I Hate My Guts: 10 Things About Being Gluten Free

This past weekend was a sucker punch. A one two disaster of epic gastric distress proportion. My freak flag flew high. The headline:

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!

 

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14 Responses to I Hate My Guts: 10 Things About Being Gluten Free
  1. Tricia Mumby
    October 1, 2012 | 5:52 am

    Great post! I read every word of this article because I do have so many GFree friends and I never want to ask them questions; but I don’t fully get it! and everyone on earth seems to be having gluten issues.. ugh. That sucks about the restaurant, but I bet it does happen all.the.time. you’re wise to avoid eating out, but that sucks.

  2. Florinda Lantos Pendley Vasque
    October 2, 2012 | 5:05 am

    Ciaran, I’m so sorry you went through this, but so appreciative that you shared so frankly here. We’re in the midst of testing to find out whether my 12-year-old stepson will need to go gluten-free (complications from GERD, which he’s had since infancy), which will mean changes for all of us, and your post has really enlightened me. Feel better soon!

  3. Naomi
    December 23, 2012 | 12:18 am

    Hi there! Thank you for being so honest! I am a college student that has been gluten and dairy-free for the past 2 years (health complications, not by preference) and you have literally taken so many words out of my mouth. What a blessing it is to know that I am not alone in feeling embarrassed when having to explain myself to people who do not comprehend the struggle of giving up foods that many are used to taking for granted. Keep fighting the good fight! We can do this together : )

  4. Debra Hammond
    January 4, 2013 | 1:34 pm

    i stumbled across this post on a day that i was having MAJOR issues with being forced to be gf and df. this rang true with so many of my feelings. thank you for sharing. i am sure that even though i have been living gf and df for the past two months, these feelings may present themselves multiple times in the future. its nice to know that there are days when someone else feels like i do. thanks again!

  5. Ali
    January 8, 2013 | 10:33 am

    Hi there! I am recently GF and I am hating life! I know that seems like such an exaggeration but I am extremely miserable and have had several meltdowns on not being able to enjoy foods I love, having to have foods and cakes be passed acrossed me without being able to indulge, and just being absolutely frustrated at this. I have been so irritable and miserable. Will I always feel this way?

  6. […] Ciaran once wrote a post about life with food allergies that I really appreciated. Not all of us have the same reactions, nor to the same things, but like Ciaran, mine leave my whole body a mess. Head, stomach, joints, skin. Sometimes it sounds like I have a cold. Or feels like the flu. I keep my hair cut in a way to be able to easily hide the areas along my hairline where my skin acts as red hot allergen lie detector when wait staff/kitchen communication has screwed up. […]

  7. Erin
    May 22, 2013 | 6:04 pm

    Honestly, when I take my 3 year old daughter who has Celiac to a resturant it can be scary. Instead for saying she has Celiac I say she has an anaphylactic shock reaction to gluten. I feel people tend to take us more serious and they feel more accountable when preparing or serving food

  8. Serene in Singapore
    May 23, 2013 | 6:14 am

    Well said! I don’t have celiac but have had severe eczema and had needed to be very strict with my diet while on GAPS. I hate it when ignorant people dish out advice and dismisses my concerns. My mil told me that I should eat more if the offending foods to get my body used to them!!!

  9. momfluential
    May 23, 2013 | 7:00 am

    I know exactly what you mean Erin. If they think they will have to see you suffer, or call a paramedic, they manage to take it seriously. Sometimes…

  10. momfluential
    May 23, 2013 | 7:01 am

    That’s an old chestnut, isn’t it? Build up your resistance. The truth is each time you have a reaction, it can get worse!

  11. Karen
    August 20, 2013 | 6:15 am

    Today I Googled: I hate being gluten free and your blog came up top. It outlines how I feel on a daily basis. I’ve only recently been diagnosed as celiac and changing my eating habits at the age of 28 has been extremely difficult.

    My family and friends do not get the severity of the problem and keep telling me that a little should be fine to have. It has been painful and I hate being the way that I am. I hate the fact that I have to choose my food and explain that I can’t have any wheat/gluten/dairy in my diet. I hate the fact that I can’t trust anyone as I’m always so ill after eating out.

    It is easier writing this down. Thank you.

  12. momfluential
    August 20, 2013 | 11:35 am

    I’m so sorry – it gets easier but it’s always hard. I do know how you feel!

  13. Meg
    March 19, 2014 | 6:27 am

    I know this is an old post but it is so accurate it made me bawl my eyes out. About 2 years ago (I’m now 25) I got extremely sick and stayed sick and was in so much pain. The doctors couldn’t figure out what was wrong and I went through all sorts of awful tests and finally another doctor walking by my hospital room who recognized me (fairly small town and I’d been spending a great deal of time at hospital) a and she suggested to try gluten and dairy free vs the zero good, only water diet they had had me on for 3 days at that point. It worked and I started to feel better. Thought I was free and clear, just had to give up my one hobby/talent (bread baking, ironic hey?). Boy was I wrong. I have so much damage to my guts that I have to be very careful of everything I eat. Gluten or not. I don’t eat gluten, I don’t cheat, I don’t take risks, I rarely eat out and when I do it’s always to the same one restaurant and travelling is a nightmare. I’ve been feeling fairly good so decided to have 2 weak alcoholic beverages last night and today I could just drawl in a whole and die. No gluten, my guts are just messed I guess. So here I lay, in bed, with no relief but to wait out the pain,swelling, aching and other not so pretty symptoms. I just happened to type ”I hate my guts’ into google for no reason really and was brought to this post. It is so accurate. I have a major sweet tooth and baking breads wasn’t passion and both make me feel just awful. My whole life was turned upside down and I admit I had and still have a lot of trouble feeling satisfied. I have never had any dietary restrictions, or weight issues, or allergies, or any reason to watch what I ate aside from the desire to be healthy. People just tell me ‘oh atleast you’re not sick anymore’ well ya! Duh! Except I still often times am and following the restrictions and still feeling terrible! People tell me to just eat it in little doses, that that little bit in some salad dressings won’t matter or that deep fried foods can’t be contaminated and it just goes on and on. I hate it. I hate my guts. BUT on a more positive note, I am getting very good at cooking delicious gluten free meals and many of my friends and family members love coming to my place for meals. I like to keep it simple. I stick to naturally gluten free foods for the most part and make my own versions of things vs buying the crap at the grocery store which is awful anyways where I live because there isn’t much variety and what is there is full of other junk. I would be more than happy to share some recipes, be a shoulder to cry on, someone to vent to, a support system for anyone and I think it would be nice to have someone to talk to who actually understands and understands. My email is mrshazen@live.ca. Anyone, please feel free to reach out to me and for me. Maybe we can be penoaks and can always be open and talk freely about our bodies and lifestyles that are not the mainstream.
    Sorry if this is all a rant, I get so emotional when I don’t feel good because it just feels so bad and I have a lot of years left to live with this not super simple carefree life which is how I lived my life previously.
    Anyways, thanks for reading. I leave you with my most sincere and deep wish for health and happiness to all :)

  14. momfluential
    March 19, 2014 | 9:00 am

    Welcome to the hate my guts club. I can’t say I’m glad to have a new member but it’s good to know you are not alone!

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