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).

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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)?

xoxo
Lauren

Twitter, Facebook, Flickr and Foodbuzz.

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

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{ 62 comments… read them below or add one }

Fuji Mama February 15, 2010 at 6:45 pm

Wow, thank you for sharing. It's good for us to become more educated. Fabulous post, and I'm SO glad they finally figured out what was going on!

Mallory Elise March 12, 2010 at 4:15 pm

Ahhh i was just thinking if other people get extremely painful leg pains during the week after being glutened (why does it take so long to get out….) i live in Brazil and everything says "does not contain gluten" which is soooooo nice (not all things do that in the US) so i get comfortable….but then at restaurants…….last saturday we went to a restaurant, and i thoughte everything was fine. then right after we went to like a home-depot style store and i was pushing the cart—bent in half. My legs had already started hurting in the car, which is my first sign of "oh. shit." and then that was it. i get such terrible terrible pain in my thighs and calves, like a dull throbbing that makes them feel like bricks and my ankles hurt to move. i said i ate gluten and my husband didnt really believe because wheat isnt THAT prominent in brazilian cooking…then for the next week chronic stomach pain, we're runners and i can't run when it happens, the pains reach from the guts to the ribs to the shoulders and make me want to vomit. and the leg pain comes in and out. i dont want to each anything, a few fruits and raw vegetables. i hate it how right afterwards you get so afraid of any food other than plain rice, it's hard not to as i'm sitting here with my legs throbbing!!!!

Dawn Wentzell March 13, 2010 at 1:13 am

I'm glutened right now. Ugh. It's my own fault, I eat foods I am not sure about all the time. Sometimes I get lucky, other times I don't. But I hate to be the one amongst my friends who doesn't get to eat at lunch because the restaurant they chose has nothing suitable for me to eat. Or because I don't want to be the picky order-er who modifies a dish till it is not longer the same item. Or the one who has to explain to yet another waiter exactly what foods I can and cannot have. It's tiring, so sometimes I don't bother.

Luckily for me, my symptoms are not too severe – relatively, anyway. I get the stomach cramps, but they are more uncomfortable than anything else. I get gassy and bloated, but rarely have any major stomach issues. I do lose all my energy though, and that is tough to fight. People have a hard time understanding that "being tired" is a real and legitimate symptom.

Shana May 5, 2010 at 6:10 pm

well, I have been celiac sence May of 2009 and what happens to me is I get extremly sick and throw up and I have to go to the hospital (not including the details) it was awful!!
I’m going to this celiac camp this July and am wondering if any of you would like to come?

Shelly Brown May 10, 2010 at 5:37 pm

I got glutened two days ago and my shoulder is in such pain. I had a designated gluten-free dish at a restaurant Saturday afternoon and about 24 hours later, I was lifting a heavy pot of home-made spagetti sauce when it felt like my left shoulder was ripping apart, I was fine one minute, then the next, I was in such pain, I could barely breathe, barely lay down. I blamed it first on twisting the wrong way with the heavy pot but combined with fatigue (I slept all that evening and most of the day today, home sick from work). Before I went gluten-free, I had chronic problems with my right shoulder and neck, I haven’t had to deal with that pain in months since going gluten-free. This time it was mostlly my left shoulder, migrating to my right shoulder today. My stomach feels like I need to prick it with a pin and the night I got glutened, my heart was racing, making it difficult to breathe. Can anyone tell me if these symptoms appear similar to their own? The shoulder pain feels so much severe than “joint pain”. My usually supportive husband is acting like the shoulder pain is an injury, independent of the GI symptoms I’m having. I’m so frustrated, people don’t understand.

Deeba PAB May 27, 2010 at 2:48 pm

That is a scary experience. I had little clue about what being a celiac is, but thanks to your post, I pretty much do now. You are a brave girl Lauren… glad you’ve completed a ‘gluten-free’ 2 years!

Cayte May 27, 2010 at 2:48 pm

Hey Lauren,

My Name is Cayte.

I’ve been free for almost 13 years now. But truthfully, Not fully free, My last (and so far worst) -as you call it- Glutened, It was about three years ago, I had (yeah I know) made a huge mistake and ate at a china buffet with my grandfather who had come down for the weekend, so about an hour later we were sitting at the dining room table playing a board game when I started to react the gluten.

