What are the foods you dream of when you think of home, comfort, or celebration?
In my mind’s eye, I see …
. . . My mom’s perfect apple and cream pies, her homemade beef and noodles, and fresh-from-the-oven rolls slathered with butter.
. . . Pizza from the next town over that tastes like no other pizza I’ve consumed in my life (yes, my hometown friends, I’m talking about Pizza Sam’s!).
. . . Nachos from the gas station, at a bar, made in my kitchen (I don’t discriminate).
. . . Mac and cheese cooked up from a recipe straight outta the Betty Crocker cookbook.
. . . All the ice cream and smelly cheeses I’ve relished in the Caribbean.
. . . Creamy dishes and desserts at my favorite tapas and Italian restaurants.
. . . Scalloped potatoes loaded with cheddar cheese.
Food, exclusion, and grief
Grievously, I now only have memories of these foods because I can no longer eat them without making myself ill. I have celiac disease and intolerances to dairy, peanuts, and a few other odds and ends.
Celiac disease and other food restrictions due to a medical condition are no joke. Giving up foods you love will deliver to you true grief. It’s not easy, and it takes a long time to come out the other side. I was diagnosed with celiac disease more than a decade ago. Adding insult to injury, about 18 months ago testing showed I have intolerances to the aforementioned foods. While I have emotionally come to the other side with celiac disease, I’m still trying to make my way to acceptance with the other foods I can no longer have.
I’ll think I have the grief thing licked, then I’ll be thrown into a situation I could have never predicted. I’ve found myself in a state of rage at the grocery store and abandoned my cart so I can make a mad dash for the privacy of my car. Or I’ll break down weeping at the dinner table. I have smiled through gritted teeth at restaurants as my meal is delivered last because the kitchen screwed up and had to remake my order and everyone else at the table is almost done eating.
Worse even, is when there’s so little on the menu I can eat and so I eat something I don’t really even like. Then I’m resentful I have to pay the bill with its gluten-free upcharges and am still hungry because my meal is usually smaller or not worth the calories so I’ve abandoned it. I have even experienced a falling out with longtime friends over where to go for a girls’ trip because I was too filled with anxiety about how I would feed myself over seven days in another country where there’s a language barrier and lack of education. There’s so much loss in this.
Metaphorically speaking, I have put whipped cream on trash and tried to pass it off as dessert by reminding myself there are so many things I can still eat. Or, I tell myself I can manage my disease with dietary restrictions rather than medications. And a line I often say is that sometimes celiac disease saves me from myself – it keeps me from devouring every muffin I come across at a continental breakfast or all the pastries and breads on the buffet. But I’m here to finally admit, those sentiments are all crap. They skate over the facts of exclusion and grief.
Getting diagnosed
I was diagnosed with celiac disease more than a decade ago, when I was in my late thirties. If you’re unsure of what celiac disease is, here’s the short version:
Celiac disease is a serious, genetic autoimmune disorder triggered by consuming a protein called gluten, which is found in wheat, barley, and rye. When a person with celiac eats gluten, the protein interferes with the absorption of nutrients from food by damaging a part of the small intestine called villi. Damaged villi make it nearly impossible for the body to absorb nutrients into the bloodstream, leading to malnourishment and a host of other problems including some cancers, thyroid disease, osteoporosis, infertility, and the onset of other autoimmune diseases. (source: www.beyondceliac.org)
There are more than 300 known symptoms of celiac disease. Some common signs of celiac include anemia, anxiety, bloating, brain fog, constipation or diarrhea, joint pain, headaches, rash, depression, and more. Some of us develop symptoms early in life, others of us are adults. The array of symptoms makes celiac hard to diagnose, which means 83 percent of people with celiac are undiagnosed or misdiagnosed with other conditions. (source: www.beyondceliac.org)
Here’s how I was tipped off something was awry with my body (TMI alert!). I herniated a disk in my spine and went for X-rays. My doctor threw my film up on the lightboard and told me that she could understand my back pain, but LOOK AT THIS! She used her pen as a pointer and had me make note of how incredibly constipated I was (as if I didn't know - but I had just always lived with this unfortunate issue). She prescribed Miralax® and sent me on my way.
As I was recovering from my herniation, I resumed my yoga practice and began attending gentle classes. Someone at the yoga studio commented on my coloring. She told me I looked yellow. Noted. Also, my joints ached, and my return to yoga wasn’t helping.
