Beyond the Bite is an interview-style series that shares real stories from real people navigating life with alpha-gal syndrome. From diagnosis to daily routines, each story reveals the personal side of this often misunderstood allergy.
When I think about resilience, I picture someone like Dee Nash — although “picture” might not be the right word. To me, she’s in constant motion, sharing tips and tricks from her sprawling Oklahoma garden, where she helps things grow in the kind of climate that can go from zero to tornado in a week.
But Dee doesn’t just grow thriving plants in red dirt. She’s also cultivating a new life after an alpha-gal syndrome diagnosis that could easily send someone else burrowing under a weighted blanket and canceling all future plans.
Instead of retreating, though, Dee pushes forward. She’s swapped steaks for slaw, found strength in routines reshaped by AGS and MCAS, and traded perfume-filled conference halls for online community and connection. Her story is filled with honest moments, unexpected lessons, and more than a few things we can all learn about self-advocacy and adaptation.
It’s a privilege to share Dee’s alpha-gal journey with you today. I hope her story offers the same strength and solidarity that so many of us are searching for, one careful step (and one safe meal) at a time.
The information provided on this site is based on my personal experience living with alpha-gal syndrome. I consistently cite and link to expert sources, but nothing published on this site should be perceived as medical advice.
Alpha-gal sensitivities vary by person. You should understand your dietary restrictions, making any adjustments needed, and directing any questions to your physician.
Meet Dee Nash
Sage: Before we get started, tell us a little about yourself.
Dee: Hello! I am a garden coach, blogger at Red Dirt Ramblings and co-podcaster at the Gardenangelists. I love teaching people how to grow things in our very difficult climate. We’re in the center of the US and have crazy storms.
My symptoms, including anaphylaxis, stem from AGS, a severe allergy to mammal products often called “the red meat allergy,” but it encompasses far more. I have hives, throat and mouth pain, itching, and I am fume reactive. I rarely go out to restaurants because of cooking fumes and cross-contamination, and I’m sensitive to perfumes.
Until recently, when I started Xolair, a biologic asthma medication, I wore a mask to attend church and to shop in the grocery store. My errands were timed to circumvent lunch and dinner, thus avoiding local restaurant cooking fumes.
Despite eliminating all mammal-derived products from my diet, clothes, and toiletries, I still experienced itching, flushing, and fatigue. My allergist diagnosed me with Mast Cell Activation Syndrome (MCAS). I’m on a lot of twice-daily medications, but I hope Xolair will reduce that number, eventually.
Sage: I know I love getting gardening tips along with views of your gorgeous garden on Instagram at @reddirtramblings, and I hope others will join me! Now, let’s talk about alpha-gal syndrome.
Symptoms and Diagnosis
For many people, getting diagnosed with alpha-gal syndrome is a long and frustrating journey, and Dee’s experience was no exception. Here’s how her symptoms started and the winding path that finally led to answers.
Sage: When (or how) did you first realize something was wrong?
Dee: When I felt as old as Methuselah. I had joint pain that wouldn’t quit. I woke up in the middle of the night with itchy hands and feet. I kept gaining weight because of fluid retention. I’d also wake up and have extreme GI symptoms.
Sage: What symptoms made you seek medical attention?
Dee: For two years, before my diagnosis, seven different doctors couldn’t figure out why my joints hurt so badly and I felt like I was dying. Weight loss was recommended, yet a battery of tests yielded no definitive results. None of the doctors knew to check me for AGS. Despite disbelief from doctors and gaslighting, I pushed on.
Sage: How long did it take to get diagnosed?
Dee: I have probably had alpha gal syndrome for several years, but I was diagnosed in October 2023 with a simple blood test by a local nurse practitioner who was determined to discover why I was so sick.
Dee: Did your doctor know what AGS was, or did you have to advocate for yourself?
Dee: My nurse practitioner knew because she had a hunter a few years before who asked to be tested. I then met with an allergist in Tulsa, but although he knew about AGS, he didn’t understand its implications. I eventually found a local allergist who did and later diagnosed me with MCAS.
Sage: How has your life changed since diagnosis?
