How I’m healing my mystery illness with food

DGB
13 min readMar 3, 2021

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Over the past couple years, as I’ve shared my favorite gluten free/dairy free recipes and foods, I’ve received a lot of questions about why I eat the way I do. But even more than that, I’m asked how I do it. I have gotten countless messages saying things like, “Oh my gosh how did you give up gluten and dairy?! I could never!” And honestly, I used to say that exact thing to people who had more restrictive diets. There was a time in my life when people would ask me what my favorite food was and I would literally say “gluten.” But I was forced to make some major changes when my body started to reject all of the foods I loved. And so, I’m going to dive into how I got there and where I am at now.

I was never really a sick kid. I would usually just get a yearly bug and then move on with my life. There were little things, like I have had a sensitive stomach for as long as I can remember and I’ve been lactose intolerant since I was born. But as I got older and moved away from home (where my mom always cooked super healthy), those were just issues I slowly started to ignore. I convinced myself that I had grown out of my lactose intolerance and that I could eat whatever I wanted. Throughout college, I pushed my body to its limit eating pizza, ice cream, cheese curds (yep, I went to University of Wisconsin), and drinking multiple nights a week. Eating this way was what everyone did at my school, so I did it too.

As my time in college went on, I started to get sick way more often than I did growing up. I got strep throat a few times a year and my regular PMS headaches turned into wicked migraines. This transformed my normal-ish health anxiety into full blown OCD and hypochondria, which I’m still working through today. I was always afraid that germs were getting me sick, which is ironic now knowing that I was making myself sick with what I was eating. My health got so bad that at one point I got an MRI because I was so concerned something was really wrong with me.

Despite all of that, after I graduated, I just continued on with this carefree lifestyle. Unsurprisingly, the frequent illnesses only got worse with time. In 2017, I came down with strep throat 10+ times in one year. And when I say strep, I’m not talking about just your average sore throat. I would get high fevers, severe body aches, and my throat would swell almost shut so I couldn’t even swallow water. Long story short, it was debilitating and I was completely bed ridden for a large chunk of 2017 because of how sick I was. Meanwhile, I was still working at my full time job and would push through with Pepto Bismol, Tylenol, and antibiotics. I thought it was normal to carry all those meds around in my purse everywhere I went (spoiler alert, that wasn’t normal).

This lifestyle obviously wasn’t sustainable and I finally hit a breaking point. It was the day before the biggest standup comedy show of my life. After a couple years of doing gigs at small venues, I finally got booked at the Laugh Factory in Hollywood (a major dream of mine). And I came down with strep throat the night before. When I called my family and friends sobbing from my bed, they tried to make me feel better saying it was just bad luck and bad timing. But at this point, I knew it wasn’t. I was getting so sick so frequently, that I realized I needed to take some responsibility for how I was treating my body. At that moment, I scrambled to get antibiotics (which I was taking monthly) to mask my illness and I made it on stage for the show. But in my gut, I knew something had to change. While I was backstage, I vowed to myself that I would not rely on antibiotics anymore as my crutch.

Then came the doctors visits… I spent literally half my salary going to every top doctor in Los Angeles. Gastroenterologists, immunologists, ENTs, rheumatologists, infectious disease doctors, you name it, I’ve probably met with them and am still Facebook friends with the entire office staff. I spent so much time in doctors’ offices that the nurses literally became my friends. But as I saw doctor after doctor and spent thousands of dollars, no one could come up with a diagnosis for what was causing my ongoing recurring bacterial throat infections.

I tested for celiac — negative. I tested for lupus — negative. I tested for Crohn’s disease — negative. But when I was given an antinuclear antibody test (a.k.a. an ANA test which tests for autoimmune disorders), it came back positive. My immunologist then diagnosed me with “mystery autoimmune disease.” While he’s a nice guy and a great doctor, this might’ve been the least helpful diagnosis in the history of time. As messed up as it sounds, at this point I almost wanted a diagnosis so I could start to heal. What was I supposed to do to remedy a “mystery” diagnosis? While I didn’t get much clarity, my doctor also made sure to note that my immunoglobulin levels (a.k.a. my immune system) were completely normal. So through my frustration with my lack of diagnosis, this was the first time I realized that I could no longer blame getting sick on a “bad immune system” like I had for years.