Next up, I observed how much it bothered me to have something press into my skin or to brush my arm against a door frame or sit down with a little too much force. And my belly was constantly bloated in spite of the industrial laxative I was taking. If you pressed a finger into my stomach, it was so hard it would feel as if you were pressing into muscle. My guts were miserable, and often still are.
Because I also have Hashimoto’s disease - an autoimmune disease where the immune system turns against the body’s own tissues and the immune system attacks the thyroid leading to hypothyroidism - I made an appointment with an endocrinologist. I can’t remember why I took this route. Maybe I researched hypothyroidism symptoms and wanted to ensure my thyroid medication was still on point. Whatever the case, I saw a new endo and after I described my symptoms, she decided to run labs for celiac.
Blood work came back positive and I was sent for an endoscopy so a biopsy of my intestinal tract could be had and tested, which is the gold standard of testing for celiac disease. Over the next several weeks my discolored, bloated self continued to eat all the gluten I wanted since gluten needs to be present for an accurate diagnosis.
On the day of my endoscopy, I gave up gluten, even though I wouldn’t have test results for a couple of days. I watched as the gluten came out of my pores. It flared some good teenage-esque acne and my joints swelled. My right hand looked as if I had punched someone. I began my life of reading food labels, quizzing wait staff, asking to talk to the chef, online researching, new cookbook purchasing, and learning about cross-contamination. In those first weeks, there were days I subsisted on peanut butter and rice cakes followed by Hot Tamales® (the candy) for dessert.
The biopsy returned a positive result. I widened my consumption of safe foods. I slowly began to feel better, but never 100 percent.
Yet, with all but my family and my now-husband, I downplayed my disease. I wanted to be the least amount of trouble possible. I didn’t want to draw attention to myself if I could help it. At restaurants, I said, “I can’t do gluten.” Or, I might say, “I have celiac.” I never put the word “disease” after celiac. I looked up menus online before dining out so I could know what to order beforehand and ask as few questions as possible when I was about to have my order taken.
My road to hell is paved with gluten AND dairy
In my early forties, my weight spiked for no apparent reason. I was eating and exercising the same. I went back to the doctor and she ran more tests to ascertain if I had any food allergies, sensitivities, or intolerances. I can’t remember the exact results, but I remember giving up dairy for a while and a couple of other things. My weight continued to climb so I increased my exercise and decreased my food intake. I did a detox diet. I drank gallons of water. Nothing helped. I did more food testing and the results showed yet another group of foods I needed to give up.
Instead, I gave up.
My doctor told me to rotate foods through my diet. Eat them for three months, drop them, and bring something else in. I was overwhelmed and frustrated. I decided moderation was key and ate all the foods, excepting anything that contained gluten. My weight leveled off, but dropping any of it was a monumental task.
Next, my body began another protest. I’ve been plagued with sinus issues since middle school, but now I had congestion that would not let up. I was popping decongestants like Tic Tacs®. My face sometimes appeared swollen and my head and teeth ached. I tried acupuncture and Chinese medicine; applied my thumbs to all the pressure points; iced my face or used a heating pad; had a head CT to rule out masses and other nastiness; completed a round a of Nambudipad Allergy Eliminate Techniques; used a Neti-pot; had skin prick testing done for environmental allergies; consulted with a naturopath; and took prescriptions, supplements, and homeopathic remedies. Nothing helped. So, I just lived with the discomfort – after all, it wasn’t life-threatening.
Unfortunately, a couple of years ago, the congestion heightened, making exercise and sleep difficult. Though I felt my muscles and stamina could manage long hikes, yoga, and strength training, my sinuses could not. I was breathless much of the time. Feeling as though I couldn’t catch my breath led to a lot of anxiety, sometimes even panic. It was the worst in summer, my favorite season.
I had a feeling the congestion had to do with something in my diet. Because of my research on celiac, I knew that often celiacs don’t tolerate dairy well because the protein (casein) in dairy is similar to gluten. I wasn’t thrilled to go back for more food testing, but not being able to breathe through my nose was distressing. So, off I went to the lab to have some more blood taken.