Well first I felt the tell tail cramps, and then my behavior started to change, first I started to laugh uncontrollably at anything, and then I started to cry well I laughed because I couldn’t stop, It was the scariest thing that has ever happened to me, I had NO control over my emotions what so ever.
But it made me not ever want to eat gluten again. I had a lot a gluten that day, and It was really bad, Plus I am also allergic to dairy (though not as bad as the rest my family) so as an added bonus I also had super bitchiness too, that came right after my gluten “attack”

Lol that’s pretty much what happened to me.

~Cayte

cecedon May 27, 2010 at 2:49 pm

It was 3 years for us on new years day. we aren’t celiacs but eliminated gluten for another reason. I have to say the first month was the most difficult and now when people find out that I don’t eat wheat they say things like “oh my that must be so hard” and I reply with, not it’s not hard, it’s just different. Once you life isn’t centered around gluten it’s really not that hard at all. Don’t you agree?

Swathi May 27, 2010 at 2:49 pm

Lauren,

You are a brave girl to fight with this disease. Thanks for stopping by in my blog.

I have a suggestion for you, if you like you can try Indian vegetarian cuisine with rice.

Shayma May 27, 2010 at 2:50 pm

i loved reading about your story- i have a very dear friend who is a celiac and my sister’s best friend is also a celiac. whenever she comes over we make sure we have some rice for her. she seems to have taken this into her stride- lives a good, healthy life. i am in admiration of people like you – who are so brave and adapt their life to any sort of shortcoming- such as not being able to eat gluten- it must be tough to avoid that- bravo to you. best wishes, shayma

Kellypea May 27, 2010 at 2:50 pm

Happy anniversary to you! Unfortunately, my oldest son hasn’t kept himself from gluten and so deals with the misery. When your kids are as old as mine are, you ask about their health, listen, and then ask one very hard question: are you willing to deal with all of the repercussions of not caring for your body long term? It’s so sad. On a different note — I SWEAR I’m making the challenge this weekend…(runs to kitchen…)

Hallie May 27, 2010 at 2:50 pm

Happy gluten-free anniversary! I’ve been gluten-free for about a year and a half. I totally know what you’re saying when you talk about the slow, rolling pain in your abdomen after eating gluten. I haven’t been officially diagnosed as celiac, but definitely experience the bad side effects when I eat gluten, so I suspect there’s something there.

Isn’t it great to blog your way through living life without the gluten? It makes the journey so much more fun. :)

gfe--gluten free easily May 27, 2010 at 2:51 pm

Great post, Lauren. But, I’m really so very sorry that you got glutened. I’ve been gluten free for 6 1/2 years now. I still say that despite the fact that yes, I have been accidentally glutened a number of times. My reaction each time is different. I believe I react differently depending what the particular gluten is–whether it’s wheat or barley–and how much gluten there is in it. There have been times when I’ve had to vomit immediately and actually felt pretty fine afterwards (although I don’t recommend making one’s self vomit). There have been other times when I’ve gotten a scratchy, tingly throat immediately and stopped eating it. I still suffered later. I usually have symptoms within an hour or two. This will sound pretty bizarre, but if I get glutened, I always have a stiff, left shoulder the next day. (Others have reported similar, very specific joint pain issues that they’ve come to associate with being glutened.) But, my reactions widely vary. Digestive issues like diarrhea, bloating, constipations, stomach cramps. I can feel like I have the flu with body aches and nausea. Sometimes my first symptom is a headache (I had almost daily headaches before going gluten free). Sometimes I get the brain fog; i.e., feel very spacey. Often my mood changes … feel down or angry. That’s not an all-inclusive list by any means. Gluten really can do a number on folks. It’s only when you remove it from your diet and then accidentally get some that you truly realize how it affects you IMHO.

Tom Malterre Skyped into our last support group meeting and when he was asked how to handle an accidental gluten ingestion, he suggested activated charcoal or bentonite to absorb the gluten and get it out of one’s system. Of course, always check any such advice with your doctor for your own personal situation, but food for thought.

My doctor believes that even after all this time, my gut is only 60% healed. Dr. Peter Green, one of the celiac experts, said recently that he doesn’t think anyone who is diagnosed as an adult ever completely heals.

