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Advice Chronic Illness Explainers

What I Wish People Understood About Having Celiac Disease

Stop grouping us with the posers. Not everyone who is eating gluten-free is jumping on the latest dieting bandwagon. Here's what you need to know about Celiac disease.

I get it. You’re tired of hearing about the gluten-free fad. I am too.

It seems everyone is going gluten-free these days, from your BFF to celebrities like Miley Cyrus. Some believe a wheat-free diet will put them on the fast track to weight loss. But like any diet trend, followers might stick to it strictly one day, then take a “cheat day” and eat cake the next. For these people, gluten-free is a choice that they can make, a diet rule they can break.

But for sufferers of Celiac disease–a serious autoimmune disorder that can lead to intestinal damage and other severe health problems, such as multiple sclerosis, infertility, and intestinal cancer—going gluten-free isn’t a fad. It’s the only way we have to manage our disease. And a dramatic increase in recent years of people claiming to be “allergic” to gluten when they’re really only gluten-free by choice has caused a backlash that is catching people who have Celiac disease, like me, in the crossfire.

From a certain perspective, it’s understandable that this backlash has occurred. When non-Celiac diners insist their appetizers must be gluten-free—which requires special attention and extra work for the kitchen staff, such as changing gloves and thoroughly cleaning their workstation—but then proceed to order cheesecake with a very gluten-filled crust for dessert, restauranteurs rightly get upset.

But because of this, when a true Celiac sufferer sits down to dine, the staff’s patience for our requirements is already long lost. When everyone cries wolf, after all, it’s easy enough to slip into thinking that wolves simply don’t exist.

I’d love to not worry about having to stick to a GF diet. But it’s not that simple. There is no magic pill for Celiac disease. All we can do is avoid ingesting gluten (the protein found in wheat, rye, barley, and triticale). So in the face of what I see as some widescale misinformation about people with Celiac disease who have no choice but to stick to a Gluten-Free Diet, no matter how others abuse it, I wanted to dispel some of the misconceptions.

I’m not “picky.”

If I could, I’d eat all the pizza. I’d drink the beer. I’d devour the chocolate cake.

Well, perhaps I am particular when it comes to things like wine, art, and words. But I love food. And I cherish the chance to try new things. I don’t avoid gluten-filled foods because I’m “picky.” If I could, I’d eat all the pizza. I’d drink the beer. I’d devour the chocolate cake. I’d go to Italy and bury myself in a giant bowl of handmade pasta. But I can’t. If I ingest even a small bit of gluten, it will trigger an autoimmune response and my body will essentially attack itself, causing severe headaches, inflammation, exhaustion, and damage to my intestinal villi (the tiny projections found on the folds of the small intestine, responsible for absorption of nutrients).

I’m not on a weight-loss diet, and I can’t “cheat.”

If this were a diet by choice, I’d have happily ditched it long ago! It’s not the calories I’m concerned with; it’s the chaos and damage gluten causes my body that keeps me from “just having one bite” of my grandmother’s award-worthy apple pie, my mom’s best banana bread, and that delicious dessert you spent all day baking. Trust me, I want to taste them all. But doing so will cause much more than a calorie gain; the reaction to the gluten protein will inflict actual pain.

I’d prefer not to talk about what happens if I eat gluten.

It’s not you; it’s me. People with Celiac experience a variety of symptoms when they ingest gluten. I do appreciate that you want to understand more about this disease, but I’d prefer to spare us both the gory details, especially if it comes up over dinner.  I don’t want to leave you totally hanging, so think of it like this: Have you ever had really bad food poisoning? How did you feel? What was your body’s reaction? Not the best topic for a dinner conversation! Add to that a headache, fatigue, inflammation, and damage to the small intestine, then multiply all of the above by about five days—that’s what it’s like if I eat gluten.

I would rather go hungry than risk getting sick or inconveniencing you.

Now that you know what happens if I eat gluten, you can understand why I avoid it at all costs. That’s fairly easy to do when I am cooking at home, but restaurants and social events are landmines for Celiac sufferers. Catering staff are often temp hires with limited knowledge of what’s actually in the dishes they’re serving. Chefs may be unavailable for questions during their shift or not even on site during an event. I am always hesitant to ask people to accommodate me. Event planners and brides-to-be already have their plate full, and I don’t want to pile on any more special requests. But when I don’t communicate my food restrictions, I am left with limited or no safe food options. So when I attend big events and weddings, I may go the whole day without eating a meal because the consequences of ingesting gluten are not worth the risk. And this is why…

I pack snacks in my purse like a chipmunk in its cheeks.

