On Getting Gluten’d

Why you gotta' play my mama like that?

Why you gotta’ play my mama like that?

Oh, hai. You guys, I have to say I’ve been feeling a big neglectful lately. When I was all up in the Whole 30 I was posting every damn thing I was cooking up. When I’m being normal, I’m all “Ohmygoddidyouseethis???” But I’ve had a rough week. A week that I’m pretty sure started with me getting gluten’d, and then I thought maybe some gluten-free fettucine alfredo followed by ice cream would be no problem, but guess what BIG ‘EFFING PROBLEM. Because apparently dairy is lining up to bite me in the ass. And then, I was so totally 100% pure eating that I can’t figure out why I’m still sick. Oh, right, it’s because you don’t get slipped gluten then go back to a normal life after you’ve pooped it out. Which is why I’m writing this post. Because, you know what? I don’t really think people get it when you say you have celiac and you can’t have gluten. I think people don’t get that this is a disease, and it has serious consequences, and those of us with this stupid sprue are actually sick. Like, have a disease. Which is why it’s called celiac disease.

I had a good friend tell me once that someone’s amazing dessert was “worth the tummy ache.” Sure it was worth a tummy ache. Going on an insane loop-de-loop is way worth the tummy ache. What it was not worth was an initial burning pain that is followed by a race to the bathroom, followed by getting up every few hours as if you had a newborn, and cleaning up poop, but this time it’s YOU pooping and wow, does it burn. Followed by eating every single gluten-free, whole foods, healthy, meal for a week and a half yet having that meal go down the pot approximately 45 minutes after you eat it. Oh, and the pain. THE PAIN. Did I mention the increased risk for cancer? No? I didn’t talk about CANCER?

Then comes the headache and the dehydration because, you know, YOU HAVEN’T HAD FOOD OR DRINK FOR 3-5 DAYS, and wow, your body does not feel good. Funny, how that happens.  If you’re lucky enough to get joint pain then you can plan on trying to appear normal, while actually being in serious need of a walking stick. And you don’t even live on the prairie, nor wear patchouli oil. Oh, hey, do you have a weird rash? I hope you’re not getting your picture taken, or going on a new J-Date! Because that shizzle looks like the herpes.  Oh, and if you’re a lady and you go out in public during this time, just be prepared for the inevitable question, “When are you due?”

So yeah, I got gluten’d pretty bad this week. And perhaps it’s partially my fault for making jokes about my condition all the time that people don’t really take it seriously. And perhaps instead of going to work, and taking care of my two adorable yet insane children, I should have dropped everything and stayed in bed. But life doesn’t really work that way, does it? Plus, who will feed the children?

I never want to address someone who is honestly trying to sort out this gluten thing in a negative manner. Even more important? Someone trying to figure out what to serve up to someone in their life who can’t eat gluten. I want us to all get along. And there is no reason why we should not. Yet. As someone who always tries to play it cool with the food stuffs, who acts like it’s no big deal going gluten-free, can I just stop for one minute and scream out, “MY INTESTINES ARE RIPPING THEMSELVES APART!!!!” Because, basically, that’s what celiac disease is all about. Oh, and the cancer.

It’s super easy to say, “Take care of yourself!” But when you actually have to work for a living in America, it’s never that simple. I do not mean to imply that someone like me, a creative professional, has it worse than someone who has a much more regimented work schedule. What I do mean to imply/say directly/shove down your gluten-free throat, is that celiac disease is really fucking serious. Getting sick from gluten, can debilitate you whether you’re intolerant, celiac, or have some weird-o allergy. I work for a website where I get to read, write and edit all day. I’m lucky! Except when when my brain is collapsing in on itself and I need to sleep but you know, I’ve already used my vacation days because we live in America and shit, and I’ve got to get this story live ASAP! Work is work is work.

So while it’s kind of cute and funny to talk about gluten-free, shit is real. And it hurts your body. And it fucking sucks.

How was your week?

44 thoughts on “On Getting Gluten’d

  1. That really sucks. I know of the joint pain, bloating, rashes, and digestive/bathroom issues way too well. Happens to me also whenever I am glutened. I hate that and hope you feel better soon!

  2. All what you said, but I start it off with 3-5 hours of projectile vomiting. That starts usually about an hour or two after the gluten is ingested, so yep, I’ve vomited uncontrollably at work after some asshole poisoned me at lunch.

      • Jen – I also have the vomiting when glutened! IT SUCKS. And April – holy yes, the sharing of bathrooms with coworkers while all this is going on. When I was still being diagnosed, one of the girls at my office was pregnant, and going through that really bad morning sickness (like Kate Middleton had, whatever the heck that was called.) We were throw up buddies. (At least I had someone to share my pain??? Unlike the people at Target, who were just probably disgusted that I was puking amongst them, because I couldn’t make it to my job 12 minutes away.)

