The emotional burden of following a medically necessary gluten-free diet weighs heavily on a person. In this article, I’ll share five of the emotional burdens faced by people following a gluten-free diet. Please see my disclosures and disclaimers.
Last year, I went on the trip of a lifetime to Israel, a magical place I love dearly. I went with a women’s tour group and had a full itinerary of travels and lectures.
Of course, before I went on the trip, I spoke with my city leader and the leader of the entire trip. Communicating your dietary needs upfront is always a must! They assured me that providing safe, gluten-free meals would be “no problem.”
This turned out to be a lie. It was a problem. A big problem. The chef catering for our tour group was paralyzed with fear when preparing food for me.
On top of that, I could not leave the tour group – it was not safe, nor did I speak the language. Of course, Israel has all sorts of gluten-free food. This is a progressive nation known for its delicious and healthy Mediterranean foods.
So, while my tour group feasted on bread and gourmet meals, I nibbled on bird food (aka, lettuce and carrots). No protein. No rice. No warm meal. No fun.
By Day #3, I was fed up with being unfed. I was sick of advocating for myself and feeling hungry. I unsuccessfully tried to hold back tears, but on Day #3, the tears flowed like Niagara Falls.
We were eating at a restaurant (part of our tour group), and they told me they had prepared a safe meal for me. As I watched my group dine on several courses of beautiful foods, I patiently waited for the “safe” meal I was assured was coming for me.
Finally, my “safe” meal arrived. It was a sad and overcooked chicken breast beside white bean sprouts (see picture below). I started crying. I couldn’t believe no one in this beautiful country could create a nourishing, safe meal for me.
The night was just beginning. Everyone’s belly was full, so they started singing and dancing; I was done. I felt defeated. I left the restaurant in tears. Even as I write this, there is a lump in my throat.
It may seem trivial to most people – perhaps a first-world problem, as some would say – but to me, I felt like a burden, a social pariah, and on top of it all, my emotions were getting the best of me.
I swiftly returned to my hotel room and cried myself to sleep that night – a first for me.
I’m usually tougher than this, but I was tired, hungry, and far from home. Despite my educating, pleading, and advocating, this “no-food-for-Jenny” routine continued for the rest of my trip. I was promised a meal and was sorely disappointed by the sad plate of food placed before me.
This whole episode is not new to me, but after more than seven years of being gluten-free, I thought I was above such emotional outbursts. Apparently not.
Sure, there have been random events in the past where there was no food for me… but I was in America, and I could easily find food on my own.
There were times when I’d been assured a meal of finding a few pieces of lettuce, tomatoes, and cucumbers awaiting me while the rest of the room reveled in lasagna.
But again, near home, I could easily find food. I wasn’t going to starve, and my emotions were never as high as they were thousands of miles away from home, at the whim of a tour group, and uncertain of where I was or how to speak the language to find the food I needed to nourish my body. There are only so many salads, cereal bars, and dried meats you can live on for 10 days!
I shared my humbling story on Instagram only to find that so many of you have experienced similar situations … and learned that everyone’s emotions are high when it happens to them.
That is when I realized there is an emotional burden to having celiac disease. Like any chronic disease, celiac disease takes its toll on a person.
Most people can eat anything and sustain themselves, but for someone with a gluten disorder (or food allergy, for that matter), it’s not so easy.
And when you’re at the whim of other people in a foreign land to feed and nourish you, the burden is compounded, and you want to scream, cry, hide, and go home.
In this article, I discuss the emotional burden of a gluten-free diet. I hope it helps you see that (a) you’re not alone and (b) there is a silver lining to having a gluten disorder.
Emotional Burden #1: Fear
For some people, stories like the one I shared above make people feel paralyzed by their disorder. They refuse to travel or even eat out for fear of being “poisoned” by gluten. They purposely deprive themselves of social and emotional nourishment because of their gluten-free diet. They fear getting sick.
I personally enjoy eating out, trying new foods, and being with friends. I refuse to let my “disability” get in the way of living a full, social life, and I’m willing to fight for what I need to be able to live the life I desire. Am I defeated at times? Absolutely. I’m willing, however, to go down fighting if I have to.
Of course, there are sticky situations to manage when eating, especially when traveling.
I had to alter how I traveled through London, Paris, and Amsterdam last summer. I researched restaurants and spent time seeking out those restaurants during my travels. I couldn’t just grab something on the go; I had to be more intentional about my activities.
