What’s it Like to be Glutened?

whats it like to be glutened

In a word? UGLY.

A little background first for those new to the blog. I got diagnosed about four years ago with severe celiac disease. On day 1 of my diagnosis, I went gluten-free and never looked back. Actually, that’s not true. I looked back a lot; but never gave in to temptation.

Fast forward 3.5 years. I am out with Mrs. Gluten Dude at a sushi restaurant to remain nameless. (But if I were to give it a name, I would call it A-1 Sushi in Langhorne PA.)

Now as most of you celiacs know, going to a new restaurant is an adventure in fear and anxiety. Really takes about half the fun out of eating out. So I walk in and go through my usual spiel with the manager.

“Are you familiar with gluten?” (Blank stare…not a good sign.)

“Is the sushi rice cooked with soy sauce or just vinegar?”

“Any chance of cross-contamination in the kitchen?”

Blah, blah, blah, blah…

It all seems safe. So I order my usual dish: three salmon and avocado rolls. I ask for the spicy mayo sauce on the side and again ask about the sauce to make sure it is ok. I am assured it is.

We eat. We enjoy.

As I take my last bite, the manager comes over and informs us there’s been a mistake. The spicy mayo sauce does have gluten in it. Our jaws hit the floor. “You’re telling me now??????”

Guess what the manager did next? Let’s play multiple choice:

Did the manager

a) give us the check, charging us full price for both of our meals?
b) charge me a dollar extra for my poisoned sauce?
c) both of the above?

If you guessed C, pat yourself on the back.

Now this is the first time I had ever known that I had gotten glutened so I had no idea what to expect. Would I start projectile vomiting on the table? Would I die a slow, tortuous death? Would I spend the next 5 days in the bathroom?

So what happened? Well, at first…nothing. That night…nothing. The next day…nothing. Was my GI doctor wrong? Maybe I don’t have celiac and it’s all been a big mistake.

And then on the second day…BAM! Like a ton of gluten free bricks. Pure exhaustion. Stomach pains. Anxious. Just a mess. I was a physical and emotional wreck. Lack of focus. Lack of patience. Couldn’t sleep enough. And it lasted for SIX MONTHS. Wouldn’t wish it on my worst enemy.

So if you have celiac and you’re tempted to just have a little gluten, please don’t. And if you’re in Langhorne PA looking for sushi…well…don’t say I didn’t warn you.

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42 thoughts on “What’s it Like to be Glutened?”

  1. This was incredibly helpful. I think my daughter may have a gluten allergy. After reading this I am even more convinced.
    Thank you, thank you!

    1. I have been wondering for a while now if I have a gluten intolerance or celiac disease…. It’s just my symptoms are so inconsistent so I’m not sure what to think. I have a really sensitive stomach, chronic heartburn, acid reflux issues, broken out in some sort of eczema rash 2 times in the past two years and my head feels crazy… I just want to know what it could be. Before reading about gluten I would tell people I felt foggy…. like my mind was just cloudy, it’s hard to explain and feels odd. Worried I’m crazy honestly. And I have to mention that I have horrible anxiety, the kind that takes me from being happy and fun loving to never wanting to leave my house. I thought it was from a phobia of throwing up, but it has got to be more than that. Any advice?

  2. Wow, what a story, and how crazy that we both write similar stories the same day!

    I had to laugh about your anticipation scenario waiting for something to happen and thinking you didn’t have celiac. I wrote about the same exact thing! But then when I started to laugh, my back hurt too much from all of the vomiting yesterday, and I am reminded by how wrong that is.

    I cannot believe it lasted 6 months for you, that is really horrifying. I am still worried something else will creep up on me, since I am less than 48 hours out. Do you all the sudden feel like a fog cover has been lifted from your head?

    1. I get that episode of vomiting like every 3 months I am prob getting cross contaminated because I def try to be diligent. It takes around d 3-4 days to get less foggy, etc.

  3. I know…how funny is that! (The similar post…not the vomiting.)

    My recovery was a real gradual thing, but then all the sudden, as my wife said, “I was back”. My usual happy, sarcastic self.

  4. Great post. We’re all different, that’s for sure. I have DH, so within about 24 hours, I know I’ve been zapped with gluten cooties. Nasty blisters on my elbows that last a couple of weeks, low energy, lack of focus (as you experience), headachy, flu-ish feeling, emotional. Takes a week or more of serious cleansing to get rid of the poison. Glad it’s not 6 months! Ugh! Great blog, by the way.
    Melissa

  5. yeah… had a similar story. I was out to dinner with another celiac friend at a pizza place we heard about that had GF pizza/pasta and beer!