This was a really low point for me. I had given up hope on figuring out what was wrong, because I had exhausted all of my options with doctors and landed up with a mystery diagnosis. In some ways, I just accepted my fate that I was someone who got sick all the time. My anxiety got significantly worse and I stopped making plans with friends, going on trips, booking comedy shows, or doing anything really because I was worried I wouldn’t be well enough to enjoy any of it.

Eventually, I reached out to my cousin Evan, who I knew had struggled with Lyme disease (another chronic illness). Side note, Evan actually turned his negative into a positive and created an entire online community called WANA (We Are Not Alone) for people with chronic conditions. Anyway, Evan urged me to see a functional medicine doctor (FMD), a type of doctor I hadn’t seen or heard of before. I learned quickly that functional medicine focuses on identifying and addressing the root causes of diseases. This was my first experience with an East meets West approach to medicine and health. I am in no way against Western medicine. I am very grateful for it actually. But throughout my experience, I found a lot of issues with the way that typical Western medicine doctors rush to try to figure out the problem by slapping the wrong diagnosis on it. I also had my fair share of doctors throwing meds at me or saying, “Are you sure it’s not just in your head?”

My functional medicine doctor didn’t do that. He actually steered me away from the idea that I had to label myself with a diagnosis for what I was experiencing to be real. For the first time in years, he made me feel heard. We ran a ton of tests including a food sensitivity test. This test didn’t tell me what I was allergic to, but rather it told me what foods triggered an immune response. When I got my results, I finally heard the words I was dreading, “You have to give up gluten and dairy.” There were plenty of other foods I had to eliminate as well, but gluten and dairy were the most heartbreaking for me. At first, I was in denial. I would think to myself, “No way, I’m literally the girl who’s said gluten is my favorite food for years and baking is my favorite hobby. I can’t give it up!” But after a few more months of getting super sick, I gave it a try.

Originally, I was frustrated because I didn’t get instant gratification. Even with my new diet, I still came down with strep, which made me want to give up. My millennial brain would go, “Welp, clearly this isn’t working, back to pizza I guess!” My FMD reminded me that this kind of healing didn’t work like typical Western medicine. It took time. So I stuck with it, and after around six months of my new diet (plus some other tools like acupuncture and herbs) I finally started to go longer periods of time between getting sick.

When I changed my diet, I learned pretty quickly that gluten is a sneaky little bitch and likes to hide in everything. She’s in soy sauce, drinks, soups, cereals, and more. It’s not just in bread and pasta like I originally thought. And the foods that don’t have gluten often times still have dairy, which made this new lifestyle even more challenging. Along with this new way of eating came a new wave of anxiety surrounding food and worrying if what I ate would make me sick. I slowly but surely learned to eat in this new way and figured out what works for me. And what took the longest to learn was how to be gentle with myself and give my body time to heal. Once I was more confident with this new diet and lifestyle, I started to crave the foods I’ve always loved like cookies, pizza, muffins, soft pretzels, and everything in between.

So I started on my journey to find the best gluten free/dairy free foods. I’m still on this journey and I probably will be for the rest of my life. I have to say, it hasn’t always been easy. I’ve had my fair share of inedible gluten free/dairy free options that went from one bite directly into the trash. But for the most part, the whole process has been more fun than I ever thought it would be. I’ve found some incredible, affordable foods that you wouldn’t even know are gluten and dairy free (my boyfriend can attest to this). Because for me, it wasn’t about being on a “diet” it was about feeling healthy again. I can eat these GF/DF foods and enjoy myself without consequences like getting sick and needing to pop Pepto every few minutes.