Dee: Beforehand, I lectured to various gardening and horticulture groups nationwide, but this has become exceptionally difficult. My last keynote speech to the state Master Gardeners resulted in a two-day illness because of their perfumes and food. The most challenging aspect of my tick-borne illness is the isolation and inability to connect with people.
As for food, I changed my entire diet. I now eat chicken and fish, along with vegan proteins like beans. Because of these changes, I lost 85 pounds, which improved my overall health.
Sage: Have you had to teach your family or kids how to support you?
Dee: Yes, because none of us understood AGS or MCAS.
Following an Alpha-gal Diet
At a minimum, being diagnosed with alpha-gal means avoiding all forms of mammalian meat, including beef, pork, and lamb. In Dee’s case, she also suffers from Mast Cell Activation Syndrome (MCAS). This means that her immune system sometimes freaks out over things like spicy food or fresh tomatoes, releasing histamine and other chemicals when those foods don’t typically affect alpha gals.
Sage: What favorite foods did you have to give up after your diagnosis?
Dee: I miss spicy foods and tomatoes. Because of MCAS, those foods give me flushing reactions. Using Xolair, I hope that improves. Do I miss anything else? Well, ice cream, but I love Oatly oat milk ice cream.
Sage: Do you have any new, alpha-gal friendly favorite foods?
Dee: I eat mostly chicken, fish, fruits, and vegetables. I love cooking so the diet isn’t so bad. My favorite simple meals would be grilled, boneless chicken thighs with roasted vegetables, or salmon tacos with homemade slaw. I make a great slaw with coconut vinegar and Duke’s mayonnaise. I also love ostrich because it tastes similar to grass-fed beef.
Sage: If you had a magic wand and could eat one thing safely again, what would it be?
Dee: Fresh tomatoes any day I wanted. Oh, and maybe a steak with a glass of red wine.
Sage: What’s your go-to alpha-gal friendly meal?
My chicken and stars soup is amazing. I use tiny stellini pasta, bone-in chicken thighs, carrots, onions, and celery. Then, right at the end of the cooking process, I add frozen peas. It is heaven.
Sage: That does sound amazing! Do you feel safe eating at restaurants? Why or why not?
Dee: We rarely eat out, but I’m trying more restaurants. We adore our local sushi restaurant; the staff are wonderful to us. Another place I eat is a local vegan restaurant; everything’s homemade there. These places offer me a sense of safety.
Sage: Have you ever accidentally eaten something you shouldn’t?
Dee: Oh yes, one of my worst reactions was to a “vegan meal” from a favorite restaurant. Later, I discovered the Brussels sprouts were fried in lard. I’ll never forget that one.
Sage: How do you explain your allergy to waitstaff or friends?
Dee: I have a card that explains it, but I also go over cooking methods and ingredients with the waitstaff or the manager if needed. I also call ahead of time and ask about preparations. Plus, we eat out on less busy days like the beginning of the week and earlier in the evening before there are many diners.
Sage: Are there any food brands or products you absolutely swear by now?
Dee: I like Siete Foods products. They’ve never failed me. As for milk, I either make cashew milk, or I buy truly extra creamy oat milk. It is the creamiest.
Daily Life Adjustments
Alpha-gal syndrome affects more than just what’s on your plate. From the beauty products you use to the medications you take, it can touch nearly every part of daily life. Dee shares the changes she’s made to stay safe and feel her best.
Sage: How has alpha-gal affected your approach to medication and supplements?
Dee: I run everything by VeganMed [now Pill Clarity] before I fill prescriptions, and I also check if I need to start a new OTC medication or supplement. I read every bottle extensively when starting anew, and periodically, I check to see if ingredients have changed. I need to write VeganMed because my blood pressure pill looks different this month. I need to clarify if it’s still mammal free.
Sage: Have you had to change personal care products, like lotions or makeup?
Dee: Yes, I had to change everything to vegan products because I continued to itch. I also check the labels because vegan lotions and creams sometimes use red algae or carrageenan as a filler. I am extremely allergic. I discovered one of my facial creams had red algae after tracking down why my face was always red and itchy.
Sage: Are there any hidden sources of mammalian ingredients that surprised you?
Dee: Rosemary extract was the biggest surprise. It isn’t necessarily rosemary and can come from mammal diglycerides. That just seems wrong. Organic rosemary extract is usually okay.