      • I just got gluttened of low salt tamari sauce – i had 30 seconds before my bowels emptied – it was so fast and furious and then i got to the bathroom and vomitted like crazy and crying – i will now have pain for 24 hours. I know how you feel. Arthritis in my spine and osteoporosis in my hips all because i did not know i was a celiac

      • Oh wow, I didn’t think tamari had gluten. That sucks! And yes, you’re the perfect example of all the things that celiac disease can cause that proves it’s not “just a tummyache.” I’m so sorry!

      • I do not really know how to work this site for replying so hoping it goes in the right place – it was low salt tamari that gluttened me – low salt tamari is done on roasted barly flour as part of the processing – they claim that at the end of production there is no gluten – i beg to disagree. A friend looked into it last night and apparently alot of people get gluttened of it. I am 49 and just discovering i am a celiac. I spent years sick and in pain – teeth snapping off when i eat something – infertile – always sick – then gluten took out my thyroid – my sacral joints are fused and osteo and arthritis – gluten is cruel. I am terrified to eat anything in public now because i do not have any time to get to a toilet if i am gluttened. It would litterally spray out of me from both ends before i could get away from the table. How embarrassing. I would then be on the floor in agony and someone would have to carry me out of the shopping centre. No thanks. Take my own food wherever i go.

  3. So sorry girlie. This shit is no joke. One year gf and still getting sick and losing weight. I’m 5’7″ and 97 lbs. had three great months actually felt “normal” again then had 4 day attack for reasons I can’t figure out and a good 10 days to come out of it. I don’t know how ppl still work with this disease. I got the ax for calling in sick all the time. Now have a sinus infection and ask dr for gf antibiotic..she didn’t know of one..ask pharmacist. 4 pharmacist didn’t know and handed me a list of gf meds from 2009. I said this is unacceptable. Told me to call drug companies. Called them and they said to call manufacturer. Called them and they say they change their inactive ingredients too often to make a gf statement. How the hell are we supposed to navigate this effn disease when nobody knows what the eff they are doing??? I can’t take much more of this!!! Headed to mayo clinic tomorrow and will hopefully figure out what the eff is wrong with me. I feel UR pain sister! Hopefully you have good ppl in UR life to love you thru this bs!

    • Jesus! You need to have a dietician/advocate/something. Your journey sounds like a nightmare. And this is why we need real labeling laws, not just suggestions. I’m so sorry!

    • Oregano oil is a powerful natural antibiotic it takes a little longer to work but it does work. Its best to do double doses just before sleeping because you heal most when you are asleep, you can also grow your own oregano plant and just eat it Straight of the plant if you’re worried about getting glutened from the oil

  4. Oh, it really really does suck. I’m sorry you got G’d. I feel like I spend so much of my time downplaying the whole GF thing (esp when talking to other parents about my daughter’s celiac) and it’s all, oh isn’t is so great how much GF food is available, and, how hard can making GF pizza really be (um, hard, cause how often do you actually make your own G pizza), etc. And I’m all smiling and nodding my head, saying, “yes, it’s great! we’re so lucky” blah blah blah and then BAM my kid gets a stomach ache after eating supposedly GF pizza and it all goes to crap (literally). So I hear you. Totally.

  5. Eek, April… so sorry to hear about your week. I feel and share your pain… I’m the same way, except add near-psychotic neurological problems on top. It’s been hard for me too, this week… I’m going through a new hormone protocol for my breast cancer and it leaves me with symptoms that feel a lot like my gluten hangovers (bloating, a deranged sense of my surroundings, bodyaches). Here’s asking G-d for healing on your behalf…

  6. I was seriously hurting a few weeks ago from the worst glutening I’ve had in a long time from a restaurant with gluten free items on their menu. These places ALWAYS seem to nail me the worst. My friend who raved about and recommended this place told me that he really hoped I’d give them another try (fat chance) and that he didn’t buy into this whole “gluten / food allergy thing.” Do people really think we make up the pain and utter shittiness because its fun to give up things that taste good?

  7. So… I’m reading this in between dashes to the bathroom. I have no idea HOW I got glutened, but I want to die. No one understands that this lasts for days. DAYS! It’s not just a round of poopy pants, it’s stabbing pains, chemical smelling poo (sorry), my knees are creaking and hot… I am exhausted. I figure by Wednesday I may feel functional again.
    I hate this disease. I hate it more than anything I’ve ever been through and I had cancer.
    I need a sip of water then I’m off to the bathroom again. Fuckity fuck fuck.
    And your kids are adorable.

