Thursday, October 6, 2011

confessions of a former gluten cheater

We've had a lot of new members join our gluten free support group in the past year and one thing that has truly resonated with me is their struggle to go completely gluten free. To quit gluten completely.

If you've been gluten free for a while this may seem strange. Why would anybody be willing to eat foods that harm them? 

But for people who are brand new to this. People who suddenly have to change EVERY aspect about how, why, what, and where they have been eating... it can be a truly painful change. Trust me. I remember. I know. I get it. And with other foods, I still struggle. (I'm currently trying to cut sugar and all grains from my diet and it is a continuing challenge.) 

So this post... it's for all of you who have had trouble in the past, or are currently having trouble giving up gluten. 

I was in your shoes once. I've been there. You grew up learning about the food pyramid (or if you're as old as me, the four food groups) -- milk, vegetables/fruits, eggs, WHOLE GRAINS -- which usually ONLY meant WHOLE WHEAT if you lived in a small town like I did (who ever heard of quinoa?), these were all toted as super health foods. 

You ate every meal without giving a second thought to a food label, how the food was prepared, or who made the food (and what knowledge they may or may not have about gluten). You didn't think about crumbs on your counter, the toaster you used, the wooden utensils used to prepare your meal. 

Life was easy. Eating out was easy. Holidays were easy -- well, at least when it came to food -- the relatives might be a whole different story. 

But you were sick. Yet because it had gone on for so long...the stomach pains, the migraines, the severe diarrhea 20 minutes after eating, the skin rashes, the constipation, the fuzzy brain, the emotional ups and downs, the bad moods, the constant worrying about where the bathroom was located no matter where you were... you lived like that for so long... it seemed normal. Why change it now? 

It seemed like the loss of pizza, ice-cream (hello cookies and cream), BREAD, lasagna, muffins, cake, pasta, cheeseburgers... an ENTIRE food group... was literally impossible. You would have to give it all up. Don't tell me about the gluten free alternatives right now... for somebody -- if you were anything like me -- somebody who depended on food much more than I ever realized, it was an absolutely devastating loss. Yet, I chose to do it. Maybe you didn't choose. You were TOLD to do it. By the 35th doctor you had seen over the past 5 years. And for many people, that would be a relief. But maybe for you... even if you did "choose" to do it because you realized gluten made you feel really crappy -- to give it all up? It's still a huge loss. 

EVERY. SINGLE. TIME.. that you sat down to eat life would be different. Birthdays, holidays, family gatherings, just heading through the drive through for a cheeseburger or fries... you wouldn't be able to do it anymore. Or at least not without a LOT of thought involved. 

And who wants to really think when you just want some daggone french fries?  

I've been there. 

The first two years of being gluten free... I ate it anyway. I lied to myself, to others. I didn't eat it often, but there were times I just had to have it. It was like a drug. My husband would order a pizza from our favorite place and I'd HAVE to eat just ONE piece. One piece won't hurt. 20 minutes later I'd be running to the bathroom. I'd blame it on something else. It was the pork sausage or the cheese (and ironically, later, I realized both of those foods hurt me too... lol)... but surely it WASN'T that ONE stinking piece of pizza. It was NOT that crust. I refused to believe that. I didn't want to believe it. Then the next day the headache would follow. 

For many of you it's the stomach pains that clue you in... for me... it was the migraines. The migraines literally knocked me out for two days. Two days was a blessing...sometimes they would last a WEEK.  The diarrhea? That was a breeze compared to the migraines.. so much so, I didn't even think of it as a symptom. 

And even though deep down I KNEW that the food was hurting me... there were days I honestly thought it was worth the migraine. Because I was so addicted to gluten, I could not give it up. I was willing to eat foods that literally were destroying my intestines because I just couldn't give them up. 