    Woo hoo – we went, asked too many times about everything being gluten free, split a pasta dish and a pizza… raved, then we see the manager come over and tell us they accidentally served us REGULAR pasta! They did NOT charge us, so that was good, and we quickly left – because, like you said, what was going to happen?!

    My poor friend was sick to her stomach that night, but me – nothing! Well, not nothing, my main symptom was anemia – so I know for sure that the lining of my intestines was likely damaged, I wouldn’t be absorbing nutrients, and it would take a few weeks to get back.

    Needless to say, we never went back.

    1. Unreal. Glad to hear you didn’t get too sick. But lord knows what was going on with your insides. Can’t imagine why you didn’t go back 🙂

  6. I just happened upon your blog and it all made sense. Why my 9 yr old celiac daughter grabbed my arm and begged me to stay with her while my husband was trying to get them to school. Why she has been weepy and a little sassy and has had a headache and stomachache for weeks. She was at an ‘informed’ friend’s house and the mother served her rice with regular soy sauce. She took 2 bites then asked if it had soy. Mom replied with a look of horror that yes,it did!! My 9 yr old quickly asked for plain rice without soy sauce on a clean plate with a clean fork. Such an amazingly responsible child. It breaks my heart that this happened to her. And that I can’t control it 100% of the time.
    But the last 2 weeks now make sense. No vomiting or bowel issues (oh wait!!!! She’s been constipated all week!!!!) but her mood, and obviously her gut, is the reaction. Damn this disease!

    1. Sounds like you’ve raised your daughter to be her best own advocate. Kudos to you (and her). So glad I have celiac disease and not my kids.

      Damn this disease precisely.

    2. That has got to be horrible having a child with Celiac. It is hard enough for adults to make sure they don’t eat gluten, but a child who is put in front of many different circumstances with food – beyond their control. You have a very smart daughter who was so very smart to know what to eat and what not to. My daughter has been tested and so far so good..no celiac.

  7. Do you not have GI symptoms? That was my biggest clue. I really thought the other stuff was my thyroid which as you know is commonly an issue too.
    I know if I get glutened within a few hours. But I am literally physically ill for about 48 hours then continue with the fatigue and brain fog for a good week.

    It’s funny. True celiacs who have been symptomatic for a long time before diagnosis would rather do about anything but eat something with gluten.
    My best advice would be to stick to the outside aisles in the grocery store and make any sauces yourself using only the most trusted manufacturers. 😉 Great site btw!

    1. I do have GI symptoms, but they are not as severe as other people have them. My main symptom is just feeling really, really off. Very tired. Very fatigued. Out of sorts. Cranky. Real pleasant to be around.

      Appreciate the kind words about the site.

  8. Hello Gluten Dude, I posted a week ago or so; recently diagnosed.

    Went to a Mexican rest. the server assured me that the taco’s were 100% corn, no wheat, chicken was not cooked with any flour. Got really sick, ended up in the ER. However, these symptoms were different than before, I always would get stomach cramps and diarrhea, this was severe abdominal cramping that brought tears to my eyes and now I’m constipated. ? Going to follow up with my dr. tomorrow, (was at ER on fri.).

    Had a shingles vaccine that same day. But.

    I bought these gluten test kits from a lab in Florida, and had brought half of my lunch home; the food tested “highly positive.” I wonder if I am getting more sensitive if I get glutened…since these symptoms were different. or maybe the shingles shot did not help. I’ll never know, I am real reluctant to eat out, or eat only salads and bring my own salad dressing.

    Still feel like crap, pardon the pun. My abdomen still hurts from the cramping. what a great weekend. Called the rest. and the manager said the tacos were not 100% corn. go figure. offered to accommodate me with 2 margarita’s….I said I’ll take a vodka, I’m sure you can’t guarantee me that the mix is GF.

    All this made me wonder, now that I know I have celiac, I could mistake symptoms for something else, lets say my appendix ruptured, or if I had a bout of diverticulitis. ? I’ll think I got glutened.

    Once again thanks for this blog.

    Any thoughts would be appreciated.

    Julie

    1. The Gluten Dude

      Oh boy…stay far away from that restaurant from now on. Bunch of idiots.

