Things You Should Never Say To A Person With Autoimmune Disease or Food Allergies

Autoimmune Disease | Chronic Illness | Invisible Illness | Etiquette

Things You Should Never Say to a Person With Autoimmune Disease or Serious Food Allergies

I’m going to skip past the customary introduction to the subject of autoimmune disease etiquette faux pas and allow your imagination to run wild. For the moment, let me just say that people say the dumbest things with the kindest intentions. Yes, they sometimes do.

I was on an airplane flight, and when the attendants began handing out snacks. As is my custom,  I politely returned mine with a, “I can’t have this, but thank you.” The attendant asked me if there was anything I could have from her snack cart, and I said, “I have Celiac Disease and a lot of food allergies, so if you have a gluten free snack, I could look at the ingredients to see if it’s safe for me.” She began to rummage through the options.

An older couple next to me overhead my response*, and the woman said to me, “Oh, I’m gluten free too! You should try their corn chips. They’re gluten free, you know.” I tried to explain to her that I couldn’t have those corn chips, because CORN (and the usual gastrointestinal HELL that is unleashed when I eat corn). Then her husband cut in, suggesting that I try flying to Europe sometime and eating their wheat, “Because this writer said that the wheat in Europe isn’t full of GMO’s and so we are safe to eat the gluten there.”

It took everything in me to not give them an eye-roll. Eye rolling is a sign of resentment, and yes, I have a number of things I feel resentful of in this life. Their momentary presence in my life is not one of them. But when I’m tired, I can feel my eyeballs start to move upwards, as if drawn by an irresistible force, and I have to just stop and breathe, emotionally lassoing my eyes to look straight ahead, soften my gaze, and relax my jaw from clenching.

On a good day, I can just listen and not react. On a stellar day, I can listen, not react, AND if I have the energy and the audience is listening, I can educate on the subject with a nearly unlimited amount of patience and understanding.

But on a day where I’m traveling, where there is nothing to eat, and the guy across the aisle is on his fourth beer and flinging  his gluten-laden snack and sandwich crumbs in at least two meters in all directions, I want to go off on a rant. A RANT, I say!

And so, you get to read my rant about the things you should never say to a person with Autoimmune Disease and multiple serious food allergies.

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Preparing for Illness on the Road

Food Allergies | Illness | Autoimmune Disease | Travel 

Successful travel, whether a road trip or a flight, requires thoughtful planning. Make your next trip a success by creating a prep list of essentials and planning ahead.
Successful travel, whether a road trip or a flight, requires thoughtful planning. Make your next trip a success by creating a prep list of essentials and planning ahead. Pixabay photo.

You and your luggage have arrived at your  budget hotel on the other side of the country. You planned well for your trip from home to your destination, with your allergen-free foods, dehydrated snacks, and plenty of fluids. You remembered to wipe down the tray table on the plane, you said “no” to all the interesting snacks and airline meals that rolled down the aisle. All your seat mates greedily accepted your complimentary deluxe snacks and alcoholic drinks.

Three days later, you are talking a walk with your relatives, who have gathered for the new addition to the family, taking in the unique natural beauty of the area, and chatting up a story storm.  As you lift your camera to frame an extraordinary photo, it happens.

Your tummy starts rumbling. Or,  you notice a rash forming on your cheeks, neck, and chest. A migraine starts to threaten the day. A feeling of panic, combined with resentment and, “Why me?” wells up from down below. The nearest Honey Bucket is a couple of miles away; a bush will have to do. Good thing you packed some wipes and Kleenex; your nose will survive with a few snot rockets and a wipe of your sleeve. The rash is looking red and angry.

But the problem is that you are far away from your car,  medical help,  or an urgent care facility. How well you planned for this trip and your life’s emergencies determines how immediately you can respond. As you retrace the last few days to understand why this event is happening to you, it may do you little good in the moment.