The tricky thing about food allergy testing is that it isn’t always accurate (read about food allergy testing inaccuracies here). My testing came back with scores indicating severe intolerances for dairy and peanuts and a few other lesser sensitivities (learn about differences among food allergies, intolerances, and sensitivities here). I asked my doctor if she thought I’d ever be able to consume dairy and peanuts again – the answer was, of course, no. But the idea of testing inaccuracies plays in the back of my mind. My doctor was a tad too dismissive of my concerns and had one foot out the door when I still was asking questions.
However, I’m generally a compliant patient so I gave up dairy and peanuts. And let me tell you, in my experience, tossing dairy out of your diet is way harder than giving up gluten. Forget eating out. Forget partaking in potlucks or eating from buffets (always a crapshoot for celiacs, anyway). I know some don’t mind vegan substitutes for cheese, but I think they are extraordinarily gross. Who wants cheese made from nuts, soy, oils, and other things that don’t belong in cheese, anyway?
But, here’s my truth about all of this: It’s not actually restricting foods that is the hardest. What is even harder than not consuming my favorite foods is the sense of exclusion, of feeling as if I am so much trouble I shouldn’t even attend events where there is food, of being completely overwhelmed by anxiety when I eat food prepared in a kitchen other than my own because I will not know if I will become ill.
I don’t tell you all of this to have you feel sorry for me. That’s the last thing I want. What I’m going for here is to try to inform and to educate, to help others make sense of what’s going on for me and for others who suffer from a restricted diet due to a medical condition. I will live, literally and figuratively, from not eating glutenous bread, cheese, and ice cream. But, the disagreement with my friends made me realize that I have to get a better handle on how my diagnoses are affecting me and to be more open about the emotional costs of said diagnoses.
My grief is deep and I’m not through it.
But maybe helping others understand what goes on for those with celiac and food restriction or saying "me too" will lend to people understanding that this is serious and complicated – and in many cases, life and death. I love my friends and family, and I used to love breaking bread with them. I know we’ll find new ways to share gorgeous meals around a table full of love and laughter, but getting there will take me some more time. I hope the people I spend the most time with can continue to hang in there with me while I figure it all out.
What I want my people to know
While I can’t speak for everyone who has dietary restrictions due to a medical condition, I suspect my points below aren’t only personal, but very general. Here’s what I’d like my people to know when it comes to my experiences and emotions around food – maybe you’d like your people to know these things, too.
Eating out
Consider that eating out is mostly no longer fun or celebratory. It’s just plain work. If I’m not excited to go out for a meal it’s because the emotional labor of dining out often isn’t worth it. If I ask you to come to my home for a meal or to go on a picnic, it’s because this is usually easier and less emotionally taxing for me than attempting to order a meal that’s safe and satiating.
If you don’t hear me speaking up for myself in a restaurant or asking a lot of questions of my server, it’s because I am weighing the emotional and mental cost of doing so. Please don’t feel you need to manage this for me. This will continue to be a long journey for me and one that only I can be responsible for. In the end, I may be okay with just ordering a beverage, but you should feel free to eat the way you choose. Sometimes it takes me a minute to adjust to what’s happening around me, but it isn’t personal to you or anything you’re doing.
Should I seem tense when we are in a restaurant it’s likely because there’s little on the menu I can consume and I know there will be an upcharge for gluten-free items or other substitutions, and I will end up paying for a meal I may not really want. Often, I’m still hungry (more accurately hangry) and resentful after paying that bill.
Also, please understand that I don’t want to be the one who always plans where or what we eat. This can take away the fun of eating out, and it feels self-centered, even though I know that I have to advocate for my health. I already suspect you’re tired of the handful of restaurants where I know I can safely eat. I’d give anything for it to be different and I appreciate you following my lead so I can be safe. If you do the research on safe places to eat, I am forever grateful to you, but it's not necessary for you to handle my work.
Convenience no longer exists when it comes to having multiple food groups you have to avoid. Most fast-food restaurants are not an option. When gluten was my only restricted food, it was easier to be out in the world. Many restaurants have a variety of choices and kitchen staff is prepared to have a celiac dine with them – meaning when you inform the staff you have celiac or other medical condition, they know what you can and cannot eat AND they have an area in the kitchen where your meal will be prepared so that your food is not cross-contaminated. Having more than one food restriction complicates things even more because often kitchen staff can't see the big picture - they will serve you a gluten-free meal, but it may have another ingredient in it that will make you sick.