Open up any of my bags or purses and you’ll likely find nut and fruit bars, chips, and other non-perishable snacks—or at least remnants of them. Depending on where I am in the world, gluten-free foods aren’t always readily available. And going long periods of time without eating can trigger headaches, even in people that don’t live with an autoimmune disease. For Celiac sufferers, those headaches can be much more severe. Folks with Celiac disease often endure frequent migraine attacks. I experience a rare and debilitating type of migraine attack that mimics a stroke, so I’ve learned to pack snacks, whether I am just traveling to a nearby town or flying to a foreign country. This munchies-hoarding habit has become so obvious (and amusing) to my traveling companions, it even earned me the nickname “squirrel” while on safari in South Africa.

It runs in the family.

Celiac disease is hereditary, and it is particularly prevalent in Ireland, due in part to the history of gluten (or lack of) in Irish diets prior to the famine. I am nearly 50% Irish but didn’t realize I shared so much more than my green eyes, fair skin, and freckles with my ancestors until I visited Ireland a couple of years ago. Nearly every restaurant had a Celiac menu, and no one batted an eye at my requests for gluten-free foods.

I’ve eaten bread.

You can’t judge a gluten-free person by their gluten-filled past.

And pasta and pancakes and crackers—in the days before I knew any better. Celiac diagnoses were unheard of when I was growing up, so I devoured chocolate birthday cakes, peanut butter sandwiches, and a variety of gluten-filled goodies like many other American kids did. I also had a lot of unexplained stomach aches and migraines. You can’t judge a gluten-free person by their gluten-filled past. Many Celiacs suffer for years before identifying this autoimmune disease that’s responsible for their health problems.

Surgery, infections and emotional distress can trigger Celiac disease.

For some people, the symptoms of Celiac disease become “active” after physical or emotional changes or traumas, such as surgery, viral infections, and even pregnancy and childbirth. So it’s possible for a person to not exhibit symptoms early on in their life, but then, after an infection or trauma, experiences extreme physical reactions after ingesting gluten. When I lived in Thailand about 10 years ago, I was hospitalized with a viral infection. While I had hints of Celiac symptoms throughout my life, they showed up in full force after my hospital stay. It was only once I returned to the US a year later—with debilitating Celiac symptoms—that I started seriously searching for a cause.

I’m just as tired of the gluten-free diet trend as you are.

While I can appreciate that the fad has inspired many restaurants to jump on the bandwagon and add gluten-free foods to their menus (thus making it easier for me to find Celiac-friendly options), treating “gluten-free” as a phase or craze rather than a disease is dangerous. Of course, the restaurants aren’t entirely to blame. The framing of gluten-free as a lifestyle choice and diet trend rather than recognizing it as a necessity for gluten intolerant people has incited negative backlash, resulting in a blanket critical approach to anyone who dares declare themselves gluten-free. Some critics have even gone as far as writing articles with clickbait and harmful headlines, that reinforce criticism of gluten intolerance, making it more difficult for people that are actually living with this autoimmune disease to get the help and accommodation we need.

Frustrated by indecisive diet hoppers and the extra time, attention, and money spent on accommodating gluten-free requests that may or may not be legitimate, many restaurant servers and chefs have become indifferent and even angry. Servers often visibly roll their eyes or let out an irritated sigh to indicate their annoyance at my gluten-free inquiries. And some chefs feel it’s not their responsibility to label foods that contain gluten. But it’s not Celiac sufferers or restaurateurs that are the root of the problem.

Fairweather gluten-free fad folks are creating confusion and mistrust and costing restaurants extra work, money, and frustration.

Fairweather gluten-free fad folks are creating confusion and mistrust and costing restaurants extra work, money, and frustration. And in turn, this is causing true Celiac sufferers actual physical damage. Numbed by the unnecessary demands of fickle diners, restaurant staff may consequently dismiss legitimate gluten-free requests and fail to take proper precautions when preparing the food. I have been “glutened” (unknowingly served gluten and then suffered the painful consequences), more times than I can count. Each time my auto-immune response is triggered, more damage is done.

