The Mental Toll of the Gluten-Free Diet

By Amy Burkhart MD, RD

The term “gluten-free” is now commonplace in our daily lives. Because of gluten’s popularity, people believe adhering to a gluten-free diet is easy. Gluten-free food is everywhere. Thus people assume it must be a simple diet to follow. It is not.

One must worry about crumbs, shared cooking surfaces, and the daily potential for serious illness triggered by tiny, accidental, and often untraceable exposures to gluten. For people who must strictly follow the diet, the constant attention to detail can take a significant emotional toll.

Imagine being a child at a birthday party wondering what the Barbie cake tastes like as you nibble the gluten-free cookie meant to equal Barbie’s grandeur. Or picture an adult in the difficult situation of explaining their health condition to extended family, acquaintances, strangers, colleagues, and wait staff (many of whom confuse their medical treatment with a fad diet). They must do this to eat and stay safe everywhere they work, study, travel, and socialize.

Many patients find they even have to explain their diagnosis and treatment to poorly informed medical professionals to receive appropriate care.

• Related post: Doctor’s Don’t Understand Gluten Sensitivity Or Celiac Disease

The psychological effects of situations like these are significant. They occur daily for anyone on a restricted diet and can have long-lasting effects.

• One study found that a patient’s perception of the treatment burden (of the gluten-free diet) is higher for celiac disease than other chronic illnesses. It was comparable to that of end-stage renal disease patients on dialysis.
• Partners are also affected. A study found that the partner burden in celiac disease can strain relationships.
• Celiac disease is permanent. It is not a choice. Failing to follow the diet carries severe health risks.
• Several pharmaceutical companies are developing drug therapies for celiac disease, but none have come to market yet. A strict gluten-free diet is still the only available treatment.

Clearly, adhering to a strict gluten-free diet is taking a psychological toll on people.

Every summer, I volunteer as the camp physician at Camp Celiac in Livermore, CA. This is a camp specifically for children who have celiac disease or adhere to a strict gluten-free diet. Gluten-free diets followed for medical reasons require a level of attention that cannot typically be accommodated at summer camps. Without this careful attention to diet, most children on a strict gluten-free diet would not attend a summer camp.

Every year I marvel at the children’s resilience and what they must face in their lives beyond camp boundaries. The challenges of celiac disease and non-celiac gluten sensitivity do not end with implementing the gluten-free diet, as many people think.  Many children and adults struggle with ongoing symptoms such as fatigue, mood disorders, and headaches. Some children at camp arrive with a line-up of medications worthy of their grandparents. The dietary restrictions can be daunting and take an emotional toll that is rarely given the attention it deserves.

But the challenges for children don’t stop at the camp door. Consider a few of the simple activities that children on a restricted diet may not get to participate in. Or if they do, require a lot of planning to make the situations somewhat similar.

• playdough activities- playdough contains wheat flour
• snack time at preschool- this can be not easy if the school provides snack
• buying lunch at school
• school activities involving food- parties, movie-nights, holidays
• sporting event activities- running to the snack bar-not many options, no pizza at the end of year celebrations
• sleepovers

While these may seem frivolous to some, these activities are an important part of a child’s social development. Being excluded or “different” affects.

A camper’s mother commented on a Facebook post from the first day of camp. She beautifully summed up what many do not realize:

“Some people will look at this picture and see a room full of random children. I see a community of kids who finally feel “normal.” I see the mother who sat next to me on a bunk bed yesterday and cried because she flew from out of state, just so her child could meet someone “just like her.” I told her we all cry.  Every. Single. Time.

In a few days, we’ll all go to pick up our kids in this very room.  Our children will be filled with an overabundance of joy and acceptance that you don’t realize is missing until you see the impact of what being with one another does to their souls.  After their physical ailments recover, it’s the lifelong psychological impact that takes its toll.”

“Dietary restrictions associated with celiac disease create real social barriers for children, creating lifelong psychosocial stressors that youth are often ill-equipped to overcome,” according to clinical psychologist Aaron Rakow, Ph.D. To boost mental health and provide coping strategies for children and teens on a gluten-free diet.

• Six strategies for parents and practitioners recommended by Dr. Rakow.
• Parents and children may also benefit from watching a series of short videos on celiac disease topics for kids, such as eating out, school, and emotional adjustments, provided by the Celiac Disease Program at Boston Children’s Hospital.

The psychological health of people on restricted diets is often an afterthought. It typically takes a back seat to the blood draws and workups during health care visits, if it is addressed.

But, the mind-body connection plays an unmistakable and important role in overall health. Scientific evidence is mounting to convince even skeptics of the association between our physical and emotional well-being. The psychological health of anyone on a restricted diet requires attention and care. Ignoring it may be the roadblock to complete wellness.

Adults and children can try incorporating one or more of the following tools into daily life. It may just be the answer you have been looking for:

Yoga, meditation, and prayer are all forms of mindfulness. A daily practice can actually modify how your brain reacts to situations, including having to follow a restricted diet.

• Positive effects of meditation  Harvard Gazette
• Effects of yoga and meditation on depression and anxiety PubMed
• TED talks on mindfulness TED.com
• Stanford study on meditation easing social anxiety mindful.org

Daily aerobic exercise is as effective as medications for mild depression.
It also helps other factors such as memory, anxiety, sleep, and your skin!

• Exercise as a treatment for depression  PubMed
• General guidelines for using exercise as an antidepressant

Establishing a support network is vital to well-being.

For some people, this may be one close friend; for others, a large group. The important thing is that tackling issues alone is a much more difficult path.

• Some people reap benefits from professional help to cope with the emotional difficulty of having a chronic condition.
• Seek mental health services the way you would seek professional help for any health need; do a bit of research to find an appropriate professional .
• Stigma is out – maximizing your mental health is in.

• Without 7-9 hours of sleep daily, a person is more prone to depression, anxiety, weight gain, memory loss, and more.
• A research review on mind-body approaches to sleep deprivation

Pay attention to the emotional health of anyone who must adhere to a restricted diet. It is often ignored in the medical evaluation but may be the missing piece to their health care puzzle.