I also document what it’s like to go on a cruise while gluten-free, another challenge that set off a slew of emotions but left me stronger in the end.
I genuinely believe no one should put their fear of food and getting sick ahead of their desire to see the world; I also recognize that it’s definitely easier said than done.
Emotional Burden #2: Isolation
A gluten-free diet can also make someone feel isolated or cause them to isolate themselves purposely.
I can only imagine the emotional burden of a gluten-free diet on a child invited to a birthday party. No pizza or cake for them. And they probably feel awkward as they watch all the other kids eat pizza while they nosh on a banana their mom packed for them. I’m an adult, and these emotions are raw for me – I can only imagine how a child would feel.
A few years ago, I was walking with a group of friends. We walked by a bakery, and they all wanted to go in. The bakery’s wonderful scents were wafting in the air, enticing each passerby. My friends purchased bags of pastries while I waited outside and felt sorry for myself.
I could see the excitement in their eyes when they were shopping, and they were excited to share their “finds” with me and one another. I had to tap my dramatic acting skills to pretend to be excited by their purchases. (I should have won an Oscar that day!) I didn’t want to be a Debbie Downer, nor have them feel guilty for indulging in something perfectly normal.
It’s no wonder that long-term adherence to the gluten-free diet rates (especially for those who are gluten-sensitive vs. those who have celiac disease) is so poor. This emotional burden of the gluten-free diet is hard!
In a survey mailed to patients with celiac disease, gastroesophageal reflux disease (GERD), irritable bowel syndrome, inflammatory bowel disease, hypertension (HTN), diabetes mellitus (DM), congestive heart failure, and end-stage renal disease (ESRD) on dialysis, researchers set out to understand the burden of treatment for each disorder. The study included 341 celiac participants and 368 non-celiac participants.
Celiac disease participants reported a high treatment burden, greater than participants with GERD or HTN and comparable to those with ESRD.
However, interestingly enough, celiac disease participants had the most excellent overall health status compared to individuals with other chronic medical conditions surveyed. (Pretty good silver lining, right?)
Researchers concluded that the significant burden of dietary therapy for celiac disease patients makes the case for the desperate need for additional treatment options and interventions that can lower the perceived burden of a gluten-free diet.
Emotional Burden #3: Changed Relationships
The emotional burden of a gluten-free diet doesn’t solely impact the person with the disorder but also can adversely affect relationships.
A study from Columbia University examined the stress related to caring for someone with celiac disease, showing that caregivers experience high stress or level of burden when it comes to caring for someone with celiac disease, particularly a patient with severe symptoms.
This research suggests that celiac disease affects more than just the person with the disorder, and a gluten-free diet can deeply and negatively impact one’s relationships.
I recently watched my friend deal with the emotional burden of raising a child with celiac disease, particularly in the early months. My friend’s daughter (we’ll call her Kate) goes to a private camp every year. Unfortunately, Kate was recently diagnosed with celiac disease about four months before the start of camp.
When my friend called the camp to request accommodations for Kate, the camp told her to take her business elsewhere. They said they were a private camp and simply could not accommodate one child with special gluten-free food when they were trying to feed 500 children simultaneously. Apparently, the camp has the right to do this.
My friend said Kate was devastated. All her friends go to this camp, and the experience has been ripped from her. Talk about an emotional burden you never want your 13-year-old daughter to face, but the emotions are raw, and the struggle is real. This gluten-free diet business, no doubt, ruined her summer and challenged her friendships.
Dating is also another emotional burden that can impact your mental state.
If you’re dating while gluten-free, your special diet usually comes up prior to the first date because you’ll have to explain that you can only eat at certain restaurants. If it doesn’t come up before the date, it undoubtedly comes up on the date as you explain your diet – in front of your date – to a server.
What other disease must you explain to someone on a first date? “I suffer from chronic fungal infections. Now that we got that out of the way, where should we go to eat for our first date?” said no one ever.
On top of it all, a survey published in 2018 found that more than 40 percent of people would be “reluctant” to date someone who avoids gluten because they perceive gluten-free eaters as “high maintenance.”
The emotional burden of the gluten-free diet is compounded if your date loves to eat gluten. He may have downed a beer or two and his burger (with bun). Ah, have fun explaining why he doesn’t get a goodnight kiss.
Emotional Burden #4: Worry About the Future
Another emotional burden for those with gluten disorders is worry about the future. What will become of our health and lives?