I don’t want to “just stay home.”

The solution some people propose is that I should simply never eat out. The implication that Celiac sufferers are a burden and we should isolate ourselves is disheartening at best. And for some Celiacs, extended isolation can lead to depression.

A more sustainable and healthy solution requires all three groups (Celiac sufferers, fad dieters, and restaurateurs) to work together. Communication, honesty, and a bit of compassion are key:

  • Celiac sufferers need to clearly communicate with servers about the severity of their disease and accept that some restaurants are not always able to accommodate. Not because they don’t want to, but often because it’s impossible or cost prohibitive, particularly for smaller, family-run businesses that lack the time, space, or money to do so. For example, an Italian restaurant where flour is quite literally flying through the air is perhaps not the best place to insist on a fully gluten-free meal. I tend to avoid Italian restaurants (unless they are known to have GF options) for this reason—for my own safety and out of respect for the cuisine, chef, and staff.
  • Dieting diners need to be honest, too. If they have a genuine intolerance or health concern about consuming gluten, they should follow the above suggestions for Celiac sufferers. Otherwise, if they don’t require a strict gluten-free diet, they should not burden restaurants with the same extensive preparation that a completely allergy-free meal requires.
  • Restaurants can aim to have at least a few clearly labeled gluten-free options on the menu, so that no substitutions, extra work, further discussion, time, or expense is required. In this case, gluten-free folks know exactly what is available and they also accept the responsibility that, should they choose to order outside of the GF-labeled options, they do so at their own risk.

I wish you wouldn’t doubt the legitimacy of this disease just because you can’t see it or don’t understand it.

What’s to be gained when people who don’t suffer from a disease try to prove it doesn’t exist? Celiac disease is a very real, very serious autoimmune disorder.

Some people seem hell-bent on proving that gluten intolerance isn’t real. Strangers and even friends have tried to debate the validity of my condition. What’s to be gained when people who don’t suffer from a disease try to prove it doesn’t exist? Celiac disease is a very real, very serious autoimmune disorder. Even that clickbait article above agrees with me on that. I know it can be difficult to understand the inner workings of someone else’s intestines, but you can take my word for it or—if you are genuinely interested, you can take some time to learn more about it.

Immune & Autoimmune Diseases Profiles

The Health Coach Who Refused To Be Wounded

After years of suffering from Hashimoto's Disease, Celiac, and depression, Allie Stark wondered what would happen if she stopped identifying as a sick person. It changed her life.

Allie Stark says “fuck” a lot. She’s honest as all hell, unapologetic, and sugar coats nothing. You’ll thank her later. 

A testament to this? Her clients keep coming back.

Allie runs a booming wellness business. She’s a health and nutrition coach, a wellness consultant, and a yoga instructor. She coaches one-on-one with private clients, specializing in clients with chronic illnesses. She also facilitates large group therapy workshops, and gives workshops and talks in organizations.

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Allie Stark.

Before you start rolling your eyes about Silicon Valley’s commodification of Buddhism and all things woowoo, that’s not Allie’s style, and it’s not what she’s peddling.  

“I’m getting more and more curt with people I work with about I’m-not-gonna-do-the-work-for-you. If you want a cheerleader, I’m not the right person,” she says with genuine impatience in her voice. “I’m being a hard ass because I fucking hate working with clients that expect me to fix their problems. That’s not truth. That doesn’t happen in life.”

In Allie’s view, our societal structure is based on extrinsic factors being cures. She believes that people become unhappy because they can’t ever get what they need from the outside. But she knows from experience that healing is work that one must do on and for oneself. As she pointed out, “most healers are wounded healers, which is why they get into their work.”

Most healers are wounded healers, which is why they get into their work.

Allie was “always kind of a sick kid,” constantly on antibiotics and feeling lousy. She got really sick in her late teens. She developed severe psoriasis but was able to get it under control. Later, at 22, she lost her voice for “a really long time.” She was achy, swollen, fatigued, and had digestive issues. It was a massive autoimmune flare up. She “never felt good, ever.” When she was 24 she was diagnosed with Celiac and stopped eating wheat. She felt better for a few months, then got super sick again. Finally she was diagnosed with Hashimoto’s Disease which causes the immune system to attack the thyroid. She was overmedicated by a factor of 300%, then had to go through a process of being weaned off the drugs, which entailed another year of “feeling really crappy.” It made her “incredibly anal” about her diet. She took a “ridiculous amount of supplements,” and started getting acupuncture.