Sage: How do you check ingredient labels now—any tips?
Dee: I scan them quickly for the biggest offenders like carrageenan. I stick to foods I’m mostly familiar with. For example, I recently found carrageenan in Cherry Garcia vegan ice cream. I then handed the pint to my husband Bill.
Sage: Have you had to make changes to your job or career?
Dee: Yes, I now rarely speak to large groups, and I do much of my garden coaching online via Zoom.
Hobbies and Pastimes Impacted by AGS
From dinner club to travel, some of Dee’s favorite pastimes look a little different now. But with a few smart changes, she’s still able to enjoy some of her favorite activities.
Sage: What are some hobbies or pastimes you loved before AGS?
Dee: Gardening, working puzzles, reading, book club, dinner club, etc. We also traveled overseas several times.
Sage: Have you had to adjust how you enjoy them?
Dee: The dinner club, yes. I no longer go. We haven’t traveled overseas since my diagnosis, which makes me sad quite frankly.
Sage: Have you picked up any new hobbies or interests since your diagnosis?
Dee: Not really. I garden more intensively now.
Sage: What do you do to prevent additional tick bites when spending time outside?
Dee: I wear permethrin-bonded clothing from Insect Shield. I also sent in some of my own clothes to be bonded. I also wear garden gloves that fit tightly at the wrists because I was bitten last summer right next to my watch. I spray any exposed skin with Picaridin which is more effective than DEET. I reapply the spray quite often too.
Sage: You said you haven’t traveled internationally since your diagnosis, but what about domestically? What’s that like?
Dee: We’re getting ready to take a trip to Big Cedar in Branson, MO. It will be stressful to plan, but I’m going to bring an ice chest with my favorite oat milk, breakfast bars, favorite soda, and portioned safe oatmeal. I’ll also bring cut up fruit or berries for breakfast and safe, sliced turkey for sandwiches and my favorite vegan oat bread.
I’ve heard eating in Branson is easier because there are so many people with AGS in southern Missouri. We shall see. We also have some group dinners at my husband’s conference, so I’ll meet with the Big Cedar catering staff to go over what I can eat. My fume reactions are lessening so that helps.
Sage: That sounds fun! What do you always pack when you’re away from home?
Dee: Besides the food above, I pack my own pillow and quilt because I can’t stand the commercial laundry soap used by many hotels. I don’t bring my own sheets, but I often sleep on top of the bed under my quilt.
I may bring my coffeemaker this time because I like it so much, and I have the room. Seems excessive, but at the very least, I would bring my coffee filters. Many of us can’t use bleached coffee filters.
I’ll call ahead of time and ask the hotel to remove plugins and not spray scent in the room.
Working with Healthcare Providers
Sage: Do you feel like your healthcare providers take AGS seriously?
Dee: I fire the ones who don’t. I recently fired my GYN because he wouldn’t listen to my concerns about surgery and medications.
Sage: Have you been able to find specialists or support in your area?
Dee: I have a wonderful allergist. I find her staff challenging though. You have to be a tireless advocate for yourself.
Sage: I think advocating for yourself is a common theme shared by all alpha gals! What advice would you give to someone who just got diagnosed?
Dee: We’ve all been there, and we want to help. It gets better. Learn everything you can about AGS.
First, remove all mammal meats out of your diet except low-fat dairy. You may be able to eat dairy, and if so, that’s good. Watch out for tricky ingredients in prepared foods too. Eat mostly whole foods and avoid prepared foods in the beginning to help your body settle down.
Use VeganMed [now Pill Clarity] to vet your medications if you take any and are reactive to mammal ingredients. You will need to know the NDC number for them to help you. I didn’t even know what that was in the beginning. Your pharmacist can help you. Change to a local pharmacist who cares. The big pharmacies are too busy.
Read blogs like Sage Alpha Gal that will help you navigate things, and learn to cook alpha-gal friendly recipes.
The Two Alpha Gals Mentorship Program made my transition easier. It’s definitely worth it!
Finding Community and Raising Awareness
Alpha-gal syndrome can feel isolating, but community and support make a big difference. Dee talks about the power of connection and what she wants skeptics to understand.