Some days I'd almost get by with it. I'd sneak a piece of pizza or garlic roll or french fries from the McDonald's drive thru... and sometimes I wouldn't even hurt -- maybe I got lucky, maybe it was a fluke... but then the next time I cheated the reactions would be 10 times as bad as they were before. And those days that I didn't eat the actual piece of pizza, I thought I could get away with just scraping off the toppings... (trust me... that doesn't work either!)

Eventually about 2 1/2 years into the gluten free (or the "NO, I don't really want to be gluten free") journey... we had a vacation. Our vacation for our 5 year wedding anniversary. 

I packed well. I brought Bob's Red Mill bread mixes. I brought gluten free cereal. I had gluten free snacks. I had every intention of cooking at least MOST of our meals in our Gatlinburg cabin. I even found an awesome gluten free bakery that made us a gluten free anniversary cake. 

But it was our anniversary! AND I wanted to go out to eat. Unfortunately, that part of Tennessee didn't exactly have the greatest gluten free options available. I WANTED pizza. I WANTED HOT rolls. I WANTED pancakes from one of the 10,000 pancake restaurants in the area. And I CHEATED. I cheated BIG TIME. I ate gluten the WHOLE week. 5 days of gluten. I actually didn't feel that bad the whole week. 

And then it happened. The day after we left Tennessee... we were finally home from our trip, it was time to get back to real life and back to work. I felt the migraine coming on. It was slow, but severe. The type of migraine you could easily black out from the pain. The type that came on slowly, but gradually caused such great pain that I thought I literally was going to die. For TWO solid weeks I dealt with that migraine. Two weeks of probably taking way too many over the counter medicines to try to control the pain. Taking prescription medications on top of that.... to only get maybe 1-2 hours of relief. And then it would start all over again. I had to manage going to work, but all I could do once I got home was literally fall into bed crying. Shutting the windows so the room was black... crying on my husband's shoulder... then dealing with more migraine pain from the sinus pressure of crying... it was a never ending cycle for two solid weeks. 

And that's when I decided enough was enough. No more gluten. None. Never. NO more. Never again intentionally. In the two and half years since that horrid migraine I haven't even touched gluten intentionally. I honestly lost all desire for gluten after that experience. 

So for me... even though I had been "gluten free" for nearly two years by my 5th anniversary... that was when the "real" gluten free journey truly began for me. 

And once I took this new lifestyle seriously, I began to realize the other foods that caused problems for me as well (namely dairy/casein, and soy). I started reading food labels fiercely. I started calling companies about food products and how they were manufactured. I started being a "gluten detective" as one helpful children's book described it. 

I started to realize my health was a gift, and I needed to protect it. I realized that life could have been so much worse. I may have had to go on pills for the rest of my life, it could have been cancer, it could have been something that I had absolutely no control over. 

But I can control this. By simply focusing on the foods I CAN eat... the joys that are abundant in my life... my friends... my incredibly supportive husband... my ability to cook and bake gluten free... I could do this. 

And I was worth it.  I was absolutely worth it. I still am. 

You are too.

Our journeys are different. Our reasons are different. You may be a diagnosed celiac patient. You may have discovered your gluten intolerance on your own like I did. You may be supporting a loved one by eating gluten free at home. Whatever your reasons.... they are valid. And especially if you are following this lifestyle/diet for your health, I think even if it's something you have struggled with in the past, you will eventually discover that your health is worth it. That to live well is worth it. 

And once you get there... Once you get to that place of being okay with who you are and what your body needs... you'll start to find joy again.

Are you a gluten cheater? Have you struggled with being diagnosed with celiac disease or gluten intolerance? Need help finding the joy in being gluten free? Let's chat! Check out the chat box to the left of this post, or leave a comment here on the blog. We'll talk. You can cry. I'll give you a virtual hug.

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  1. I love this post, Carrie.

