Diagnosed with an Autoimmune Disease or severe Food Allergies?

5 Actions to Take After You Leave Your Doctor’s Office

Diagnosed with an Autoimmune Disease or severe Food Allergies?

5 Actions to Take After You Leave Your Doctor’s Office

Did you know that I like food?

Three tall wine glasses with a pour of red wine in each, yellow glowing candle in front of wine glasses casts a reflective glow off each glass. Photo by Imei.

Wine flight at a local Eastside restaurant on Christmas Eve, 2015. Wine is Imei-safe; apparently, the smoked olives were not, even though we asked a lot of questions.

This post was created in 2015. It has been edited for 2018.

I enjoy food enough that even when I tell myself that I’m just stepping out for a drink, no food, I’ll glance at the fancy-pants menu and carefully read the ingredients of the appetizers, hoping against hope for a tasty morsel. In this respect, my cat and I are the same: whether hungry or not, we’d prefer something to be in the food bowl at all times, especially if that something is BACON!

It’s taken me awhile to get to a place where I like food, since most food has been making me feel sick most of my life, but bit by bit, I’ve created unconventional strategies for eating delicious foods that don’t make me sick. It’s been a long learning curve, but I’ve dedicated this fun blog to helping others learn from my journey, mistakes, and successes so that they too can say that they like food again.

Two arms, palms up, showing from wrist to elbow, with pen marks indicating allergens tested, such as peanut, garlic, onion, and pistachio.

The “before” picture of my arms just moments after being scratched with allergens. Ten minutes later, arms were red as Rudolf’s nose in a snowstorm. Picture in allergist’s office taken with permission.

Recently, I had a RAST food allergy test run on about a dozen foods at my allergy clinic. As suspected, I’ll be following up this scratch test with an ELISA panel on some food groups to see where I land with a few foods that have been causing me digestive problems but don’t show up as food allergies. These are known as intolerances — that Grumpy Tummy feeling ( such as bloating, gas, cramping, nausea, diarrhea) that can last for hours or days. For now, the RAST test confirmed the ones I suspected: nuts (almonds, pistachios, pine nuts), and alliums (onions, garlic). The ELISA test should pick up the rest.

During my time there, I had a chance to talk with the allergist who was writing down my recommended plan of action: 1) Carry an Epi pen (for bee stings, during camping and bike rides and runs), 2) Run ELISA testing on list of foods and get the results back, and 3) Avoid all those foods if they show positive.

There was no plan or education on eating out, which is generally given to all new clients with food allergies. Why? Because after she saw that I have Celiac Disease and so many food allergies and intolerances, she quickly concluded what I knew long ago: there is no way for a restaurant to guarantee their food will not make me sick.

There is nothing like the frustration of trying to make socially-oriented New Year’s Eve plans when you have food allergies and intolerances. Many of the party packages have a built-in food and beverage package built into the ticket price. Buffets are simply too dangerous for me to partake, and plated meals out at a fancy hotel or high-end restaurant are still made in the same kitchen with the allergens I need to avoid. It ends up being a Food Allergy Roulette.

So what is a Sensible Celiac and Food Allergic and Intolerant person supposed to do? Let’s talk about the In’s and Out of Eating In and Eating Out, shall we?

And then, you’ll find out what we’re planning for New Year’s Eve and the weekend to help me socialize AND eat safely. Hopefully it’ll inspire you to do the same for yourself or a food allergic/sensitive/intolerant loved one.

This post is really meant to be part education and part entertainment, so don’t get your panties in a bunch if I take a few literary liberties and enhance my descriptions a few notches! Have fun with this. I tell all my beautiful readers this, but I’ll say it again, I’m all about making food fun again.

Oh, and just so you’ve been warned, this it is the Sensible Celiac Thug Version. As a reminder, I’ll be hosting a kid-friendly section on the real website after the website launch [edit: late January 2018]. Until then, this blog is the fun blog, and food thuggery happens (a lot)!

Let’s start with the In’s and Out’s of Eating Out (*boing boing boing*)!

In’s of Eating Out: 1. Fancy white tablecloths (sometimes), 2. An extensive wine list (or at least one that is longer than what is presently in my home, which is right now, a Malbec from Trader Joe’s, 3. Someone else opening said bottle of wine and pouring it into a glass that stands taller than my cat, slightly hunched over, 4. Pretty food with interesting vegetables and garnishes styled carefully on top of vegetable, 5. (if you have a lot of allergies, this one is what it is) Watching your server get the most exercise s/he has had for the day by running between your table and the kitchen to check with the chef on ingredients of absolutely every part of the meal you are trying to order, 6. Socializing by being in the presence of others (friends, family, even random strangers who are enjoying their food can be pleasant after months of eating by yourself or with only your immediate family or partner/spouse. Or a cat. Who wants to steal your BACON).

Out’s of Eating Out: 1. Fancy white tablecloth gets soiled by your own vomit, or your own drool as you lay your head on it, gasping for breath after being accidentally served one of your allergy foods, 2. Fancy wine you imbibed may end up wasted in the toilet after that food intolerance showed up in a smoked olive you were ensured had nothing but olives, 3. Cat is still slightly hunched over (at home of course), and wine glass is still tall. Nothing changes here! 4. Pretty food doesn’t look as pretty when it appears as a smear in the toilet. Hopefully, you were lucky to get home in time for the smear to be in your toilet, versus having to deal with it in the restaurant’s restroom,  5. You wish your server had done a better job of checking in with the chef on all those, “Let me ask” runs. 6. You now have many witnesses to what happens when you eat something with one of your food allergies or intolerances in it. They can see if your face turns grey, you break out in hives, your lips swell, or how fast you can bolt for the bathroom. You are grateful you know how to run. Everyone takes you seriously, and no one has a single doubt that you represented yourself as a person with serious food allergies and Celiac Disease. Period.