Oh, and I agree with you and others who said it doesn’t have to be hard … it’s just different.

Healing hugs to you, Lauren,

Shirley

Susie May 27, 2010 at 2:51 pm

I am so glad you were involved in this month’s DB challenge. You have opened my eyes to something I knew so little about. I went gluten free for a week, just to see, and it was much easier to do than I expected. It was fun to do the DB and even more fun to munch on those Nanaimo Bars!

Heather May 27, 2010 at 2:51 pm

thanks for sharing your story. happy 2 year anniversary! that’s so wonderful. i am 1 1/2 months gluten free. and you’re so right, it’s wonderful when you find out the cause of your stomach pain. getting the gluten out of my body has been great! i’ve had 2 cross contaminations that i know of so far. the first time actually made my body react like i had a cold and allergy symptoms. sounds weird, but true! the 2nd time was more severe. it tore my stomach up. i knew it immediately after eating the food. i felt like i had food poisoning. and the worst was the same night i ate it, then it took me a few days before the occasional stomach pain stopped. it is not fun at all. it makes me not want to eat out ever again.

Brandy May 27, 2010 at 2:52 pm

Hi Lauren!

My name is Brandy and I’ve just been diagnosed with lactose intolerance. My doc also told me to watch how I react to things with gluten in it (and since I practically lived off pasta and breads, that wouldn’t be difficult). I went to Macaroni Grill with my family and was very diligent about avoiding all dairy. My actual meal didn’t even contain gluten! But the appetizers did. And about an hour later at the grocery store, I felt all the usual symptoms: nausea, dissipating energy by the second, that uncomfortable feeling in my abdomen and then it hit! I found myself doubled over and crying from the severe cramping. So I decided right then, no more gluten! I’ve been gf/df for about a month now and I finally feel like myself again. I’ve had a couple of run-ins with gluten (and dairy) and cursed my immune system for attacking me so. I’m still searching for foods that don’t make me sick. Your blog has been quite helpful and inspiring! (as have my parents and dear dear boyfriend who has offered to go gluten and dairy free with me once we move in together.)

Thanks so much!!
Brandy

Jenna May 27, 2010 at 2:52 pm

Hey Lauren! I’ve been following you for some time now and I truly enjoy all your beautiful photos and helpful recipes and tips!! I’ve been gluten free for about 8 years now. Your description of what it’s like to ingest wheat is Spot on!!! I just last week got glutened and it’s still making me feel like a zombie. It’s the first time in a long time though so I’m happy I’m being much more careful than I have in the past! Thanks for being so inspirational!!
Happy Gluten Free Anniversary!
Jenna

Linda May 27, 2010 at 2:53 pm

Hi Lauren,
Congratualtions on 2 years gluten free, and your approach to it. I am always impressed with your positive creativity!

Everyone’s comments above are appreciated too.

And life happens, full of mistakes. Speaking of wheat pasta- I accidently bought, cooked, and sampled quinoa and wheat pasta. It was in the gltuen free section of our store. It really does take vigilence to read labels all the time. To side step the landmines.

Tia May 27, 2010 at 2:53 pm

Oh GOSH, the pain that gluten causes can’t even be put into words. And we’ve all been there. I know the exact feeling you had when you found out you had eaten wheat pasta instead of rice. Terror.

I usually know within about 15 minutes if I’ve had gluten. I don’t even have to have eaten it. One time all I did was kiss my kitty on her cute little button nose, and the scent of her cat food was overwhelming. She had just eaten.

…oh no.

I spent the next 2 days in bed, unable to lift a finger.

It takes days for me to recover from the smallest amount.

Sarah May 27, 2010 at 2:53 pm

Hi Lauren!

First of all, thank you SO much for blogging your experiences and recipes. The encouragement and ideas and support I receive from people online is incredible.

I’ve been gluten-free for 5 1/2 months. It’s the best thing that ever happened to me! While I haven’t been able to do any testing yet, I’m fairly certain I have celiac and not just gluten intolerance (because of my whole-body reaction and other family members with gluten issues).

