2 Years Gluten-Free

by Lauren | Celiac Teen on January 30, 2010

Okay, so that isn’t technically true.  I have accidentally (and very unfortunately) ingested gluten in the past 24 months.  However, 2 years ago (at 5 o’clock to be precise!) I was diagnosed with celiac disease.  The moment I found out, I was thrilled.  Overcome with relief.  We knew what was wrong.  It could be fixed.  There were no more drugs (those came for other things).

So maybe you’re wondering what happens when someone gets “glutened”.  Sure, as celiacs we cannot eat gluten, but what actually happens when we do?  By some unfortunate twist of fate, I was recently served wheat pasta instead of rice.  I only had a couple of bites before I was certain.  Then I ran over to my mom and got her to check it.  I was frantic.  I just ate wheat pasta. My heart was in my throat.  Pulsing and making breathing laboured.  Colour exploded across my face in a mixture of anger, sadness and nerves.  A tear spurted.  Taking a step back, I caught my breath.  This will be okay.  Let’s just take it slow.

By the time it hit my stomach, I could feel the confusion.  “What’s that doing here?!” the acid screamed.  Over the next day or so, I felt it as it moved through each part of my digestive tract.  Beating up my small intestine, draining all of my energy as it attacked not only this invader, but me.  Being autoimmune, celiacs attack their own small intestine when gluten is present.  Goodbye long villi.  Hope to see you soon.

It wasn’t a searing pain, but it hurt.  More than uncomfortable.

The days that followed weren’t great.  Occasionally the pain would peak as the gluten turned a corner or hit a extremely sensitive section of my intestines.  Other than that, it dully moved along.  Dull but powerful.  Like one of those new-fangled vacuum cleaners that suck without any noise, the gluten robbed me of any energy.  It also stole my appetite.  Coming in waves I would feel pain worming through my abdomen.  Slow, yet not, I could only wish it was gone.

I ate food, but not much.  Oranges and clementines and cheese and tapioca pudding were my main food groups.  I’m sure there are foods you’re “supposed” to eat but I didn’t feel good, and energy was hard to come by.  The couch and computer (where I didn’t actually do much of anything) was where I stayed. I did go for a long walk at one point, but that only helped while I was walking.  The second I got home, I was wiped.  Luckily, I didn’t have school during this gluten incident and I sure hope that I don’t have to experience it in the future.  At least not soon.

I’m glad this gluten incident is over and even more thrilled that I’ve been celiac for 2 years.  I  know that I will never knowingly eat gluten again, and that is one of the most wonderful things I know.  Gluten-free food can be absolutely delicious.  Even the bread (which I have an upcoming recipe for!).

So tell me, how long have you been gluten-free?  What are your experiences with getting glutened (if any)?


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[edit: this post is linked to Get The Gluten Out]

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{ 14 comments… read them below or add one }

polarbearscooby May 27, 2010 at 3:04 pm

I’ve been GF for about 6 and a 1/2 months. While I haven’t been OFFICIALLY diagnosed with Celiac (my Doctor is rather stupid and says the tests are always inconclusive and won’t do it) there is no doubt in anyone’s mind that I have it.

The last time I got “glutened” was sometime in November or so I had eaten at an Applebee’s (which are usually really good about it) when we had to stop at an autoparts place to get something for our van (tail light). It was 6 degree’s out and all of a sudden I felt the pain…and then the gut wrenching I have to go NOW feeling….of course the bathroom was NOT heated. I spent a good 1/2 in there…

I’m still trying to figure this all out, it’s very confusing and complicated sometimes…I love your blog tho!

Kristi (aka polarbearscooby)

Ms. Whiteplates May 27, 2010 at 4:50 pm

Oh. My. Goodness. Reading everyone’s comments about leg pain and “mysterious” pains struck one of those moments in my mind. My entire life I have struggled with incapacitating leg pain, it’s a dull pain, as if I had run a marathon when the only thing I did was wake up in the morning and eat a bowl of cereal. What I didn’t know was that the gluten in that cereal was causing that pain and the myriad of digestive issues and lack of energy that would suddenly come over me. As I write this I’ve been gluten-free since just before Christmas and it has been marvellous! I can’t even express my absolute joy at my wellness. I always thought people kind of felt like crap all the time and felt mysterious – I say mysterious because the pain seemed without merit- pains in their bodies. Now I know that isn’t true.

