Girl Gets Served “Gluten Free” Pizza That isn’t Gluten Free.
The weekend retreat was promising. But the first night’s restaurant was horrid. After realizing they’d poisoned me, they grabbed the evidence, ran away and pretended I ceased to exist along with the not so gluten free pizza. It’s not the first time I’ve seen this tactic. Avoidance is a classic. Nobody wants to deal with this sort of train wreck. Least of all… me! It’s hard to blame their reaction when I don’t even want to deal with myself. My husband berated me for not demanding to speak with the manager. I yelped, I told him. Yelping is so much easier than confronting their error, and my weakness.
I’ll go to great lengths to pretend I’m ok, I’m fine, I’ll be alright. See! I’m gonna put on a swimsuit and get in a jacuzzi. I’m gonna go shopping. Whee!
The next 24 hours were awkward and painful for me. I tried to stick around and tough out the pain. A few people avoided me, and my train wreck self, a few tried to nurture and a few got scientific, prodding with questions I really didn’t feel like I could answer, honestly or in depth, at the time. Questions like “So tell me… Do you get the runs?!”
Did they really want to know? The truth is, some of these pains are in my heart, as bad as my guts. I hate being that girl.. that weirdo, that victim. Why can’t I be “normal”?
It’s easier for me to write about it, than it was for me to talk about it. It’s counter intuitive for me to share this but I want to feel less alone. Or maybe this will help someone else feel less alone, or help you understand someone else who suffers similarly. So you asked. Here are the answers to what people asked me and what I wish you knew about what it’s like to be allergic/intolerant… and compromised in this way. What it was like to be me this weekend, and miss out on something I’d so looked forward to.
1. I am not allergic to Gluten in the “OMG She’s going to stop breathing!” way.
Someone else might be though, so don’t get too comfortable with my particular ailment, when you meet other people who are gluten free. Theirs could be worse. I don’t know if I have celiac. It’s hard to accurately diagnose when you’ve been gluten free for as long as I have (12 years). I just know that I get very ill when I eat even a small amount (just a pinch of flour in the sauce is enough to knock me out for a week).
2. Eating gluten free is not a spur of the moment health choice or fad diet for me (and many like me).
It’s a daily necessity. I take it seriously and while I don’t expect others to understand it or read my mind, I do expect them to take care after they’ve been told – as they would with any serious food allergy. It’s not a matter of preferring my dressing on the side. I can’t tell you how many times I’ve had friends confess that they didn’t think the little pinch of flour would affect me so bad – after serving food they claimed was gluten free. They didn’t take it seriously. With friends like these…
3. I’m embarrassed *every single time* I have to explain this issue to people. I cringe about my gluten intolerance making dining out weird or difficult
It’s hard to enjoy going out. Restaurants can be a minefield. Dinner companions can be like hostile interrogators, asking questions and waiting for you to slip up. People don’t like it when you’re different. I don’t like being different. For the record I don’t like having to explain that wheat is in things other than wheat bread, that orzo is pasta, that licorice and soy sauce contain wheat, that modified food starch and textured veggie protein, barbecue and steak sauce, and even some ketchup and mayo contain gluten. It’s exhausting arguing with people and educating them all the time. There’s no win there. I hate that I’m the party pooper who can’t eat a slice of the wedding cake, share the pupu platter or eat the fried calamari. The only thing worse than people being annoyed is people pitying you.
4. I have not had a single “real” donut, slice of real NY pizza, brownie, cookie, pastry, mac and cheese, breaded anything or birthday cake for over ten years but I don’t have extraordinary will power.
Again, this is not a casual dietary choice. It’s a matter of real misery and suffering – a price too high to pay for any of the above foods. I’m not tempted to cheat, ever. The pain is too great.
5. No, I’m not gluten free in an attempt to be low carb or lose weight.
I have grown used to going without the substitute treats as they were not really available before the past few years. So I’m low carb, gluten free and still chubby. Damn. I cannot explain why I am still chubby despite my lack of all of the above treats. Maybe I should workout more!
6. I am not the authority on Gluten Free. I know what works for me. I know what I can tolerate. It’s different for everyone. It’s also different for me, every time I have a reaction.