      And when you go out to eat, yes bring your own dressings, sauces, etc.

      To answer your question, I’m not sure you will know. All I can say is that you know your body more than anybody else. And if in doubt, don’t take chances. Go to the ER.

      1. Thanks Gluten Dude, good advice. I was in such a brain fog, I could not figure out how to post on a more recent set of posts. Now that I subscribed, I’ll be in the current loop. Today is day 5, I woke up feeling almost “normal” after my Friday fiasco. whew…does it feel good.

      2. Just a thought or warning, check the ingredients on the vodka. Seriously, my GF friend recently got very excited because she found wheat free vodka. It hadn’t occurred to me and while I’m sad for the pain she went through until she realised, I’m happy to give her pain a reason for being and share the wisdom with whoever will benefit.
        Just a thought. Hope you stay well here on in.

  9. Ryan @ Spicy Richmond

    Just found your blog and I love it!! I recently found out I have a gluten sensitivity among multiple other allergies. After reading a few of your posts (especially the one by miss de meanor who didn’t test positive for a wheat allergy) I think I may have more of a gluten issue than I thought. I was told I didn’t test positive for wheat or yeast but did test positive for oats, rye, barley, malt, and hops. Since my doctor told me I wasn’t allergic to wheat/yeast I’ve been trying to find products without the other grains and whatnot but am still having trouble. It’s becoming very apparent that I’m going to have to fully commit to going gluten free. Glad to have found your blog!

  10. Hi G-Dude,

    Thanks for this post. I was diagnosed about two months ago and had my first glutening last weekend. Peanut butter in Steak N Shake milkshakes is NOT gluten-free.

    The first night I had insomnia so badly I didn’t sleep until 5:30 am. Since then a few stomach issues but mostly just severe fatigue. Is that normal? I’ve had to take two naps a day and just the thought of cooking dinner exhausts me. I have to really rally to get that done. Feel somewhat depressed and a-motivated as well. I got laid off and am not working now. I’ve been able to keep up with a good, productive routine to keep myself busy at home all day, but this past week that has been impossible. I feel like my old self, B.D. (before diagnosis).

    I hope I don’t have to deal with this for six months like you did! This disease is no joke.

    Thanks for lending your virtual ear (eyeball).

    1. The Gluten Dude

      Sorry to hear Alexis. Fatigue is my number one symptom and how long it lasts seems to be pretty random. But yes…it can drag on for quite some time.

      Hang in there. Lots of water. Take some probiotics. And no more Steak n Shake for you 🙁

  11. I think the worst part about being glutened for me is that the symptoms always vary somewhat! So at first I’m always unsure of if I’ve been poisoned or if I’m just sick….
    Apparently was glutened this weekend (my fault, silly me was starving and in a rush and forgot to question the rice…)…didn’t feel off till that night when I started getting nauseous which continued on and off through Monday, until Tuesday night where I begin to feel much more nauseous (as well as this is about the time I noticed that despite having eaten well, drank plenty of water etc…I was so bloated I looked about seven months pregnant -_-). Woke up in the middle of the night and was very sick though till the late morning, finally started to feel better (by this point I’d already googled everything I’d eaten for the last week) and then the pain begin to strike. So now I’m waiting to get off work so I can curl up in the fetal position and spend the next couple hours deep breathing my way through the pain….
    It concerns me though because I know that in retrospect this was quite a substantial amount of gluten, and it makes me wonder how often when I’m feeling off/bloated etc it’s just teeny amounts of gluten that I haven’t been able to find yet…
    Uhg. If I could at least just have a certain set of symptoms every time I was glutened it would make it much easier to figure out which food did it.

  12. rice is gluten free, but some celiacs can’t digest that either. I am one that can, with no problems at all. However, I tried making gluten free bread in a brand new bread maker. I used the gf recipe for the machine, got sick. I used “Pamela’s” all ready gf mix…got sick.

    Who knows what is in it that makes me sick, might not make you sick.
    bread machine sits in the garage.

    It is all trial and error…

    I order Kinnickinnik (sp)? bread, gluten free FACILITY, their bread does not make me sick, and they don’t charge 80 bucks to send it, a flat rate of 10 bucks no matter what you order, or where you are, (US and Canada)

    they now have dinner rolls, their bagels are too sweet for me. but I love their sandwich bread. and they are efficient, no nonsense. and no I have no association with the company.

    next topic,

    the symptoms can vary for me too. Sometimes my heart races out of my chest, and/or my gut is so compromised, I am on the toilet breaking out in a sweat b/c of the pain.