Congratulations Lauren on being healthy for 2 years! I’m still in the stage where I’ll see a former restaurant I love(d) and realize there isn’t a thing on their menu I can eat, or my favourite dish is packed with wheat. That means I’ll sometimes eat something without even thinking, food that I always ate before and within minutes I’ll know I’ve done something horrible. My husband is fantastic about giving me “the look” and I just nod simply. I wish he had been with me today when I absentmindedly threw a chocolate bar in my cart at the store. I really, really wish he had been home when I opened that chocolate bar and nibbled on two sticks of it, gluten-packed wafers and all. I could blame the stress of taking a very naughty and mischievous 2 year old to a restaurant for my lapse (or the pandemonium that ensues when shopping with two small and rambunctious but sweet children), but ultimately it was me who ate that and when I’m exhausted tomorrow and curled in pain, I’ll know it was my fault. I almost cried when I realized what I had done.

It’s gets easier I’m sure and it hasn’t been that long. Amazing how old habits can screw you.

Canadian Twentysomething May 29, 2010 at 10:51 am

What a good description. A month or so ago my friends and I had a potluck, and I thought I did well, eating the salads, twice-baked potatoes and chicken wings, but after about half an hour I knew something was wrong. Everyone was full, but there was something beyond the being-full pain. It was the oh-so-familiar stabbing pain of gluten. It lasted 5 days overall. I rarely left the fetal position on my bed, and when I did I would suddenly keel over in pain while walking to class or wherever. I was so exhausted, and the pain kept me awake for the first few nights. It seems the longer I go without eating it, the worse the episodes are, which just strengthens my resolve to stay away.
People thought it was a phase I was going through when I first self-diagnosed 3 years ago, but now I don’t care what they think, because I remember going to school every day from grade 1 to 2nd year university with a searing stomach ache, which my mom chalked up to “anxiety” (well…gluten does make you anxious, as it turns out). I am just so happy to know that the pain can be prevented as long as I am careful. How lucky are we to know the cause?

Susannah May 29, 2010 at 1:09 pm

I’ve been gluten free since the beginning of Febuary, and in March when I found out I have acid relfux I discovered that I cannot have tomatoes, dairy (although I can have our raw goat’s milk!), peanuts and chocolate (I am a big chocolate lover, so that was hard!). Last time I was glutened was end of March when I did it to myself. We went on a mini vacation and I really didn’t have any choice but to eat it too. I get headaches, stomach and intestinal cramps so bad from eating offending food that I am stuck in bed 😛

I hate it when people just don’t understand…”surely that little bit of gluten can’t hurt you, can it?”

I’m finding great recipes here! Although, I’m kind of holding off on sugar, I still got honey :)

JR May 29, 2010 at 1:17 pm

could it be just the grains? Corn or rice? or maybe dairy.

Barb August 22, 2010 at 1:14 pm

I was gluten free for 15 months when I got gluten at a restaurant. I’d eaten there many times, they have a great gf protocol for their kitchen, but a lazy chef made my salad from the line instead of the protocol mandated back room fridge. After I ate part of it, I saw a crouton sitting on the cheese. The manager was horror stricken as they work with our local CSA chapter all the time. It turned out that the cheese on the line had become contaminated with the croutons. That night I had insomnia just like before my diagnosis. The next day I felt like a truck ran over me. It has been a month and the neurological symptoms are finally going away.

Casey Watson October 6, 2010 at 7:27 pm

I just found your site, and I have to say I love it! You’re so creative, bold, and fun! I have to try one of your recipes soon, most likely the pierogi one, wish me luck haha. But congratulations on staying gluten-free for two years! When I found out, it was bittersweet- I would no longer be crying on the bathroom floor, but then I couldn’t eat most of the foods in my house! I have been gluten free for almost 9 years now, and it’s only getting easier. I used to have to order GF foods from Canada! Haha, I live in the US so that’s was kinda far. But now GF is in my local grocery store, there are so many options, and lovely recipes to choose from! The latter thanks to people like you! Anyways, I’ll let you know how my pierogi turn out (i’m not that much of a chef, and I’m in a small apartment) but it should be fun either way!

Caitlin January 31, 2011 at 9:08 am

Hi Lauren,

I’m really happy I came across your blog. From one gluten-free teen to another, I understand how difficult it is to steer clear from such tempting products. Your description of the wheat pasta confusing and bothering your stomach was dead on. Great job on staying gluten-free for two years! I hope to reach that goal one day and will continue to read your updates.