  8. I got gluten’d recently as well and it’s still messing me up. :/ The “brain fog” has cleared but I still have intestinal…issues. Thanks for the reminder that I am not along and it’s a BFD for some people. If we’re freaks, we’re freaks together.

  9. Oh WOW, that sounds dreadful. Perversely it is so affirming for me to hear that what I go through is ‘normal’. The gastroenterologist who diagnosed me recently seemed to have no understanding at all of the complexities and range of symptoms from being glutened. Joint pain! Migraines! Mental capacity of a 99 year old!

    The whole leaky gut response to dairy after a glutening sucks too. xx

  10. That sucks. I”m still trying to wrap my head around it, forget about trying to wrap it around friends and family’s heads. And I have banned that “it’s worth the tummy trouble” saying. I was using it when first diagnosed, I was used to the pain anyway, and it’s hard to kick it all, especially when I love eating out (ie hate cooking!). But I kicked my own ass into stop being such a lazy ass (although I’m still only 50% there) I admire everyone of you who have lived (and lived fully) most of your lives with this shitty disease. I’m so glad I found your blog, at least there are people in the internet-universe who get it 🙂

  11. I posted on my Facebook page this weekend that I was trying my first attempt at making gluten free yeast bread at home. One of my friends actually posted that he knew I couldn’t eat white bread but I should “live a little” because wheat bread is gluten free and that not ‘everything will hurt me’. I lost it. I told him wheat bread IS gluten and if I even TRY to “live a little” it will KILL ME. Arrrghhh!! Some people just don’t get it.

    • I also don’t understand why people who have no idea what’s what, decide to be experts on your disease. What’s the point of that? I don’t come over to your house and give you tips on being a douche bag.

    • grr…You would think our friends would believe us! Being glutened is like having the flu! If they know how that feels then they’d lay off the ridiculous comments!

  12. My granddaughter suffers from glutenizing and so I know how serious this sickness is. I seem to read so many comments from women. I assume men also have this problem? Or don’t they want to admit it?

  13. I am sooooooo new to this diagnosis of mine (Gluten allergy…not celiac) I am baffled when I read these posts and go ” duh of course this is my problem…how did my doc never get it?” And only after I brought it it him after 3 years of bloating so bad I looked prego, throwing up 3 times a day, feeling like I’m choking and being strangled, having so many ” so , I almost shit my pants ” stories, brain fog etc…I am literally 10 whole days into this officially as gluten free. I had something today that got me good and after fighting it I just puked sooooooo much and sooooooooo hard my throat is bleeding. I just wish I knew what got me??

    Bloated, swollen and crying in Indy

  14. dropped my kids off to school late last week because I shit myself after breakfast and *had* to have an emergency bath at 8:15 am. Not sure what I’m meant to write in the late slip…. “gluten”? Went home and cried in bed for a few hours and slept a lot for days. Aside from crapping myself uncontrollably (in front of my children, no less) the worst part for me is the vitamin deficiency & anemia. Can’t stop napping, and working out is so very hit or miss. Sometimes I get to the gym….and don’t work out, just shower cause the walk over exhausted me. Only once did I have the joint pain, but I had to use walls to help hold me up. 6 days GF and counting…but still have the sh*ts =(

  15. To Jules in Indy, Believe it or not, there is hope, but you have to take control of your life, and trust no one else with your health! My oldest son was misdiagnosed for 10 yrs.(don’t know how, as his symptoms were classic) He suffered a concussion when the pain was so bad that he passed out, two broken teeth, was 6 ft. tall, and was down to 113 lbs. Finally, a local family doctor told him just to try a gluten free diet for a month and see what happens. That was November of 2011, and he’s not had a major attack since then. We even found out that there was gluten in toothpaste! The first year was the hardest, but you just learn to become hyper vigilant. Matt is 32, and I’ve been working with him on meal plans, BTW, Namaste pizza crust mix is awesome! His friends have decided that they could live GF too after coming over for cookouts and such. No, you can’t go out to lunch with coworkers, but you can take your lunch, and order your drinks. And when you can have desserts like triple chocolate cookies, carrotcake cupcakes, and banana nut muffins, you can see the light at the end of the tunnel.

  16. It sounds like you and my husband could battle on symptoms. Bathroom trips, smelling like your insides are rotting, ashen color, brain fog, bloating, achy joints, lethargy, headaches, rashes, sinus infection soon after, can’t eat, has an attitude and is rude, and that doesn’t include the long term things. So far no cancer, but his teeth are rotting without enamel, his bones are deteriorating, mental health issues, and so much more that last for weeks and months afterwards.
    You are right, this is a disease! Hell, he’s Pennsylvania Dutch and would love to have a German Chocolate cake, donut or pot pie!