They weren’t her best years but they did set her on the path that would eventually become her entire mission in life. Being sick made Allie interested in health.

“There’s basically two worlds,” Allie explains. “The sick world and the healthy world. When you live in the healthy world, the sick world is not even a reality, and when you’re living in the sick world, you just want to get into the healthy world.” She started teaching yoga at age 17. After college she was private cheffing for people with food allergies. She went into a masters program at the California Institute of Integral Studies in integrative health.

There’s basically two worlds: the sick world, and the healthy world. When you live in the healthy world, the sick world is not even a reality…

But despite her work, she was still sick and often depressed. “I used to get sick like five times a year between ten and fourteen days every time. It was like a quarter of my years I was sick.”

Until one morning during grad school: “I just remember waking up and wondering why I called myself a sick person.” This was the beginning of her transformation. “Nothing was working,” she explains, “so why not just try to change the story and see what unfolded from there?” She had studied how much mental health plays a role in physical health it finally occurred to her it might be time to shift the narrative for her own life too. She had literally tried everything else.

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Allie Stark.

“When you’ve exhausted everything else you can do, and you’re stripped down to your soul, and you’re wondering how to get through [life] moment-to-moment,” she explains, “the only thing left to do is to go really deep inside of yourself.”

So she called her mom and dad and brother and wrote emails to five close friends. She wrote that she knew she had identified as a sick person in the past. She no longer wanted being sick to be her story. Allie asked that if they ever hear her talking about herself that way, that they call her out. She asked for their help in breaking the pattern. “I wanted to think of myself as a happy, healthy person,” Allie says. It wasn’t just about her physical ailments. She had also identified herself as a person who suffered from depression and decided to reject that narrative too.

I just remember waking up and wondering why I called myself a sick person…

It worked quite remarkably. Looking at Allie now, she is the image of health. She is full of life and energy and has clear, glowing skin and the body of, well, a yoga teacher.  “I wake up like four times a year and feel depressed for two days,” she explains, “but, like, welcome to being a fucking human being. I don’t have long drawn-out weeks, months of depression anymore.” She also hasn’t gotten really sick in over a year, “which is fucking crazy.” Allie was able to markedly improve her health and happiness through the stubborn, searching work of changing her narrative. And that—among many other things—is what she tries to help her clients do.  

Allie finished her graduate studies three years ago and began with some coaching work at the San Francisco Department of Public Health as a program coordinator for a service that offered free chiropractors and acupuncture. She also taught yoga while she slowly started to build a coaching practice. “I’ve always had like seventeen jobs,” she states.  She worked for a period with a partner to create an integrative health program.

She then rebranded and went after the chronic health issue niche market. She partnered with two naturopath doctors who are her main referral system with clients. She started giving onsite talks and workshops. Fast forward through a few years of hustling, and here’s Allie now, still with seventeen jobs running it all as one impressive business out of her impeccably decorated Oakland apartment office.

Why are we all trying to be normal and not optimal?

She recently designed and conducted a one-month program she called Human Flourishing. “Why are we all trying to be normal and not optimal?”  This is what sets Allie’s philosophy apart from a lot of the current Silicon Valley mindfulness and wellness discourse.

“Mediocrity is fine rather than excellence,” she goes on, challenging the currently ubiquitous cult-of-productivity, “not perfectionism, but feeling like an optimal human being, being on you’re a-game which gets confused with being productive.”  Allie sees it as more complicated, more about “how you’re being in the world and does that feel optimal?”

Allie wants to write a book one day. She wants to do more public speaking and large group facilitating and have a small private practice on the side. But she knows that it’s all going to take time. “With some of the most successful people, what falls away the quickest is self care. I refuse to negotiate on that, so my goals may take me longer. I’m ok with that.”

Immune & Autoimmune Diseases Profiles

The Celiac Chef With Grease In Her Bones

Sick of pitiful gluten-free meals, Oakland chef Lizzy Boelter set out to prove that having celiac disease doesn't need to end anyone's love affair with delicious fried foods.

