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5 Emotional Burdens That Come With Celiac Disease

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Last year I went on the trip of a lifetime to Israel, a place I visited in the past and always dreamt of going back to. 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. They assured me providing me with 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 food for our tour group was stunned with fear when it came to 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 breads and gourmet meals, I nibbled on bird food (AKA, lettuce and carrots). No protein. No rice. No warm meal. No fun. By day three, I was fed up. I was so sick of advocating for myself and feeling hungry. I had been holding back tears, and even shedding a few embarrassing ones in front of my group, but on day three, 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, unseasoned and overcooked chicken breast over white bean sprouts. I started crying. I couldn’t believe no one in this beautiful country could create a gluten-free and nourishing meal for me.

Everyone started singing and dancing, but 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 might have been a little hangry too (I had not eaten properly for three days, and I was exhausted having to explain myself over and over again). I swiftly walked 15 minutes back to my hotel room. I 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 sorely disappointed by the sad plate of food placed before me. This whole episode is not new to me, but I thought after more than seven years of being gluten-free 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 get myself a meal before or after the event. There were times when I’ve been assured a meal to find a few pieces of lettuce, tomatoes and cucumbers awaiting me while the rest of the room reveled in lasagna. But again, near home, I had the ability to 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 so many of you have experienced similar situations … and I learned 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 illness, celiac disease takes an emotional toll on a person. However, many people don’t have to think twice about everything they eat when they’re managing their illnesses. Most people can eat most things 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 just 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 you’re not alone, and there is a silver lining to having a gluten disorder.

Remember, you have to experience the rain in order to see the rainbow. Let’s discuss.

Emotional burden #1: Fear.

For some people, stories like the one I shared above (about traveling to Israel) makes people feel frozen by their disorder. They refuse to travel or even eat out for fear of being “poisoned” by gluten. I hear about fear all the time in my nutrition coaching practice and from my readers. It is debilitating and can make you scared of food, the very thing that should be nourishing your body. It also can make you scared to eat out and be social, something we need to do to feel “nourished” emotionally.

I personally love eating out, trying new foods and being with friends. I refuse to let my celiac 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 out — especially when you’re traveling. I had to alter the way 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 truly believe no one should put their fear of eating out ahead of their desire to see the world. It’s definitely something easier said than done, though.

Emotional burden #2: Isolation.

Following a gluten-free diet also can make someone feel isolated. I can only imagine the emotional burden of the gluten-free diet for 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 image 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. who have celiac disease) are 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 (IBS), inflammatory bowel disease (IBD), 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 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 in comparison to individuals with the other chronic medical conditions surveyed. (Pretty good silver lining, right?)

Researchers concluded 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 the gluten-free diet.

Emotional burden #3: Changed relationships.

The emotional burden of the gluten-free diet doesn’t just impact the person with the disorder, but also can adversely impact relationships. A study from Columbia University examined the stress related to caring for someone with celiac disease, showing that caregivers experience high stress or burden level when it comes to caring for someone with celiac disease, particularly a patient with severe symptoms. This research suggests celiac disease affects more than just the person with the disorder, and the gluten-free diet can deeply and negatively impact one’s relationships.

I recently watched my cousin deal with the emotional burden of raising a child with celiac disease, particularly in the early months. My cousin’s daughter (we’ll call her Kate) goes to a private camp on the East Coast every year. Unfortunately, Kate was recently diagnosed with celiac disease (about four months before the start of camp).

When my cousin 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’re trying to feed 500 children simultaneously. Apparently, the camp has the right to do this.

My cousin said Kate is 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 have 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 will certainly come up on the date as you explain your diet — in front of your date — to a potentially doubting waiter.

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. They may have downed a beer, or two, along with their burger (with bun). Ah, have fun explaining why they don’t get a goodnight kiss. (Thank goodness there is a dedicated gluten-free dating site.)

Emotional burden #4: Worry about the future.

Another emotional burden for those of us with gluten disorders is worry about the future. What will become of our health and lives? It’s no secret people with gluten disorders are at risk for accumulating a slew of other serious, life-altering diseases.

For example, 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.

As you can see, it’s easy to worry about the future. I do it all the time. Will I be healthy in the long run? Will I die early, struggle longer (i.e., live in a longer state of morbidity) and will I get the care I need as I age? I worry about what will happen when I’m in a nursing home and dependent on others to prepare my food. Will people still see the gluten-free diet as a something not worth taking seriously?

Over the years, I have had build my mental strength. I never knew how strong I could be until I was tested by celiac disease. I know I have been given this disease for a reason, and I know it is going to make me stronger, healthier and better in the end. I realize 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 my wonky genes — I am not going to worry about any of it unless I have to.

Emotional burden #5: Sadness.

It’s OK to feel sad, this is part of the emotional burden of being on a gluten-free diet. Trust me, I have spent plenty of time feeling sorry for myself, holding back tears and crying in a bathroom stall.

Unfortunately, I am not alone. A lot of people with gluten disorders struggle with sadness. A German study found depression rates to be higher for people following a gluten-free diet than 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) when compared to the general population.

Remember, a little sadness is OK. My friend says tears are simply your soul sweating. However, if those symptoms are chronic and debilitating, you may need help and should talk to your doctor ASAP.

Keep in mind nutrition plays a huge role in our 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 struggle with 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 the food you eat.

Remember, just because you’re gluten intolerant (vs. celiac) doesn’t give you an excuse to be less serious about your diet. While it’s well-documented celiac disease impairs nutrient absorption due to persistent damage to the small intestine, those with a 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 is 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.

However, please allow me to offer a little perspective and perhaps put a positive spin on things.

I am personally grateful for celiac disease and the fact 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 I’m not dependent on pills or surgical procedures or intravenous treatments for managing it. I manage my disease every day 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 a beautiful side of my husband. After watching me struggle to be gluten-free, realizing how lonely and isolating it must be, he decided 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 regulated. A win-win indeed!

Additionally, the gluten-free lifestyle has connected with me so many new friends and professional connections. It has helped me see my relationships in a new light, 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 the gluten-free diet? Always. However, I truly feel blessed 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 (pity party for one), the good news is chocolate is gluten-free. So is most ice cream (check labels, of course).

A version of this article was originally published on Good for You Gluten Free.

Unsplash image by Joshua Rawson Harris

Originally published: December 24, 2019
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