Jenny March 16, 2011 at 9:55 am

I have been gluten free for…1 month! Its not a record but its a start. I was diagnosed 9 years ago, but I cheat…alot, I pay for it, but at the time i’m eating its like this is sooooo good! Then after I finish it…”oh dang!! I shouldn’t have eaten that!!!” but of course by then its to late. But this year i am determined not to “cheat” or at least the rest of this year 😀 lol because as I get older my symptoms worsen. It used to be a slight stomach ache, and a rash. Now its HUGE stomach pains, fatigue, my heads foggy and I forget stuff really easily, a red rash covers my arms and legs it itches and it burns, It would look like a sunburn except its march, and it doesn’t cover everywhere, just in patches. But I have now been gluten free for 1 month and the rashes are starting to dissapear. I’m so happy, its starting to get warmer now (85 degrees) and i can’t cover them up with a sweater anymore, this year I am determined to be different. I am going to STOP eating gluten just to stop feeling bad for making people feel guilty for forgetting. (thats gonna be the hard part!) My goal is be gluten free forever, I have a chart thats helping me be gluten free. The chart says “Gluten free for..” then a circle with the number of days I have not eaten gluten, and underneath that “days” Its keeping me motavated because if I eat gluten I have to go right back to 0, and I dont’ want all my hard work to go to waste. The comments that I read, and your story have really helped me. If so many people can do it…so can I! 😀 Thank you!

Lorna October 4, 2011 at 12:03 pm

thank you so much for sharing your stories and recipes,, they are a blessing, I was diagnosed celiac 1 year ago,, a couple of months ago my 18 yr old daughter, who was often ill, but I didn’t really put celiac and her illnesses together, one day she said I am going gluten free,, and she immediately felt better, she has cheated a couple of times and says its not worth it :) So, we wil be using your recipes !,,I have a batch of your quick easy cinnamon rolls cooling on my counter now :) … I have recently become lactose intolerant so I used almond milk and an egg, instead of the buttermilk,, the dough felt really good,,, thanks again for sharing

Katie October 11, 2011 at 6:46 pm

Hey Lauren! I’ve only been gluten free for about a month. My symptoms have really improved, but last week I totally messed up. I had a bad day so at lunch, I indulged and bought a cookie. It a new diet for me so I wasn’t thinking much about it and once I got halfway through the cookie I stopped and realized- oh crap. I handed off my cookie to a friend and less than half an hour later I had a stomachache and I had a really hard time focusing in class. By the end of the day I had a raging migraine and could barely function in school. There was a rash on my face and my knees started aching. I just went home but I couldn’t sleep it off because it kept me awake till early in the morning. It was a good learning experience though- now I have a very good reason not to cheat, and I’ve gotten a lot better about thinking out my meals befor I dig in. Thanks so much for sharing, it’s encouraging to know I’m not the only teen with this problem!

Grace December 18, 2011 at 8:27 pm

I self diagnosed myself with it about 3 weeks ago. Everyone thinks its a phase, and my parents are getting annoyed. I’ve gone about 4 days without eating it….lol. I keep cheating, and I pay the price too every time. It’s not serious enough to keep me in bed. I just feel really bloated, get an itchy rash in some places, and feel tired and fatigued, but it only lasts a day or so. It’s my new year’s resolution never to eat it again, but I’m starting tomorrow. So its a 2 week early new Year’s resolution

Bob December 31, 2011 at 5:26 pm

Thanks for this, I am just finding out that I have cd and this was quite helpful!

Darci January 6, 2013 at 9:29 am

Hello Lauren,
I found your page looking for information on what happens when someone with Celiac accidentally eats gluten. I was desperately searching for personal stories that I could pass on to the staff at my daughters school. She was diagnosed 4 weeks ago and I have been diligent with her foods, what an amazing difference it made within days! The problem came this past Friday after picking her up from school, she has horrible tummy pain, cramps, and tears and confusion to accompany the pain. I asked her what she ate at school and she said ” cupcake” …. My heart sank, after very clear verbal and written instructions the school ( her teacher) still gave her a gluten full cupcake.
My daughter has Down’s and isn’t able to determine what is ok and what is not ( not yet, she is too young) she also is not able to verbally explain her symptoms and extent of pain. The school gave it to her without a thought of what was to come…. It is now Friday and she is still in my bed in pain, loss of sleep from doubled over tummy ache in the night, she wakes up gasping and twisting over in pain. I am meeting with the school this week and will be educating them more about the seriousness of the disease , as well as what they did to my little girls. I will be sharing your page as well because it is written by someone who has experienced the pain, rather than just the mom of someone.
Thank you for sharing your story…it really helped.

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