I want to talk to you about illness and managing the effects of your disease and/or food allergies and intolerances on the road, as this part of managing the lifestyle that comes with your desire to not be housebound. There are preparations you can make to help you better manage these emergencies, which can quickly turn an ordinary trip into a health disaster.

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Neutralizer Drops for Tummy Issues

Dropper bottle with label with golden brown liquid sitting on a desk.
4 ounce dropper bottle of Neutralizer for “Tummy Issues” compounded by Hidden Alchemist. Photo by Imei Hsu (Dec 2016)

How many times have you had one of these “tummy days”, when you’re even too tired or embarrassed to admit that you’ve been struggling with diarrhea, cramping, flatulence, and digestive problems?

Anyone who has mild to severe intolerances, a gastro-intestinal disorder (i.e.Crohn’s, IBD), or an Autoimmune Disease that creates a whole host of sensitivities and intolerances knows the painful reality of how many hours and days we lose in a battle against “Tummy issues”.

The reality of living with these symptoms often enough that you can no longer call them occasional should have you thinking that the best remedies aren’t always grabbing a bottle of Imodium. So what is a food-sensitive person to do?

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The Inconvenience of Avoiding Convenience Food

Food Allergies | Autoimmune Disease | Fast Food | Convenience Food | Lifestyles

The inconvenience of avoiding convenience food involves the loss of spontaneity, and planning ahead.
The inconvenience of avoiding convenience food involves the loss of spontaneity, and planning ahead. When you don’t plan ahead, “doing without” has its hazards. Photo courtesy of Pixabay.

From the very beginning, I knew that writing about eating real food – let alone convincing anyone that eating real food is a viable, valuable, and vital activity — would be a hard sell.

All I need to imagine is the tired eyes of a work weary parent, or an over-worked employee at a corporation with flexible hours who never has time to get a proper meal, and I know that my most powerful statement, “Heal yourself with the medicine of real food” would likely be heard as an ideal to aspire to,  not an action to live by.

Why? Because we perceive that statement as a lofty goal, and not an achievable end-destination. We think it’s too inconvenient to live without the conveniences of modern-day eating, which offers taste, ease, and practicality.

And of course, there is a price to pay for that convenience. Just look around. I watch people coming in and out of food comas, over indulging on alcoholic and sugary beverages, and not understanding why they feel like crap all the time. “But I can get away with this,” says one friend, a reference to not feeling sick immediately after eating a favorite dish at a restaurant.

Since it took a long time to get where our nation is with convenience food eating, I don’t imagine it will go away quickly. There is much you would have to overcome. However, if you’re ready to try — or, like me, it’s “ready or not” because of a medical condition that requires you to change your eating habits now — here are a few things to consider.

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Trello For Meal Planning and Prepping

Screen shot of part of my Maui Menu Plan for the March Triathlon camp. I used Trello to help me prepare, including a shopping list for Day 1.
Screen shot of part of my Maui Menu Plan for the March Triathlon camp. I used Trello to help me prepare, including a shopping list for Day 1. Photo by Imei Hsu.

How do you keep track of your food allergies, intolerances, and sensitivities? How do you track your Elimination/Provocation schedule? Do you have a way to systematically think about rotating in a new recipe, and getting the ingredients on your grocery shopping list earlier in the week so that you’re not caught making multiple trips to the store? How do you organize links from websites with interesting information about foods, supplements, and treatments for your gastrointestinal and allergy issues?

First of all, I want to tell you this: IT’S A LOT. To eat well, to eat healthy and clean, and to eat nutrient-dense food free of chemicals, and emulsifiers, processed ingredients and processing cross-contamination, sugars, and unhealthy fats and oils,  you have to do a lot of fancy footwork and planning.

For many of us with Autoimmune Disease and fatigue, we simply don’t have the available energy for those extra trips to the grocery store, let alone standing at the stove and oven, prepping, cooking, and baking. At the worst of my own disease process, just standing at the stove for five minutes left me too tired to eat. Even the joints in my feet ached.