Some reactions are worse than others - I wish I knew why! I wish I could predict the outcome of an exposure more reliably. It sucks not knowing how bad it will be when I am compromised. The only thing that I can depend on is that I will get sick if I consume gluten.
7. If you ask me how I feel mid reaction, I say “I’ll be Ok!”. That’s me looking for the light at the end of the tunnel-o-pain. What I really mean is “OMFG Shoot me now, please.” Here’s why:
Skip this question if the answer to “How are you?” should always be “Fine!” in your world. If you asked for real, here is the real answer.Try not to feel sorry for me. I’m not looking for pity. I really will be ok. Just give me a few days.
My reactions (and I can only speak for myself) are multi symptomed and take place over the course of several days – up to a week. Sometimes it starts out with an immediate stomach ache, gas and bloating or vomiting. But sometimes I don’t feel sick right away. But always, within a few hours my insides start to swell. This is different than bloating from gas. It’s extremely painful. My abdomen gets hard and sore to the touch. Within a day it also affects my joints, much like a severe attack of arthritis . I literally can’t stand being touched when I get to this point. By the third day I usually get a red butterfly shaped “malar” rash on my face – which looks like a sunburn, along with hives and a raging migraine. This is on top of the joint paint and yes…. some amount of gastric distress in the classic sense, the precise details of which I’ll save for my physician. My best description of how I feel is like I have a horrid hangover, and spent the night in a mosh pit getting kicked around by people in combat boots. Everything hurts. Note: It’s been three days since I ate the pizza and typing this post is difficult as my fingers are cramped and stiff.
8. I have a relatively high pain tolerance. I can function when I am compromised. I might fool you. But not myself. I’m mortified by myself. I hate my own guts.
Gastric distress is embarrassing and even without gas and diarrhea or vomiting, being around others when you have a tummy ache is torture with a side of cold sweats. Hives and the red malar rash on my face make me feel like a pariah. No it’s not a sunburn. Nope it’s not bug bites. Migraines make me extremely cranky and bitchy. All of the above at once? I’ve been known to snap. When I am in the middle of a gluten reaction I hate the person or people responsible for serving me the offending item but ironically I hate myself more. I hate myself as a martyr and I hate myself as a victim and most of all I hate my own miserable guts. Literally. I want to make it all go away and I hate that I can’t.
9. Restaurants that care for their gluten free customers truthfully, knowledgeably and responsibly are few and far between. When I eat in a restaurant that cares, and takes care, I am often reduced to tears of gratitude.
10. It makes me uncomfortable to make others uncomfortable but it also gives me a lot of insight into who my real friends are. They make it clear that I am not crazy, and that I matter. I am beyond grateful for those true friends and family members.
There are people who don’t seem to mind eating at True Food Kitchen with me, or splitting a salad instead of a bread basket. My company means more to them than their penchant for Korean food. They seek out places where we can all eat things we like. They tend to be even harder on the waitstaff at these places than I am, because they are protective of me. When someone screws up, they speak up for me, often before I’ve even spoken up for myself. They know how hard it is for me to explain to someone how sick I get, and how easy it is for others to explain my issues away as an eccentricity, or silly dietary fad.
So there you have it. Ten things I wish I could have explained before leaving Ojai and the fabulous conference I’d so looked forward to attending this weekend. Ten things you should know about allergy sufferers. Or maybe just about me. I’d like to think I’m not alone, though.
Footnote:I found a tiny dead mouse in my car this morning. It must have stowed away in my luggage, seeking out my gluten free snacks. It was a tragic little thing on the floor, on the passenger side. I swear it broke my heart and it felt so familiar at the same time. It made me cry. Some things aren’t entirely explainable. I’m still so bitter that I didn’t get to experience this weekend that my soul needed, that I worked so hard for. I’m pissed off at the casual carelessness of the restaurant. I’m pissed at myself for every instant I tried to act normal (and failed) after it happened. I hate being the victim and I hate myself for leaving that little mouse in my car to die, without knowing or caring. My own casual carelessness. That little mouse was… me? Such a pity. Such a horror. I’m sorry. I feel like a killer and the killed at once. I don’t ever want to be that unspeakable thing.
Seeking peace this week. Please go easy on me world!