The Psychological Toll of the Gluten-Free Diet

Amy Burkhart, MD, RD, is a board-certified emergency medicine physician and registered dietitian. She also trained in integrative medicine with Dr. Andrew Weil at the University of Arizona Center for Integrative Medicine. Her practice is located in Napa, CA.
1100 Lincoln Ave. Suite 200
Napa, CA 94558
(707) 927-5622 Office
www.TheCeliacMD.com

 

The term “gluten-free” is now commonplace in our daily lives. Because of gluten’s newfound 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 sitting 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 in order 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 in order to receive appropriate care.

The psychological burden of treatment

The psychological effects of situations like these are significant. They occur daily for anyone on a restricted diet and can have long-lasting effects. A recent 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, and is comparable to that of end-stage renal disease patients on dialysis. Another study found that the partner burden in celiac disease can also strain relationships. Clearly, adhering to a strict gluten-free diet is taking a psychological toll on people.

Celiac disease is permanent. It is not a choice. Failing to follow the diet carries severe health risks. A number of pharmaceutical companies are trying to develop drug therapies for celiac disease, but none have come to market yet. A strict gluten-free diet is still the only available treatment.

Children face extra challenges

I spend time every summer as the camp physician at Camp Celiac in Livermore, CA, for children who have celiac disease or must 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 be able to attend a summer camp.

Every year I marvel at the resilience of the children 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 implementation of the gluten-free diet, as many people think.  Many children and adults continue to 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.

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 just 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.”

Non-celiac gluten sensitivity

Non-celiac gluten sensitivity in some cases requires the same attention to dietary detail as celiac disease, and the lifestyle struggles can be comparable. The psychological burden is sometimes even higher for gluten sensitivity patients, as they must contend with explaining a health condition that science is just beginning to understand and for which there is no validated diagnostic test. Some people with gluten sensitivity, like those with celiac disease, must take care to avoid cross contamination with shared cutting and cooking surfaces and in food manufacturing.  In many situations, trust and safety is placed in the hands of complete strangers who may not understand, or believe, the need for such attention to detail.

Strategies for children

“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, PhD. To boost mental health and provide coping strategies for children and teens on a gluten-free diet, consider 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.

Strategies for everyone: Mind-body connection

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 at all. 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:

1. Mindfulness

Yoga, meditation and prayer are all forms of mindfulness. A daily practice can actually modify how your brain reacts to situations.

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

2. Exercise

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

Exercise as treatment for depression  PubMed
Guidelines for using exercise as an antidepressant  Psychcentral.com

3. Community

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.

4. Counseling/Therapy

Some people reap benefit 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 in this wide-ranging field (from a few brief chats to psychiatric care) and find someone who is a good fit. Stigma is out – maximizing your mental health is in. It can be enormously beneficial.

5. Adequate Sleep -Priceless!

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

 

The bottom line: 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.