Sick of pitiful gluten-free meals, Oakland chef Lizzy Boelter set out to prove that having celiac disease doesn’t need to end anyone’s love affair with delicious fried foods.

The only building on a block that feels more like a small traffic island, Oakland’s Grease Box restaurant is both unassuming and unexpected. The surrounding neighborhood has seen better days. Tall weeds grow out of cracks in the sidewalk and metal bars line most of the nearby windows. But what’s being made inside this little blue and white joint is nothing short of a minor miracle for those like me and chef-owner Lizzy Boelter, who have celiac disease, an immune response to eating gluten, a protein found in wheat and other grains. Here, gluten-intolerant diners can order juicy grass-fed burgers without having to forgo the bun, crispy fried chicken and waffles, giant strawberry muffins, chocolate chip cookies, cinnamon sugar donuts, fresh baked baguettes with butter, as well as juices made with locally-sourced kale, beets, and ginger (this is California after all).

Grease Box’s interior has the warm, welcoming vibe of a country store. A narrow wooden bench painted robin’s egg blue serves as a seat at one of the five indoor tables. Patrons sink into long, low booths at a few of the others. Large jars of sun tea steep on the windowsill next to a plastic rooster and two owl knickknacks. Wild flowers are collected in ceramic vases. On most days, Boelter can be found hunkered over her bubbling skillet or hidden in the back baking rows of muffins and bread. Often dressed in a tank top, her brown hair piled on top of her head in a poof of curls, Boelter’s casual attire reflects the restaurant’s relaxed atmosphere. A tattoo of a fork and the word “savory” on one arm further underscores the point. “I don’t care about the reclaimed wood, and the succulents, and the Edison bulbs and stuff. The food is it,” says Boelter. “We’re divey, because the food is awesome.”

Grease Box chef Lizzy Boelter (left) and her wife, Hae Yong, bring gluten-free goodness to Oakland.

Increased awareness of food allergies along with gluten- and grain-free diet trends have led to a major increase in gluten-free dining and grocery store options in the last ten years. But, thanks in large part to Boelter’s cast iron skillet and the fried goodness that comes out of it, what Grease Box is doing still feels special. This is the kind of place where you can eat gluten-free without feeling like you’re being limited to a special diet, or a sad ersatz version of what you really want to indulge in.

Born in Texas and raised in southern Louisiana, Boelter has grease in her bones. She watched her mom, who she describes as a “domestic goddess,” master just about every traditional Southern recipe in their home kitchen. “I grew up doing whatever she did,” she says. “Pretty much all we ate were fried things—fried chicken, fried shrimp po’ boys, fried catfish. Everything was fried.” When she was ready to open her own restaurant, she wanted the menu to reflect those roots along with her commitment to sustainable produce and farmers markets. “There were gluten free bakeries and there were local, organic restaurants and never the twain shall meet,” she says. “There weren’t people doing the types of food that I wanted to eat.”

Born in Texas and raised in southern Louisiana, Boelter has grease in her bones.

Grease Box pulls together a number of threads, and one potential knot, in Boelter’s life. In college, she studied art because she wanted to create things for people to enjoy, but she was frustrated by how the dominant conceptual art trends shut out many viewers. After graduation, she spent years working at a wide variety of restaurants and cafes, and realized that food offered a path to do what she had hoped to accomplish with art—make something nourishing and beautiful that everyone could understand. And then, of course, there was her celiac diagnosis.

While tagging along with a musician friend on tour in 2008, Boelter went to a holistic doctor in Portland who suggested that she was allergic to gluten. According to the Mayo Clinic, “if you have celiac disease, eating gluten triggers an immune response in your small intestine … the intestinal damage can cause weight loss, bloating, and sometimes diarrhea. Eventually, your brain, nervous system, bones, liver, and other organs can be deprived of vital nourishment.”

No sad salads for the Celiacs who dine at Oakland’s Grease Box restaurant.

By the time Boelter saw the doctor in Portland, she had already made many hospital visits for various digestive issues, chronic migraines, and joint pain, and she battled depression and anxiety, too. She had experimented with eliminating different foods to try and solve her stomach pain, but nothing had worked. “Then I just stopped eating gluten, and literally every medical problem that I’d ever had went away,” she says.