    Since I accepted that gluten was the enemy, turns out only one of them, of my health, I have not consciously cheated once. That's been over a year. The adendum to that is that I mostly knew and wouldn't accept it for years prior. I know so well the mental games you mention: "it won't hurt really, just a little is okay," or my favorite and most often used "I just want something familiar, something comforting." Then the pain, the bloating, the hives, the variety of intestinal fun and games would begin. And when they had subsided (and sometimes even before) I'd do it again.

    You're so right, it is hard, amazingly hard. But, oh my gosh, it's also so worth it. As much as I love to cook, I so not love that I must prepare everything I make to feel safe. Heaven forbid I go to work without breakfast, lunch, and possible snacks in tow. What somehow happened for me about a year ago, is that gluteny things stopped seeming like food to me. I don't know how it happened. It just clicked, and I am so appreciative I cannot tell you.

    I wish that for all of us who struggle with this and other food intolerances.

  2. I was like you. I cheated for about four months until I decided it was enough. It became a crutch for me in college. If I was stressed, I would go for the bagel or pizza. I would get a combination of the diarrhea and the migraines. But I didn't stop until I went too far. I'm so happy to read how much you care about yourself and your body. We're all worth the effort it takes to be healthy

  3. I learned about Celiac from an online friend several years before I had issues with gluten. I sympathized with him and how hard it must be to avoid wheat, especially when I lived off of bread. Three years later when the stomach pains started and my first GI wanted to test for Celiac, I balked. Bread and cereal were my staples. (I also had a fear of being put under so the endoscopy itself was as scary as the loss of food for me.) But I did a lot of research, and the continuing worsening symptoms made me want to do something. So I went gluten free, on my own. When Celiac biopsies later came back negative, I didn't care. I felt better off gluten, and I've been off gluten ever since. I was never tempted to cheat, since the few accidental glutenings reminded me just how bad my symptoms were. I got really good at making recipes gluten free, and even created a bread recipe I made weekly.

    Then came the corn allergy diagnosis. That was/is my struggle. Suddenly all the nice gluten-free products had to have their labels re-scoured for corn products, and almost all of them failed. I can't even have store-made salad dressings because they contain xanthan gum or distilled vinegar (and that's the ones w/o HFCS.) All of the recipes I altered and created with simply gluten free didn't seem to work without xanthan gum and baking soda. After two very failed attempts at bread, muffins that didn't rise, and cookies that just taste right, I gave up on baked goods.

    Then I read that xanthan gum *may* be ok, and I decided to start cheating with regards to that one ingredient. If the only problem was that xanthan gum was in the ingredients list, I'd still get the product, which opened up several salad dressings and pre-made gluten free baked goods. On Tuesday, I was reminded that corn may be my silent killer if I'm not careful. (It causes GERD for me, and I have Barrett's, a precancerous condition that can become cancer if I can't keep the GERD under control.) So I'm trying to recommit back to my ever growing stricter diet (as I find more and more ingredients that are derived from corn.) It's hard sometimes - I was in tears just yesterday because I've not been feeling well enough to make food, yet there's nothing I can buy that's safe. My saving grace the past couple of days has been the prolific paleo recipes I'm finding online and have had some success with (I currently have a loaf of Elana's Paleo Bread in my oven - it may be my first successful bread since my corn allergy diagnosis in April.) It's definitely a journey.

  4. Oh my goodness I sooooo connect with this post! I went GF on my own after years of all of the same symptoms you describe as well as being diagnosed with stage 4 endometriosis. In researching dietary changes to help manage my endo I came across going GF and knew I had to try it. The first 6 months were so so hard and I cheated often (always regretful but never really learned my lesson ; ) In June of that year we did our 1st round of IVF, it was a bust and my body responded dismally to the meds. After that I cleaned up my act and truly stuck with the GF diet, in Sept that year we were able to conceive (with IVF) our little man. I swear I probably do have Celiac (funny how endo/celiac are both autoimmune releated and can produce some similar symptoms including infertility)and I think the only reason IVF even worked is because I went GF. I have not cheated since, it just isin't worth it to feel so sick, to be in such bad shape and to risk my own health just to indulge my cravings...(honestly what I wouldn't give for a large MC'd's french fry with about 15 packets of sweet and sour sauce(it's been almost 3 years and I still dream ) lol!) but I just won't do it. Thanks for sharing, I'm sure just about every other GF person on the planet can relate to this : )

