What’s it like to be glutened?
In a word? UGLY.
A little background first for those new to the blog. I got diagnosed about five 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 4.5 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.
Maura
198 days ago
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!
The Gluten Dude
198 days ago
My pleasure. If you have any more questions, ask away.
anne
197 days ago
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?
The Gluten Dude
197 days ago
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.
Melissa
185 days ago
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
The Gluten Dude
185 days ago
Ain’t celiac fun??
Allie
152 days ago
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.
The Gluten Dude
152 days ago
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
Kelly Williams
94 days ago
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!
The Gluten Dude
94 days ago
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.
Margret graf
89 days ago
Great post, keep the information coming!
The Gluten Dude
88 days ago
Thanks Margret. Will do my best.
Melissa Booth
88 days ago
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.
Great site btw!
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.
The Gluten Dude
88 days ago
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.
Julie
13 days ago
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
The Gluten Dude
13 days ago
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.
Julie
11 days ago
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.
The Gluten Dude
11 days ago
Glad to hear you’re on the mend…