Also, I can attest that if you crap your pants, the diarrhea will end up in your shoe.

The In’s and Outs of Eating In

The In’s of Eating In: 1. Fancy white tablecloth (sometimes), 2. Wine, maybe or maybe not fancy, but that’s your choice, and at half the price, 3. Cat is still hunched over, and you pick the tallness of your wine glasses (I prefer stemless myself, and I don’t swirl to aerate; I use an aerator to aerate!), 4. Pretty food with interesting vegetables and garnishes placed carefully on top of a vegetable, and you are not allergic to any of them because you f*cking put it on there yourself with your very own hands, prepped on a surface that didn’t have a block of cheese or bread on it the moment before by someone racing to assemble your meal and doesn’t quite understand that their action is about to send your guts to that very dark place where you hate life and curse the skies, “Why Why Why?” 5. No one needs to run around and check ingredients. It’s all taken care of, because you shopped for it, you vetted it, and you’ve likely tried it before, with the happy result of the sublime quality of Quiet Tummy, 6. Socially, you provide the love you need. You just loved on you for making food that your body loves. I less than three this. 7. BACON.

The Out’s of Eating In 1. Sometimes, I’m too lazy to clear a place to eat on the table, and I’ll eat in front of the computer, on a sofa, or at a desk. No white tablecloth. No fancy server. I may be wearing my PJ’s. There may be a mewling cat underneath the table, waiting for a head boop and BACON, 2. Same wine for days until it’s finished. It’s just that some of us — ok, I’m talking about myself! — don’t find that truly horrible enough to complain about, because I know that I’m among the few in this predicament that actually can drink a little wine without GI problems (with exception during the high training season), 3. Same hunched over cat. Same wine glass. Day after day after day (still not horrible), 4.You might have to eat the same pretty food and vegetable garnishes for a few days or they will get wilted and your Whole Paycheck expenditure is pissed down the garbage disposal. Hope you like parsnips, carrots, turnips, cauliflower, and Zoodles. A lot. 5. You miss watching someone make the effort to cook you a safe meal, for that strange moment of validation that comes from acknowledgement that your immune system and guts are so sh!t sensitive, someone other than you is busting their balls to make you a plate of food worthy of the temple of your gorgeous body. Instead, you shuffle around in your slippers and PJ’s in the morning, drink your bone broth like a good autoimmune diseased person, and wish that someone would take the guess work out of your best gluten-free xanthum gum free arrowroot and corn-free pizza dough that doesn’t crumble or chip your tooth,  6. You cry in your plate when you think about the dinner and jazz concert you can’t get seating near the front for, because it’s for “dining guests only”; drinkers are seated only in the back.

At that point, having a mewling cat waiting for a head boop isn’t so bad.

New Year’s Eve plans

Female snowboarder wearing helmet, dark blue jacket, water backpack, sits in snow with snowboard on, looking downhill to Whistler Village below

Snowboarding at Whistler Blackcomb. Photo by M.L. 2013. Used with permission.

We searched high and low for ideas on how to celebrate New Year’s Eve, with certain stipulations and standards: no driving late at night in the downtown area post NYE, no expensive food attached to event ticket (since I can’t eat out), no jacked up pricing on a modest hotel, no cigarette, vape, or MJ smoke (so no casino for a concert or a dance party), etc.

Two Cornish game hens, side by side, one a white china plate, with herbs on top and two lemon halves.

Cooking a special meal at home for celebrations is the safest way to ensure your meal won’t have food allergens or intolerances hidden in the ingredients. Photo by Imei.

I think the best we could come up with for this year is that we’d spend NYE alone together and away from food-oriented events by eating a special meal at home, and then heading out for a night hike in the opposite direction from the busy parts of town, go snowboarding/skiing the next day (and I bring my own dehydrated food), and then top it all off with a snowshoeing day with friends on the weekend.

[P.S. Apparently, even actress Jennifer Lawrence feels the same way as I do about New Year’s Eve. Except I don’t usually end up drunk].

I peeked in the refrigerator to see a bottle of Prosecco chilling away, and two soy-free dark chocolate bars in the cabinet. I have my homemade beef jerky (gluten and soy free) for the hikes and snowshoeing, soy and dairy free salted caramels, rice crackers, and bring a cooked sweet potato with maple syrup in a baggie. I may dry some strawberries on the dehydrator as well.

Whatever you plan for New Year’s Eve, I truly hope you create a food-safe celebration and find your balance between alone-time and socializing. Food allergies and autoimmune disease can be an isolating experience, yet I hope you know that there are many of us here who understand much of what you are going through.

I have personally had my bum hovering over a toilet while projectile vomiting into a garbage pail. I understand the pain, shame, despair, recovery, and hope cycle we go through to get control of our health and find food happiness.

After raising your fist to the sky and screaming your head off, I invite you to try again. And again. And again, until you get it just right!  And remember, a simple, safe meal “in” will always trump a fancy, risk-filled evening out.

Oh, and if you’re ever in doubt, skip the sh!tty smoked olives, no matter what they say.

 

Diagnosed with an Autoimmune Disease or severe Food Allergies?

5 Actions to Take After You Leave Your Doctor’s Office

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