For someone with such a strong love for fried foods, a diagnosis of celiac disease might seem devastating. Not for Boelter. After so many years of being sick, she was relieved to finally nail the culprit. “I was like, ‘Oh my god, when I eat, it doesn’t hurt afterwards.’ Since I’d had it forever, I thought that was normal. I didn’t realize that that’s not how life felt.”

Boelter’s biggest disappointment came when she tried to eat out. From the ubiquity of breadcrumbs, to the problem of shared grills for pancakes and eggs, to french fries fried in the same oil as onion rings, restaurants became a minefield. “I’m not a super demanding customer. Just give me a salad—I don’t care. Just don’t make me sick,” she says. “But people don’t care, or they think that it’s stupid, or that you’re making it up. … That to me is the devastating part. People won’t accommodate you. They just won’t.” Even when she worked at Pizzaiolo, a beloved high-end pizzeria, only two cooks would make her “pizza no pizza” invention (pizza toppings and cheese baked in a cazuela), and only if she begged them to.

 

“That is the reason that I started Grease Box,” says Boelter. First, she took her campaign to the streets. While still working at Pizzaiolo and its sister pizzeria, Boot & Shoe Service, she began hauling a giant butcher block on a cart with two propane burners to art fairs and food markets. “I just fried stuff in a skillet on the street,” she says. “That was ridiculous. I can’t believe I got away with that.”

The response was overwhelming. Non-gluten-free folks lined up in droves as well, sometimes waiting more than an hour for a plate of perfectly crispy golden brown chicken with meat so tender on the inside that the juice would run down their hands.

After two and half years of managing the food cart business on the side, Boelter took a leap and opened a permanent spot with her now wife Hae Yong. Having mastered fried chicken, she soon faced a bigger challenge: bread. At the cart, Boelter served socca, a chickpea flour flatbread. And she served muffins, scones, and other baked treats from the beginning at Grease Box, but bread was a whole other ball of dough.

For Boelter, fresh baked bread has the power to bend space and time—knocking her back to her childhood.

Unhappy with other gluten-free loaves on the market that use additives like xanthan gum, which replaces the stretchy qualities of gluten (and upsets Boelter’s stomach), she thought she’d never be able make good gluten-free bread. “If it’s gluten- free, you just can’t. I was just like,’ screw it,’” she says.

But she didn’t give up entirely. For Boelter, fresh baked bread has the power to bend space and time—knocking her back to her childhood. As a kid, she woke up to its sweet scent every day. Her mom would tell eager young Lizzy, “You don’t want to cut the bread when it’s hot.” “But my mom would do it anyway,” says Boelter, “and then give me that one piece on the end with butter all over it.” Boelter has been striving to recreate that flavor memory ever since. “It’s just buttered bread, the simplest thing that most people take for granted,” she says. “But it’s like magic and you don’t ever forget that magic.”

It’s just buttered bread… but it’s like magic and you don’t ever forget that magic.

Shortly before the restaurant opened in 2013, Boelter discovered a bread recipe that she thought could work. It wasn’t ready for prime time yet, but she kept experimenting with different alternative ingredients—millet, quinoa, tapioca starch, psyllium husk, and chia seeds—until she eventually came up with a recipe that met her exacting standards. Today, it’s that bread that lures many people, myself included, into Grease Box.

When I stopped in for a fried chicken sandwich one recent afternoon, the crowd was a mix of what you might expect—healthy looking twenty- and thirty-somethings who wear workout apparel whether or not they’re working out and folks dressed in funky mismatched patterns with hair dyed vibrant colors. The to-go crowd, including a guy in an East Bay Tire Company uniform, seemed to represent more of the neighborhood’s blue-collar workers.

Employees from Dope, a “marijuana lifestyle” magazine were eating lunch at the table next to me. Before they left to partake in their “lifestyle” on the patio, a young woman from the group stopped to thank Hae for making delicious food that she could eat. Apparently, the rest of the trio were regular customers—which struck me as a pretty solid endorsement for a joint pushing comfort food.

While Boelter clearly loves making food for everyone to enjoy, she received the ultimate stamp of approval a year and half ago when her family flew out from Texas for her wedding. “They all came here and ate. My mom has never been prouder of me,” says Boelter. “She’s not an easy woman to please, and she was super impressed.”