Cooking at home became easier over the first few months, but restaurants were another story. I am lucky to live in Los Angeles where most places have allergy friendly options, but they aren’t always good/worth the extra charge. There has been a lot of anxiety and trial and error on this front as well, but I have found my go-to spots near me. The biggest thing I’ve learned while eating out is not being afraid to ask questions (while obviously being kind/gracious to the restaurant staff). If I don’t ask questions, I may end up getting sick again and set myself back on all of my hard work. And so, I’ve found my voice and I advocate for myself when I’m not sure if a menu item is cooked with butter or has cream in it. And I get it, I also don’t love being “that girl,” so if I know where I am going in advance, I will call ahead of time to ask any questions about the menu. Most places are extremely understanding about dietary restrictions and calling beforehand eases my anxieties about if I will be able to find something to eat. Similarly, if it’s a holiday or birthday, or if I’m just going to eat at someone else’s house, I always ask what I can bring so I know there is at least one option I can eat.

This may all seem like a lot of work (and it sometimes is), but it’s worth it to me. I’ve learned that health isn’t always how we look on the outside, but how we feel on the inside. There were times when I was at my skinniest and everyone would tell me how “good” I looked, but I was also my sickest. My weak spot was my throat, so that’s where my body attacked. It wasn’t because I was constantly exposed to germs, it was because of the food I was putting in my body. Do I have an official diagnosis? No, I don’t. Am I completely better? No, I’m not. But I do know how to manage my own health better now. I can happily say that I haven’t had gluten or dairy in years. And at the moment, I’ve also gone almost one full year without alcohol. I’ve found that alcohol also really messes with my immune system too. I may go back to having these things in moderation again one day, but for now, I’m actually really happy and healthy without them. All of the foods that I once loved and identified with were actually making me really sick for a very long time. So while it was sad to say goodbye, there’s nothing that tastes as good as trusting my body and feeling safe in it.

I wrote all of this because if you’ve had that “mystery” health thing that you just can’t figure out or get answers on, try looking at what you’re putting into your body. I’m not saying don’t eat gluten or dairy, because I absolutely would if I could. Everybody’s needs are different and there’s no one right way to eat, this is just what works for me. Just take a step back and look at the big picture. I was so focused on my throat and how to fix it, that I didn’t zoom out and look at my body as a whole. I didn’t realize the connection of my stomach aches, migraines, and recurrent strep throat until my FMD clearly explained it.

While this is just my experience (and not medical advice by any means), I wanted to share what I went through in case anyone else has experienced something similar and wants to talk about it or feel less alone. Obviously things could be always worse, but I know it’s a very scary feeling not knowing what’s going on with your body, not knowing why you feel the way you do, and feeling like people don’t believe you. So with all that said, I believe you, I’m here for you, and I have faith that you will figure out what works for you.

Making drastic lifestyle changes is not easy and takes a lot of willpower, so having a supportive community is important. I put together a list of my favorite gluten free/dairy free options I’ve found over the years. This isn’t a list of healthy foods, we all know how to eat fruits and vegetables; rather, this is a list of foods that taste as good as the real thing (just without the gluten or dairy). This list is in no particular order and I will continue to add more places over time as I find them. I tried to include options at a variety of price points because I know GF/DF eating gets expensive very quickly. Please feel free to share your favorites with me and I will try them/add them to the list. All of these places ship too, so even if you don’t live closeby you can try them out. Hope you can find some places you love!

— Dani

Dana’s Bakery — They have the best chocolate chip & Black and White cookies (completely vegan and gluten free) — https://www.danasbakery.com/collections/vegan/products/vegan-cookie-lover-combo-box-no-almond

Erin McKenna’s Bakery — Literally everything there is amazing — https://erin-mckennas-bakery-nyc.myshopify.com/collections

Sweet Loren’s Cookie Dough — great replacement for Nestle Toll House pull apart cookie dough (GF, DF, egg free) — https://sweetlorens.com/shop/chocolate-chunk/

King Arthur Pancake Mix — this is my favorite pancake mix. I use it to make chocolate chip pancakes every weekend (GF, DF, egg free) — https://www.amazon.com/King-Arthur-Gluten-Pancake-Ounce/dp/B00OZENKPO