    I don’t eat out anymore. I am lucky to be in the frame of mind to say, f**ck you if you don’t understand, if I was younger and diagnosed I don’t know how I would have ended up, born in ’56. diagnosed in 2012.

    And I am lucky to be retired on an island where food does not have to be a huge part of my life; the ocean, sunset, the moon…makes it all good.

    the friends that don’t get it, well, screw em. I’m too old to keep hisplainen.

  13. Thank you for the enlightenment on rice!
    What is the website where you order the bread, pls?
    I buy my bread at trader Joe’s, but you probably don’t have that in paradise?

  14. kinnikinnick.com I think their bread is better than Udi’s, or Rudi’s. The last few times I have ordered, they have thrown in a bag of dinner rolls. No we don’t have a Trader Joe’s on this island, but we do have all the big box stores.

    remember that I’m talking about plain rice, nothing like Rice Pilaf by Near East, that is not GF.

    1. Their dinner rolls (I think they are called tray buns) are awesome! We also love their English Muffins. Kinnikinnick is the brand that they serve at Disney World. My daughter was SO HAPPY to have bread there.

  15. Gluten can definitely cause massive fatigue and brain fog. I was diagnosed at Mayo in 1999 with fibromyalgia. In addition to pain, I had lots of overwhelming fatigue, dizziness, and cloudy thinking. Didn’t have any stomach problems until about 2 years ago. Since my daughter has Celiac, that was the first thing I had checked. My blood test was negative. I live in a rural area now (mind-blowing being from Jersey and all) where I’ve had to adjust to not having access to things quickly. The wait time on getting an appointment for the “gold standard” biopsy was more than I could wait … I was SO SICK and just couldn’t force myself to eat anymore gluten to have the test done. So I classify myself as gluten intolerant (likely to be Celiac, but doesn’t matter b/c treatment is the same either way). So what’s my point? Once I went GF, some of the things I had attributed to fibromyalgia got BETTER. I had gotten to a pretty good place, but after cutting the gluten I had more energy, needed less sleep (and felt less sick if I didn’t get enough sleep). My joint pain improved. And some days I even feel a little bit smarter … more “on my game”. It was kind of like a “magic wand”. Before going GF, I just couldn’t get it all together at the same time, and after if was SO MUCH BETTER. I don’t have a giant reaction if I accidentally get glutened, but my heart goes out to all of you that have that problem. Going to the ER or being sick for MONTHS b/c of someone’s ignorance or irresponsibility is not acceptable. (You guys are all so nice … I would have refused to pay my bill … and they’d be lucky I didn’t punch them in the throat; FYI, if a Jersey Girl ever says, “Hold my earrings”, RUN! Just sayin’). Anyway, you guys all ROCK. Hang in there!

  16. I have horrible gas, bloating, and gut pain. I noticed after eatting english muffin, it gets worse. It is bad, tired, thyroid disease,lack of energy, heart disease. Getting tested this week.

  17. Wow, six months, that is just terrible.
    I´ve been knowing about my histamine intolerance for more than 2 years now, which means I cannot eat citrus fruits, legumes, soy, tomatoes, cured, pickled, aged or fermented foods, alcohol, soy, eggplant, spinach, dairy, msg, strawberries, pineapple, pears and many more.
    Thought I had found the reason for my worsening fatigue that apart from other symptoms started when I was still a child. When sticking to my diet I used to be quite fine for a long time.

    Only recently the extreme fatigue (and insomnia, diarrhea, anxiety, joint problems, sore neck, shortness of breath, heart arrhythmia, nausea, brain fog etc) got to a point that made normal daily life impossible, together with my histamine intolerance getting more & more extreme, i had to cut out so many more foods… I was looking for answers, so I got my blood tested for celiac, but it came back negative, yet I started to cut out gluten (+sugar & caffeine) 8 weeks ago, cause I cannot continue to live this way.

    I felt okay-ish, but didnt notice a big difference, to be honest, only the nausea & brain fog abated a bit.
    Then, last week thursday I had a major food meltdown with gluten AND histamine (told myself I should provoke a reaction to see what´s going on). Next day: brainfoggy, a bit comatose maybe, but not as bad as I thought it would be. Saturday: WAY worse, anxious, wired but tired, depressed, extreme exhaustion. Sunday exactly the same. Monday a bit better. Then I dyed my hair, now I know it had hyrolysed wheat protein in it. From tuesday on diarrhea, feeling sick, nervous & lousy.