People with gluten disorders are at risk for accumulating other serious, life-alternating diseases. The incidence of autoimmune diseases in the general U.S. population is low – only 3.5 percent; however, the incidence of getting another autoimmune disease for someone already diagnosed with celiac disease is 34 percent higher in adults over 20 years old, according to this study.
Furthermore, will there be proper care as we age? What happens when a person with celiac disease is in a nursing home and dependent on others to prepare their food? A Maryland woman is suing her retirement community for failing to provide her with safe gluten-free meals.
I’ve had to learn how to build my mental strength. I never knew how strong I could be until I was tested for celiac disease. I know I have been given this disease for a reason, and it will make me stronger, healthier, and better in the end.
I know I cannot spend time worrying about things that haven’t happened (and may never happen). I can only live in the present.
Today, I do everything in my power to stave off lifestyle diseases, including heart disease, diabetes, and cancer, most of which are in my control if I take care of myself, eat right (eat only gluten-free foods AND continue to make healthy choices … and perhaps lay off the M&Ms) and exercise regularly.
And for those things I cannot control – like the damage already done by eating gluten for 34 years of my life or due to my wonky genes – I won’t worry about it until I have to.
Emotional Burden #5: Sadness
It’s okay to feel sad; this is part of the emotional burden of being on a gluten-free diet. I have spent plenty of time feeling sorry for myself, holding back tears, and crying in a bathroom stall.
A lot of people with gluten disorders suffer from sadness. In fact, a German study found depression rates higher for people following a gluten-free diet than for the general population.
Other researchers found that even among individuals managing their illness “very well”, participants still reported higher rates of stress, depression, and a range of issues, including body dissatisfaction (weight and shape compared to the general population).
Remember, a little sadness is okay. My friend says tears are simply your soul sweating. However, if those symptoms are chronic and paralyzing, you need help and should talk to your doctor ASAP.
Keep in mind that nutrition plays a HUGE role in one’s mental health. Someone with undiagnosed celiac disease or unknown gluten sensitivity may have had trouble absorbing nutrients properly for a long time. They may feel depressed as a result of improper nutrition intake.
Those who continue to eat gluten despite knowing gluten is no good may also suffer from feelings of depression associated with poor management of their disorder.
Take a hard look at your diet. Are you serious about being gluten-free, or are you cheating on your gluten-free diet on occasion? If you’re cheating and feeling sad, it might be that your body has not healed, and you’re still not getting the nutrients you need from your food.
Remember, just because you have gluten sensitivity (vs. celiac) doesn’t give you an excuse to be less serious about your diet.
While it’s well documented that celiac disease impairs nutrient absorption due to persistent damage to the small intestine, those with gluten sensitivity are not in the clear. In fact, their small intestines live in a chronic state of inflammation. When inflamed, no organ or body part can function at full capacity … and it’s no secret that inflammation leads to disease.
A Little Perspective
It may seem all doom and gloom, but let me assure you, it’s not. These emotional burdens are just the realities of dealing with a gluten disorder; managing a chronic condition is not always easy, pleasant, or fair.
Please allow me, however, to offer a little perspective and perhaps put a positive spin on things.
I am personally grateful for celiac disease and the fact that I have the power to control my symptoms and reverse the damage in my body.
I am grateful celiac disease is not a terminal disease, and I’m grateful that I’m not dependent on pills, surgical procedures, or intravenous treatments to manage it.
I manage my disease daily with food – food as thy medicine and medicine as thy food – as the great Hippocrates, the Father of Modern Medicine, once said.
I’m also grateful for the friends and connections I’ve made because of this disease.
One example is how I got to see the beautiful side of my husband. After watching me struggle to be gluten-free, realizing how lonely and isolating it must be, he decided that our entire kitchen would be gluten-free and that he would go gluten-free, too.
He stood in solidarity with me. If it happened to me, it happened to him. What a beautiful way to show me just how much he loves me! And, as a bonus result of going gluten-free, my husband’s thyroid levels are regulated. A win-win!
Additionally, a gluten-free lifestyle has connected me with many new friends and professional connections. It has helped me see my relationships in a new light and be more grateful for my health and time here on Earth, and for that, I feel indebted to celiac disease.
Is it easy? Never.
Is it a daily struggle to overcome the emotional burden of a gluten-free diet? Always.
However, I truly feel blessed that I have celiac disease and can do something about it. I’ve gained a new lease on life.
Oh, and when I’m feeling sorry for myself, the good news is that chocolate is gluten-free. So is ice cream (check labels, of course).