Enjoy Life Chocolate Chips — these are great chocolate chips for baking or eating and they are free of all allergens — https://enjoylifefoods.com/products/semi-sweet-chocolate-mini-chips-1?variant=20209502879855

Trader Joe’s breads — all of their gluten free breads, bagels, cookie mixes, bread mixes, etc. are FABULOUS — https://www.traderjoes.com/dietary-lists/gluten-free

Applegate Gluten Free Chicken Tenders — I legit go to Whole Foods every Wednesday when they restock these chicken tenders, they are so freaking good 10/10 would recommend — https://applegate.com/products/natural-gluten-free-chicken-tenders

Rising Hearts Bakery — My favorite GF bagels ever! They also have great breads and desserts too — https://www.risingheartsbakerystore.com/

Caulipower Pizza Crust — great frozen pizza crust for making pizza at home (dairy free and gluten free) — https://eatcaulipower.com/en/products/cauliflower-pizza-crust/original/

Banza Pizza Crust — another delicious frozen pizza crust, but if you are sensitive to beans watch out — https://www.eatbanza.com/products/plain-crust

Barilla GF Pasta — This tastes the most like regular pasta. I’ve made it for non-GF people and they don’t notice a difference. I use their GF lasagna noodles too to make lasagna! — https://www.barilla.com/en-us/product-results/pasta/range/gluten-free/

Follow Your Heart Parmesan — I am very particular with my dairy free cheese, I find most of them gross. This is the only DF shredded cheese I’ll eat, I find mine at Pavilions (gluten free, dairy free, nut free) — https://followyourheart.com/products/parmesan/

Kite Hill — This is the only other vegan cheese I’ll eat, I use their vegan ricotta and vegan cream cheese a lot (vegan and gluten free — contains almonds) — https://www.kite-hill.com/our-food/artisanal-delicacy/

Synder’s Pretzel Sticks — These taste like normal pretzels (vegan and gluten free) — https://www.amazon.com/Snyders-Hanover-Gluten-Pretzel-Sticks/dp/B0047IG6OU

B Free Gluten Free Pita — The best GF pita I’ve found (gluten free, dairy free, egg free, nut free) — https://www.amazon.com/BFree-Gluten-Stone-Baked-Bread-Ounce/dp/B07CMB5T45

Coco Bakes — They make amazing sourdough, so worth trying out! (all allergen free) — https://cocobakesla.com/collections/bread

Siete Foods — Tons of great options, especially their chips and tortillas — https://sietefoods.com/collections/tortilla-chips

Ian’s Onion Rings — These are awesome in the air fryer — https://iansfoods.com/products/gluten-free-onion-rings/

Milton’s Crackers — Love these with hummus, comes in multiple flavors I like sea salt and everything — https://www.miltonscraftbakers.com/gluten-free-everything-crackers

Krusteaz Blueberry Muffin Mix — Blueberry muffins are one of my favorite foods and these are perfect — https://www.krusteaz.com/products/gluten-free-mixes/gluten-free-blueberry-muffin-mix

Unreal Dark Chocolate Almond Butter Cups — I am also allergic to peanuts (conveniently on top of all of this) so these are great for me! — https://shop.getunreal.com/Dark-Chocolate-Almond-Butter-Cups/p/UNR-006307&c=UnReal@Cups

Raised Gluten Free Apple Pie — Heat this up and serve with some dairy free ice cream and you’re all set — https://www.raisedglutenfree.com/products-1?pgid=jv2nk9eo-1d1a26f2-5fb3-4d43-b1a6-36e20988fa75

Immaculate Chocolate Chunk Cookie Dough — Great pull apart cookie dough! I add even more chocolate chips — https://www.immaculatebaking.com/product/gluten-free-chocolate-chunk-cookie-dough/

Trader Joe’s Almond Flour Chocolate Chip Cookie Mix — I cook these a little longer than the box says so they are more like cookies than pancakes (lol) but they’re delicious! — https://www.traderjoes.com/digin/post/almond-flour-chocolate-chip-cookie-baking-mix

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