During the last five months I have only ingested gluten on purpose once, because I thought I could beat it, and yes, I know that was incredibly dumb. When I get glutenized, despite my best efforts (other than that first time), I get really grouchy and emotional; bad back, shoulder, and neck aches that lasted three days; stomach issues; brain fog; no energy, drained; once it felt like my whole mouth felt had been burned. Usually symptoms last around three days.

Again, thank you so much for blogging! I’ve never commented on your blog till now. Please know that you have helped me a lot. Thanks. :)

And Happy Anniversary!

withoutadornment May 27, 2010 at 2:54 pm

Congratulations on 2 years! :)

I found out that I was intolerant to gluten when I was 10 or 11. I went off it for 6 months and then I started eating less glutenated things like kamut, spelt, etc. I have to admit that I was also afraid of people making fun of me in elementary school/junior high because I couldn’t eat “normal” food. As a grew older, my reaction to eating gluten became worse and worse – digestive problems, huge headaches, moods, extremely heavy periods, no energy, and the list goes on. So, gradually over the last 11-12 years, I have eliminated gluten entirely from my diet and I feel so much better for it!

gluten-free freak May 27, 2010 at 2:54 pm

Hello Lauren! Thank you so much for this great post, it’s so interesting/educational to read the first hand accounts of how people react to gluten – such an evil little bugger!

And a BIG congrats on your 2 year gluten free anniversary! I’m coming up on #1 – so this is still pretty new to me yet – but I am starting to learn the signs of being glutened. I agree with Shirley that my reactions seem to vary on the type and quantity of gluten ingested – and was surprised to read what she wrote about people getting the same specific joint pain, because I seem to get a very particular headache.

If it’s been a doozy of a glutening, I get classic flu symptoms: vomit, diarrhea, body aches, and then that lovely headache sets in. It takes about 3 days to recover, or at least get out of bed – so I completely relate to your panic – because if I get hit hard, I am down for the count.

Like Heather, if it’s more of a cross contamination issue, I seem to get cold/allergy symptoms – especially in my left eye! I’ll wake up and it will be super puffy and goopy – so not cute! My best friend is celiac and has had the same issue and had to have surgery to clear her tear duct it got so bad. We lovingly refer to this condition as “dog-eye”. Looking back, I’ve always had sinus problems that seem to have gotten better since I went 100% gluten free – I suspect there is a connection between inflammation in the intestines and sinuses, at least for me.

My main focus right now is exploring ways to detox after a glutening, (if that’s if even possible) and learning how to repair the damage it’s done – because unless we live in a bubble, it’s going to happen from time to time. Like Shirley, I take activated charcoal, and I drink a ton of aloe juice to cool and soothe the inflammation (it helps detox too) and I also drink coconut water to replace potassium and electrolytes.

What a crazy journey we are all on! Thanks again for sharing yours!

G. May 27, 2010 at 2:54 pm

I’m only recently diagnosed since Christmas. It was a rough Christmas. I feel like I’m still learning a lot about what I can and can’t eat. Mostly my body will tell me when something is not right. The last time I got “Glutened” would be last week. Someone brought some veggie chips to a party at our house and I read the label and they seemed safe but, later on that night I didn’t feel so well. I dug through the garbage and found the bag and read in the small print that they were manufactured in a plant that processes wheat…oops! The next day was not fun to say the least. I’m learning to be more careful about label reading and the more I educate myself about the disease the better. Thank you for your blog..I enjoy reading it.

Shelley May 27, 2010 at 2:55 pm

Lauren what a powerful post. Everyone who has asked my husband to “just pick out the croutons” from the salad should be forced to read this. Thanks for the comment on my blog, I continue to try to develop more gluten free recipes for my husband, so visit again. I hope sites like your continue to develop an awareness of celiac disease and how poeple can still eat well and healthy without gluten.

Kat May 27, 2010 at 2:55 pm

Thanks for posting this. I’ve been gluten-free for 2 years as well but with no official diagnosis of Celiac.

My reaction to gluten is quite extreme, I get a rash called Dermatitis Herpetiformis which is basically hives that last for me 4-6 days. I have a post about it on my blog scdkatfood.blogspot.com

Trish May 27, 2010 at 2:55 pm

Yep, sounds so similar to what I’ve heard described. How awful…most of us have no reaction to food other than to gain weight. I guess what I see the most, Lauren, is that there is this need to really UNDERSTAND food, its contents, additives etc. I think that is a lesson for all of us…to be aware…much much more aware of what we are eating, whether or not we have allergies. Some stuff we ‘put in there’ just is NOT healthy!