The Emotional Impact Aspect of Alpha-gal Syndrome
Living with alpha-gal can bring more than physical symptoms. The social limitations, skepticism from others, and daily vigilance can take a mental and emotional toll. Dee shares how she’s processed the ups and downs and what helps her stay centered.
Sage: What has been the hardest part of living with AGS?
Dee: The loneliness and isolation. It’s also been difficult to get the treatment I need. I had to research my medication with veganmed.org for mammal ingredients because I continued to have reactions. Having medications compounded is very expensive, and if I were working outside the home, I would probably need to go on leave because of fume reactions.
Sage: What has helped you stay positive?
Dee: I’m determined to get better, and I found wonderful friends online.
Sage: Do you ever feel isolated or misunderstood?
Dee: I feel isolated sometimes, but not misunderstood. I’m a communicator so I communicate well. I share much of this information on my Instagram profile and grid along with my blog.
Sage: What gives you hope?
Dee: There are many new medications on the horizon, and researchers are working tirelessly to help. Information has gotten better too. More people know about this disease.
Sage: Do you feel supported by your friends and family?
Dee: My immediate family is fantastic. It took some adjustment, but our home is now mammal-free except for milk for my husband’s cereal. He rinses out his bowl and glass after using them so I don’t touch milk. I’m not fume reactive to it unless it’s heated.
Sage: Have you met others with AGS?
Dee: Yes, so many! Oklahoma is a hotbed of AGS right now. They reach out to me because I’ve written about it on my garden blog.
Sage: Are you part of any online or local AGS communities?
Dee: I love the Alpha-gal Meal Planning Hub on Facebook which has great ideas. I’m also a member of the Alpha-gal Information: Evidence-Based Support group because it’s science based.
Sage: Yes! Two of my favorite online resources, as well! What would you say to someone who doubts AGS is real?
Dee: Honestly, I think I would just walk away. I think the biggest problem is that many people think fume (airborne) reactions aren’t real. They can’t see it, so they think we are faking it. The best explanation is that we’re reacting to tiny fat molecules in the air. That seems to get their attention.
Looking Ahead
Life with alpha-gal can come with plenty of unknowns, but it also offers perspective, strength, and a renewed sense of awareness. From required reporting to being profoundly grateful for the experiences that bring her joy, Dee shares what she hopes the future holds.
Sage: What do you hope more people will understand about alpha-gal?
Dee: There is no single treatment or cure for tick-borne diseases and that the reactions are consistently inconsistent as Dr. Scott Commins has said.
Sage: How do you stay safe and sane when the world isn’t AGS-friendly?
Dee: It may sound trite, but I’ve learned to appreciate the simple things like:
- Good coffee
- My cat Masha (a mammal I can live with because I feed her chicken and fish)
- My relationship with my husband and four children and one precious granddaughter
- Good friends I’ve met through AGS who understand
- Doing my garden podcast every week
There are so many more good things than bad ones.
Sage: If someone just got diagnosed today, what would you want them to know?
Dee: That if you don’t get more tick bites, you will probably get better. You will learn to live with the food allergy and maybe even thrive because of it.
Sage: What would you like to see change in the next few years for people with AGS?
Dee: I would like required reporting of cases in all 50 states including Oklahoma. Currently, only a few states require labs and/or doctors to report test results.
Also, I’d like to see H.R. 1178 The Alpha-gal Allergen Inclusion Act, passed to amend the Federal Food, Drug, and Cosmetic Act to add alpha-gal to the definition of “major food allergen.” Companies would then be required to list mammal ingredients on food and medical packaging. Our rapidly expanding population would benefit from this. Oklahoma’s AGS sufferers likely number between 70,000 and 100,000, though the lack of reporting makes a precise figure impossible to determine.
Sage: What’s one thing you’ve learned about yourself through this journey?
Dee: That I’m far more resilient than I realized. I learned to be a good advocate for my mother after her car wreck and subsequent surgeries, and now that on-the-job education about the medical system has enabled me to care for myself.
Sage: Dee, thank you for sharing your story. From your gorgeous garden to your practical advice for managing alpha-gal and MCAS, you’re showing others what it looks like to adapt and thrive — even when the world isn’t exactly allergy-friendly. Your resilience has deep roots, and I know your experience and advice will help others feel a little less alone and a lot more empowered as they navigate their own path forward.