Conversations about food
It’s difficult to hear someone say, “I could never give up (fill in the blank),” and look at me with something akin to pity and wonder because I actually can’t and don’t eat whatever that food is - and never will again. It’s also hard to hear, “I know you can’t eat this…” then go on to describe the heavenly food that I will never be able to safely taste. This one really leads to feelings of exclusion.
Should I choose to talk with you about celiac disease or my food intolerances, all you need to do is listen and ask questions if there’s something I’m not being clear about. While I’m sure your intention is one of kindness and of wanting to connect, please try not to say something like this: “I know how you feel. I can’t eat X because it makes me feel terrible.” This negates my feelings of grief, loss, and other emotions around my medical conditions. Worse yet, it can feel dismissive, making me feel unseen and unheard. If you do indeed have dietary restrictions, please feel safe sharing that with me, but put your experience on pause for just a moment. I would actually love to hear about your struggles, hold space for your emotions, and offer any insight and support I can (I will ask first if you are open to this rather than just giving it), but please hold off on your experiences until a time when I’m not being vulnerable with you.
Gluten-free is not a choice for celiacs
Understand that celiac disease is just that - a disease. I know a gluten-free diet is now trendy. But for some of us, consuming gluten is a very real risk and one that this celiac doesn’t take lightly (remember, cancer). Trust me when I say that if I could order gluten, I certainly would. And while I’m not a super sensitive celiac, I will avoid cross-contamination, which isn’t something people do if they are being gluten-free because they want to lose weight. I am definitely not trying to be a diva, nor am I seeking attention or trying to be high maintenance, when I’m ordering.
Not the same experience
If you have a loved one with celiac disease or who can’t eat certain foods because of a medical condition, and you give up that food in solidarity and support, that is a profound sacrifice that I assure you will not go unnoticed or unappreciated. However, it’s not the same experience. Once you drop that child off at school, you can still grab the Reese’s Peanut Butter Cup at the gas station and scarf it down in your car. Or you can go out to lunch with your friends and dine on the bread in the basket that’s placed on your table. You can still safely consume those foods. While you are making a sacrifice and that’s so honorable and loving, you still cannot fully relate on the same level as the person with the medical condition.
Please don't be offended
If you’ve purchased or made something for me to eat and I don’t eat it, know that this hurts me. I beg of you, please do not be offended. I am a storm of emotions when this happens and none of them are good. I don’t want to hurt your feelings. I don’t want to draw attention to myself. I positively hate that you’ve spent time, energy, and money (especially on those expensive specialty items) on me and I have to walk away from your gifted food. And know that I am grateful you’ve gone out of your way for me. I can’t even begin to express what it means to me that you’re looking out for my comfort and that you want to include me.
I also intensely dislike asking friends and family to list off ingredients of the food they’ve gone out of their way to prepare for me and then not eating those foods because they inadvertently did put something in the dish I cannot eat. I don't want to ask about cross-contamination, but I will so I can stay well. Please bear with me.
No cure
There is no pill or medication I can take to offset the effects gluten, dairy, and peanuts have on my body. There is no cure for celiac disease.
Travel
Travel became extra complicated when I was diagnosed with celiac and dairy intolerance. Deciphering labels in languages I don’t understand and communicating with wait staff when there’s a language barrier means I take a risk with every forkful of food. Most of the time it’s been fine, but a couple of times not. For me, this creates a lot of anxiety when I sit down to eat. The last thing I want is to miss a second of my vacation because I’m stuck in the bathroom purging whatever contaminate has made its way into my body. Also, when traveling, sometimes you’re stuck eating the same foods over and over so you can stay safe. It’s boring and maddening.
Many thanks
For my mom, who always, always, always ensures I have a home cooked meal that’s as close as possible to what everyone else is eating is so kind and such a relief. She goes out of her way for every meal, from the salad, to the bread, the entrée, to dessert – I never go without. She’s had to read and to learn a lot to make this happen. I’m always grateful when I take a seat at her table.
Thank you to my husband who will go to extreme lengths to feed me. Phone calls, research, speaking to wait staff, waving away the bread basket at restaurants, skipping desserts, driving great distances, speaking up for me when necessary … I know how much he loves me. His actions around food show me this.
For my friends who have gone on this journey with me, thank you for researching, purchasing, cooking, and going out of your way for me. I am so attuned to the fact that you make sacrifices when it comes to your preferences and I am so thankful.