Heather @ Life, Gluten Free May 27, 2010 at 2:56 pm

I have been gfree for about 2 years too. But, I was glutened along the way (mostly with supplements that were falsely advertised as glutenfree).

When I was first diagnosed, I was having terrible stomach pains. It was horrible and I was scared. When I was diagnosed, I felt the same relief because then we know what was wrong and we could do something about it.

Since then, when I was “glutened” I had mild symptoms like nausea, bloating – etc…

I am sorry you had to go through that recently but glad you are doing better now.

For my daughter, she had Dermatitis Herpetiformis. It was really awful. She is better now but she also has allergies and eczema.

My husband is also gfree but he has not been tested. He was having some symptoms and after being gfree, he was accidentally contaminated with something a co-worker brought to share. It had those teeny tiny wheat noodles in it and he broke out in a rash immediately. We are pretty sure he has either celiac, gluten interolance or an allergy.

Jenn May 27, 2010 at 2:56 pm

Actually my husband just got glutened tonight. He realized it a couple bites in that there were croutons in his salad. Once he figured it out, he said he might as well enjoy it since he is already going to be sick, and so voraciously ripped into the fresh baked bread on the table to enjoy it. Ha not sure this was the best idea…..

Kj May 27, 2010 at 2:56 pm

Thanks Lauren, Al’s been GF for 6 months and I am sure will have ingested gluten accidentally… She does have mood swings and loss of energy and some headaches but hey, what 13 year old doesn’t. I will start to call it the hidden GF affect instead of hormones! We just try to do our best.
I am worried for her, what will happen if she does ever eat full blown gluten-full food. Time will tell.
Keep up the great blogging

Kimberly May 27, 2010 at 2:57 pm

Hi Lauren,
Congratulations on 2 years without gluten! I’ve enjoyed reading your blog in the last couple of months and am grateful for both your willingness to share your pain and progress with so many and also for your yummy recipes!

I am Gluten Intolerant and have been gluten-free for a little over a year. I have had several accidental glutenings – usually when we eat at one of our familys’ homes. Mostly they try to be careful but a fully-glutened kitchen is a cross-contamination disaster waiting to happen.

Usually i can tell if i’ve been glutened within about 20 minutes because i start ‘inflating.’ That lovely feeling in the digestive tract starts that says, “something’s terribly wrong.” My fiance says he can tell if i’ve been glutened within about 1/2 an hour because i start looking at my feet – i get terrible bone and joint pain. It’s usually about 3 days before i feel like i’m functioning properly again and about a week before my energy etc is back to normal and the ‘you look like death’ bags under my eyes go away.

I’m currently trying to plan our wedding for this coming fall and have found it to be difficult to find vendors competent to serve a GF meal and GF wedding cake. Though i think i’ve found people who will take precautions, i am still terrified i will get glutened on my wedding day – imagine all of that tummy pain while wearing a corset and trying to look cheery for 150 guests, ugh…

Anyway, here’s to the first two years for you and many happy thoughts for safe-eating in the years ahead!

Kim May 27, 2010 at 2:57 pm

Congrats on your 2 years!!!

It has been a while since I have gotten glutened, but Jon, my son, got glutened last weekend. :(

Iris May 27, 2010 at 2:58 pm

Happy 2 year anniversary! And so sorry you got glutened…that’s the worst.

What happens to me is not physical at all. Instead I get super anxious, mean, and stressed out. I get into a huge fight with my boyfriend (yes, every time), then I get really depressed and go to bed to sleep (and cry) away the gluten. I wake up depressed, but generally feel fine by about midday the next day. Then I apologize to my boyfriend, he tells me I’m like the exorcist when I have gluten, and I vow never to go to that particular restaurant again.

Oh, and I’ve been gluten free (except for the occasional restaurant glutening) for 6 months now.