      • I’m just glad we figured it out. Our girls are also GF. If we didn’t figure it out with him, before them, this family would be a mess.
        I hope you’re feeling better soon. Try drinking some liquid aloe, up the probiotics, and vitamin D to recover more quickly.

  17. Kym Stroup, would love to know where you get your recipes for triple chocolate cookies, carrot cake muffins and banana nut muffins! I don’t have the disease, but my 16 year old daughter does, and it totally sucks! We all are eating a GF diet, except my 19 year old son who thinks its ridiculous. Anyone ever try the GF flour called cup 4 cup? Can’t wait for the day when labeling finally IS accurate, and restaurants get with the program. Love your blog, April. Oh, several of you mentioned rashes when you are glutened. Would love to know more about what that looks like and how you treat it. Thanks!

    • Laura, I found a recipe for GF all purpose flour in a book called Cooking for Isaiah by Silvana Nardone. She owned an italian bakery before becoming editor in chief for Everyday with Rachael Ray. Her son had to go gluten and dairy free. Since discovering her all purpose flour recipe, I’ve used it in place of regular flour in numerous recipes for cookies, cupcake, and muffins. I just make sure all ingredients are GF. It doesn’t do well in a large cake though, doesn’t rise evenly, and is crumbly. The hardest thing initially was sorting thru all the bad GF pastas and pizza crusts. My new rule of thumb is ” If the pasta or crust cooks in less than 10 minutes, don’t waste your time!” Namaste makes a pizza crust mix that is awesome! It’s got a wonderful aroma of herbs that hits you the minute you open the package. We have white chicken florentine pizza, or shrimp pesto pizza once a week, and it’s ready in 35 minutes. You can’t get carry out or delivery that fast! If you’d like any of the recipes, just let me know, or if you want the flour recipe. BTW, steer clear of Domino’s GF pizza. It is made on the same surface, and cooked in the same oven as their other pizzas, and my nephews wife had a serious attack after trying it.

  18. Pingback: Gluten-Free Smoky Chicken Chowder Because I Think It’s Fall | Gluten Is My Bitch

  19. WOW….i feel so bad for everyone with these horrible symptoms. I haven’t had symptoms this bad in some time. but i rarely eat any food i dont prepare at home and have 99% of a GF home. i have a job where i just simply cannot take unscheduled days off and i usually dont want to take a chance at most restaurants or people’s houses. Sometimes i think i need to loosen up a bit but then i read this and i’m sorta thinking not. i do get glutened via cross contamination here and there and i feel sick and have TONS of bloating. like huge basketball belly and feel like crap for ~ 3 days. i can still get myself to work but its not pretty. and i feel like i’m walking through water or quicksand. i do get skin rashes from time to time as well and recently had a HUGE breakout of what looked liked bed bug bites but later found out they were not (thank god) and were a form of eczema that never flattened out just stayed a big huge bump. i’m still convinced these were due to gluten that must have been in something i was eating daily that really wasn’t GF. they were all over my legs and left a few tiny scars but have since healed. its so odd how everyone has such different symptoms and it makes me wonder…..will mine change over time ? like i dont have horrible digestive issues now…but maybe someday ? i feel for you April ad everyone else posting here. and no people don’t get it but can they ? someone can describe how horrible chemo is to me but i will never fully get it if i dont have to go through it. i gave up trying to get people to get it a while ago. it just upset me to much !

  20. Yep people truly don’t understand, my gluten issues are not only stomach related but now to my joy, I break out in a itchy, red, I look like I have adult acne spots all over my chest, neck and face. So not only do I get wildly sick to my stomach if I eat gluten, and have the worst indigestion all the time, I get to look like a 13 year old boy that never washes his face. It literally makes me stay home whenever I get glutened, and not just so I can stay near a bathroom. I never realized how screwed up gluten is and how so many people think it’s a lame, made up diet choice you made so you can get skinny. So stupid people you can suck it and enjoy your stupid gluten. Didn’t realize how nice it was to vent to a group of people who understand. Thanks guys

  21. Been suffering for six years – migraines, bloating, joint and body pains, acid reflux, mouth ulcers, crazy thinking, ocd and depression. Had a plethora of tests – not celiac apparently, but when I eliminate gluten from my diet, my symptoms improve. When I eat gluten – well my bowels are cascading – mouth gets sore immediately, stinging pains all over body, neck swells, foggy head. Gluten sucks. Sometimes when I feel better, I forget how bad glutening makes me feel, then may have a bite – then I go stark raving mad. Trust me it is not worth it – the paranoia, ocd and foggy head are a killer.

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