At the time of writing this post, I was planning from a couch, resting from travel and a food “incident” on the return flight of my trip to New Orleans to deliver a presentation on food and mood. I started using Trello.com as a project management system for my eating lifestyle in early 2016, and I love how I can use it plan out my week, month, and repeat previous week’s menus to keep my food varied, interesting, nutritious, and flexible to my changing needs. I can also use it to plan special events, travel food, and holiday meal planning.

Read on to learn about Trello’s features you can hack for your own eating lifestyle.

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Living in the Land of the Gluteneaters

Gluten | Gluten-Free Living | Home | Health | Food Allergies

Stack of Kirkland pizzas in pizza boxes on the corner of a table
When gluten is all around, how do you figure out how to cope when you can’t eat it but must be around it?

In 2014, I entered my first race Olympic Distance race as a relay, the Victoria BC Subaru Saunders Olympic Distance Triathlon. I took on the 0.9mile swim event, M took on the 27 mile bike event, and a fellow runner friend Rosie took on the 10 kilometer run around Elk Lake. When it came to giving our team a name, I ended up submitting the team name, “Imei and the Gluteneaters.”

Three seasons later, and an Ironman Finisher now going on for her first Ultramarathon, I’m reflecting on what it means to live — and I mean fully live — in the Land of the Gluteneaters.

If you must be gluten-free for medically necessary reasons (meaning: you must avoid gluten or you will become seriously ill or risk severe complications or death), avoiding gluten in your food is a complex enough task by itself, since much of our food supply in westernized countries are embedded with gluten and cross-contaminated as well as cross-reactive ingredients. What happens if you live with others who eat gluten? What happens if you live with others who eat the foods you are most reactive to, such as nuts, dairy, gluten, soy? What if you have multiple food allergies, and your partner/spouse does not?

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New Year Celebration Mindshift

New Year’s Eve |  Celebration | Ideas

Wondering how to celebrate New Year's Eve and other special occasions safely? Cultivate a Celebration Mindshift, and you'll be making your own memories without the worry of food-related accidents.
Wondering how to celebrate New Year’s Eve and other special occasions safely? Cultivate a Celebration Mindshift, and you’ll be making your own memories without the worry of food-related accidents.

One of my pet peeves as a Food Allergic Person (FAP) happens almost every time I want to take part in large-scale celebration. Let’s say it’s an upcoming New Year’s Eve event at a beautiful hotel. The organizer is selling tickets to the posh event, and the tickets are available in a number of levels. Here’s an example:

1. Bells and Whistles. Pay $$$$ for tickets, and you get a premium table in the VIP room and seating, access to a full-food buffet, unlimited drink tickets, and arrangements for safe transportation to and from the event.

2. A Bell and A Whistle. Pay $$$ for tickets, you get a table in the main room, access to the full-food buffet, three drink tickets, and you arrange your own safe transportation.

3. No Bells and No Whistles.  Pay $$ for tickets, no table (stand up and eat), access to the full-food buffet, two drink tickets, and you arrange your own safe transportation.

4. There is no option #4 (except being told, “We can’t help you.”).

For the FAP and people on a medically-necessary diet, , packages #1 through #3 are useless to us (and in many cases, dangerous to us). You are paying for food and drink that you should not consume unless you are completely prepared to play roulette with your health and safety.

With cross-contamination, poorly marked foods, and unclear ingredients, you do not know what you are consuming. If you have food sensitivities, you may also encounter them when consuming alcohol, which most of us also know are highly discouraged if you have GI issues, Autoimmune Disease, or have multiple food allergies or intolerances, because alcohol can inflame your GI tract. And you know the saying: hell hath no fury like a GI tract scorned.

Every year since I was diagnosed with Autoimmune Disease and multiple severe food allergies, New Year’s plans and other special occasions  are an important consideration, and one that can be embedded with emotional stories as we try to celebrate with family and friends. This year, make sure you get through the maze not only intact, but with flying colors.

Let’s help you make New Year’s celebrations fun again, shall we? Continue reading