Lorraine @ Not Quite Nigella May 27, 2010 at 2:58 pm

Oh you poor thing Lauren! I really felt your pain, it was very well described. It’s terrible when you are served things that you aren’t allowed to eat. A friend gets it with nuts and both can have terrible consequences for the eater. I am glad you are getting better! *HUGS*

Theresa May 27, 2010 at 2:59 pm

Poor you!
I’ve been GF for just over a year now, but had to get the biopsy half way through last year [which meant I had to knowingly eat gluten for three weeks!] It was terrible, so I know how you felt. My symptoms are mostly energy and mood related. :S

Two years though? *High-five*!
Love your blog!

Barbara Bakes May 27, 2010 at 2:59 pm

I had no idea the result of eating a small amount of gluten could be so awful. You are an inspiration! Keep up the good work of showing others GF food can be delicious!

Dharm May 27, 2010 at 2:59 pm

Thanks for sharing what happens when you get Glutened. Eye opening for a lot of us!

Seth May 27, 2010 at 3:00 pm

been trying to be gluten free for 7 months. still trying to get used to not eating bread or anything like that. when mom found some stuff online that would of explained my stomach cramps and general pain, i was eating the BEST plum jam i had ever had, already 6 slices in with 4 more to go, as she read aloud i grew sadder and sadder. looking at each piece of already jammed bread, saying to myself “damn damn damn” (like Doc from Back to the Future). a week later we got tested and it’s really hard to remember not to eat the stuff i love, but i did finish that jam. with a spoon instead of bread. 2 days ago we ordered pizza from Domino’s with out thinking. 4 slices in i was like “OH CRAP OH CRAP!”. still hurt. i will say that Alka-Seltzer helps alot if you get gultened.

Y May 27, 2010 at 3:00 pm

Great post, Lauren. I’ve always wondered how bad the reaction was.

Chelsey May 27, 2010 at 3:00 pm

Hey Lauren!

Love the responses you’re getting. It’s something I’ve always wanted to know, how people react and all. I have an on again off again relationship with gluten. I am not celiac, But If I eat it I cry easily, I’m tired all the time, I have headaches, and body aches.

You’re probably wondering why I ever go back? I’m still not sure it’s the gluten. You see even being off gluten my symptoms don’t entirely disappear (although they do get better). I find if I eat a lot of baked GF goods I still feel bloated and nasty. So, I am still deciding is it the gluten? Is it? And if I am not celiac, do the same rules apply? Is it quantity, or even trace? I wish I could just “know” the right answer for sure. Then I could get on with my life!

Fabi May 27, 2010 at 3:01 pm

Wow Lauren,
I guess this is a whole new to live and to thinh but besides the painful incident it seems you’re doing great. Big hug and congratulations: as you said you know what the problem is and you don’t have to take drugs, jus take care of what you eat. Big hug.

Jordan May 27, 2010 at 3:01 pm

I’m personally not celiac, but my grandmother was. It was a really hard time for her when she first got it because the doctors didn’t know what was wrong with her and it was basically robbing her of any nutrition. Her and my parents bought a house together so we lived together for a few years. It was hard for me coming from a place where I had no idea that such a thing even existed. But suddenly I was warned about cross contamination and she had her own of everything (peanut butter, margarine… you name it. I was always on edge about it, but she seemed to be able to cope, and once they got it under control she was fine :)

I really admire you for being so positive with something like this… it’s really inspiring!

Simone May 27, 2010 at 3:01 pm

Wow Lauren. I don’t have any experience with gluten or celiac disease so thanks for sharing that. Now at least I have an idea. I never thought of someone with celiac as being happy to be diagnosed with the disease but then I didn’t think about the relief you indeed must have felt when you found out what the problem was!! I hope you never have to experience eaten gluten again!

elislunch May 27, 2010 at 3:02 pm

my son has been gluten free for a year now, he is 5. i keep everything in the house gluten free but he has been “glutened” a few times. especially in the beginning. he becomes “wild” well, that’s putting it mildly. :D i usually will send him outside and he runs around screaming at the top of his lungs. i’m sure the neighbors love it. one of them told me they thought he was hurt the first time they heard him. also his bowels movements change and he complains of a head ache and other random aches. it’s no fun for any of us.

Rachel May 27, 2010 at 3:02 pm

I was -thrilled- when I was diagnosed almost 5 years ago. The constant pain, brain fogs, and health issues were getting to be to much. I couldn’t function… good luck keeping a job, or excelling in school when most of your day is spent in bed sick, and not knowing why!