    Maybe gluten is a problem for me after all… and I see that this late onset & duration of symptoms is not unnormal indeed! Unfortunately, here in Europe doctors know even less about celiac or NCGS than in the US.

  18. Wow, that’s rough. Luckily for me, while my sensitivity seems to be really high, the symptoms I get when I get glutened are not as severe as what you’re describing.

    Like you I don’t usually notice it right off – it’s a day or two later, but for me it’s mostly mild stomach pain and discomfort and it only (!) lasts for a week or two.

  19. I am in the midst of a horrid glutening, so please bear with me. I’ve already forgotten several of the sentences I had in mind. I live in China, which can be good, as the labels always show gluten by this one tell tale character 麦。They can’t disguise it with Latin names cause they don’t have them! Haha.

    However, I was so involved in asking the waitress about flour and bread, I forgot to ask if there was soy sauce in the cauliflower dish! Maybe I didn’t expect It, I just didn’t think. The reason I was eating out instead of cooking myself, was that I was in the city where my school sent me to get a medical cause my passport expired, and so I needed a new medical

    I mention this because it may help a lot of you to know that because there was soy sauce in the dish, and because I took a bite, I had gluten in my system before I got the medical. No one ever lets you see the medical, so I always snap a pic with my iPad. And so, I have an actual picture of what it feels like to be glutened! This is a huge relief to me, cause I try to explain that crabbiness, that rage-mimicking shakiness that is so unsettling you can so easily fly off the handle, and it’s like an uprising on the cellular level. Anyway, I want to show you all the two ECG pics, one glutened, and one not. How can I do that? I’ll try pasting them, but if it doesn’t work, I will email them to gluten dude! Thanks for this site! I loved reading the one about the rage and the two year old! It’s unreal, but it’s true! The ECG with gluten is the one with the zigzag vibration lines – and I can feel my whole blood system and nervous system just shaking.
    I’m sorry… But does this post show up right away? I’ll push the button again and hope it won’t be posted three times…I’m in china and the Internet sucks.

  20. On the highway home from Thanksgiving dinner at the inlaw’s (who took excruciating attention to ingredients.) They understand Celiac Disease. So on the 405 hwy in LA, my husband noticed my pained expression. He pulled over in Monrovia, where I had projectile vomiting in a parking lot. I was so sick. Not the first time it happened.

    The IgA antibodies course through the system for six weeks or longer. Turns out that bro had made a sandwich on the cutting board used later for dinner prep. I felt awful that they had been careful but never really grasped why it was necessary. Parts per million. That’s an extreme number, even for the brilliant people in our family.

    So I hated eating anything for a while. I stuck to fruits, veggies and steamed or grilled meat, but only long after the initial illness subsided. It’s always going to be this way.

  21. I just so happen to stumble across your blog today and after reading multiple entries I saw this one and clicked on it. Having been diagnosed only 2 months ago, I have been reading everything that I can on CD. Just about everything that I have read so far in your blog has feels like it has been a direct reflection of my life. Then this article….
    My boyfriend and I love sushi and hibachi so much that we would go out multiple times a month. However since I was diagnosed I have been scared to go anywhere besides the 3 places that I know offer a gluten free menu. Last week I received a birthday invitation to celebrate my friends birthday at my favorite sushi restaurant. I have been contemplating on taking the risk…That is, until I read your entry. See my favorite sushi restaurant is called A1 Japanese Steak House located in Langhorne, Pa.
    I know that it has been years since you have written this entry (and things could have changed since then) but knowing that they assured you that there was nothing to worry about. Then telling you (that they poisoned you) only after you were done eating and then charged you the full amount of your bill is ridiculous! I will (sadly) never set foot in there again.

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Who I am. And who I'm not.

Who I am. And who I'm not.

I AM someone who's been gluten-free since 2007 due to a diagnosis of severe celiac disease. I'm someone who can steer you in the right direction when it comes to going gluten-free. And I'm someone who will always give you the naked truth about going gluten free.

I AM NOT someone who embraces this gluten-free craziness. I didn’t find freedom, a better life or any of that other crap when I got diagnosed. With all due respect to Hunter S. Thompson, I found fear and loathing of an unknown world. But if I can share my wisdom, tell my stories and make the transition easier on you, I’ve done my job.

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