding to Treatment

There are some common reasons that people may not respond to celiac disease treatment, including:

• Not adhering strictly to the gluten-free diet
• Food intolerances (other than gluten) that have not been diagnosed
• Thyroid problems
• Nutritional deficiencies
• Lengthy recovery period (it may take a year or more for some people to recover)
• Trouble coping with strict dietary guidelines
• Difficulty accepting social implications of dietary changes
• Habitual thinking patterns
• Lifestyle habits that are not easy to change (such as eating at a local pub with no gluten-free options, lack of physical exercise or more)

General Coping Tips

• Consult with a professional dietitian (particularly if you have trouble with diet compliance)
• Exercise daily for at least 30 minutes (with your physician’s approval)
• Learn which products may contain gluten (such as supplements and vitamins as well as cosmetic products) and be diligent in avoiding gluten and gluten cross-contamination.
• Take supplements as ordered by your provider (such as vitamin B and digestive enzymes)
• Be aware that the thyroid gland and other organs may be impacted by celiac disease. Report symptoms of depression to your healthcare provider and ask about getting a thyroid (or other types of tests) to rule out physical causes of depression or other symptoms
• Try to keep your focus on health (what is being gained) rather than the loss of not being able to eat many of the food choices formed by cultural and other experiences

Food is associated with many factors other than just nutrition; making dietary changes can impact many aspects of one’s life. But like most things, it gets easier with time and practice, as long as a positive attitude (which is the one thing that can always be controlled) is maintained.