My parents were extremely supportive, I tried hard… but work, school, friends, and travel seemed more important. I told myself (stupidly) that I was going to die someday anyway, so I might as well die enjoying what I eat.

Luckily a dear friend finally helped me see the light, and I’ve now been gluten free dor almost two years.

Unfortunately accidents still happen… and it’s not pretty when it does. How did we live with the pain, the bloating, the crabbiness, the god awful mental confusion… and so much more? I can’t begin to imagine living like that – constantly.

My personal reaction is typical (so it seems)… my joint pain is almost immediate. 10, 15 minutes after eating… my legs become worthless, I can’t move them without crying.. my back spasms, my hands get cold… head starts to fog over. Moodiness ensues… constipation and insomnia (somedays for up to two weeks) follow.

The first thing I do upon being glutened is drink water. Lots and lots of water… and I normally swallow a low dose pain pill and a benadryl and go right to bed. Even if it’s 10am in the morning, I will dope myself up until I -have- to get out of bed for work, or something that can’t be put off. This seems to downsize the reaction… making it slightly more manageable.

And thanks for sharing! It’s difficult sometimes… you feel very alone when you’re friends are eating take out and can’t sample… or someone wants to have you over for dinner, but thinks you’re just being a ‘picky’ eater. It’s good to know other people have conquered!

Alta May 27, 2010 at 3:02 pm

Congrats on 2 years GF! I totally understand about the feeling of realizing you’ve been glutened. I notice it about 20 minutes after I’ve eaten it – it’s only happened in a sizeable amount once (I ate at a sushi place – stupidly – and they told me there was no soy in the seaweed salad, but there was), and I can totally relate with the way you feel as it goes through your system. Yuck. So glad you have an answer to your issues, and have been on the road to recovery these past 2 years!

Sara Dee May 27, 2010 at 3:03 pm

Hi Lauren, congrats on 2 years! I’m a Celiac Teen as well (diagnosed 1.5 years ago, but having problems for 4 years). It was such an incredible difference when I stopped eating gluten – I had so much more energy and excitement for life, and I started gaining weight again!

I totally understand how horrible it is to be glutened… I feel like I have no energy, my body got run over by a train, and my stomach LITERALLY looks like I’m pregnant – as a slender, athletic teen, this is one of the most embarrassing things ever. Then comes the sickness, brain fog and headaches for at least 3-5 days…

While this is not a lifestyle I would’ve chosen for myself or for anyone else, it definitely makes things better. I have to constantly remind myself of that when I’m with people eating “normal” food. It’s very hard, but living a typical, energetic life is absolutely worth it.

Good luck to you, and keep posting :)

GlutenFreeNursePractitioner May 27, 2010 at 3:03 pm

It happened. The moment that is regular visitor to my bad dreams. I had 10 hours of school yesterday, so after, my friends and I went out to a local pub. I opted not to eat because I was unsure about cross contamination. I ordered a cider and ejoyed it so much I ordered another. When the next one come I took a big mouth full. I stopped, I didn’t swallow, panic took over. It was not a cider but a regular beer.

My very best friend was sitting right next to me and she knew exactly what happened right away.I was standing there petrified, mortified and just plain upset. The mouth full of beer was about 3 second from being sprayed all over my unknowing friends. My awsome BFF grabbed my arm and an empty glass and I spit it out. I walked quickly to the bathroom and washed out my mouth( like that was going to do anything).
When I got back people just didn’t understand what the big deal was. I was a bit hurt that they could comprehend the consequenses of what had just happened. I would have felt a bit better if they were all lay people but they wern’t. You see, we are all nurse practitioner students at a very forward thinking school. They SHOULD know better.

I think that was the suckiest part of the experience…so far. It has only been 12 or so hours so the worst is probably yet to come.

Trissa May 27, 2010 at 3:03 pm

Thanks for sharing this Lauren – it is truly an eye opener. I remember years ago when people would say they were gluten intolerant no one knew what it meant. With people so willing to share information such as yourself, you are teaching everyone to be more tolerant as well! Well done.

Isabelle May 27, 2010 at 3:04 pm

Happy gluten-free anniversary Lauren! Great post!

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)

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