  5. yes my dear, you are most decidedly worth it! Thanks for a great post.
    I must admit, I was 'blessed' with feeling so ill from gluten that I've never seriously been tempted to cheat. And yet I understand why people are.

  6. Great post Carrie - thanks so much for sharing your story. It did seem near impossible to give up all the bread and pizza when my son was told to go on a wheat-free diet. Fortunately over time, we've found some good gluten-free options and learned how to make our own gluten-free baked goods. I pack a stash whenever we travel, so there's no worries about not having a sandwich or hamburger for him when we land at our destination. For a little kid, he's amazingly disciplined - I think he doesn't want to experience the physical pain that he had when he was eating all the wheat breads.

  7. Carrie-

    This post is precisely why I love your blog. So real. So down-to-earth. Kicking gluten is like slapping the American diet in the face. It's not hard once you get going, it's only hard when you go out!

    Yup. I feel ya on the cheats. That was me last summer, trying to have a "last supper" with gluten.

    I've read that gluten-intolerance can be healed with the GAPS diet. I'm not sure if I have celiac, as I had the blood draw when I was GF for 3 months, but my panels have always come back high to wheat. Regardless, I am okay with no gluten. The subs are fine with me. It's just the cheese I miss. The pea protein "alternatives" are icky...

    :) Have you tried GAPS? I may soon...but I don't want to eat gluten again. I'd just like to seal my leaky gut.

  8. I'm the mom of a 7 year old gluten intolerant daughter. She had a really hard time at first, but the one who is the worst about cheating has been ME! I started out going gluten free with her, just to support her, and then I too craved it so bad I couldn't stand it, and with no physical symptoms, other than a fuzzy head and lack of energy, I didn't have the incentive to stick with it. My daughter on the other hand, is very strict, and refuses to knowingly cheat, after ingesting Ezechial bread with added gluten,(we hadn't read the label) writhing in screaming abdominal pain for a day and a half. She has cheated only a couple of times since, and hasn't had ill effects, but she decided on her own that she didn't like the way she feels when she eats it, even if it's not pain. She now REFUSES to cheat, and I'm ashamed to admit I've tried to pressure her before, when there was just no other food to eat, and she was SO hungry. She also tries to eat no artificial preservatives or food coloring. I haven't even considered going totally grain free or totally sugar free. What would she eat? The child would be drawn and quartered before she'd eat a salad. There's enough she can't eat already, and then WONT eat, and I have a family to cook for! I hate that ALL her favorite foods, (a.k.a. foods she would actually eat) are off limits, like chicken pot pie, spaghetti (We've tried the substitutions, and are not fans.) This has been really hard, because she's already picky, (she has an autism spectrum disorder and she has sensory issues, so there were only about 10 foods I knew I could get her to eat. Now they are almost all off limits.) Then I have to figure out how to pack a school lunch with no sandwich??? I shouldn't whine. Like you said, it could've been cancer, it could've been organ failure, or other diseases she has no control over. Thanks for giving people like me an outlet, so we can get past the whining, and get down to focusing on the positive.

  9. To Anonymous Mom,

    I know this may sound odd, but you may find some answers in looking into the grain-free options. You don't have to adopt the whole philosophy to find some kid and family-friendly Paleo options. I know what you're facing is huge, and I don't mean for a minute to underestimate the challenge. If your daughter and family can eat almonds, the possibilities with almond flour are startling. The end results are really good, feel and taste much like flour and butter, and (maybe the best part) are so quick to make and need very few ingredients. You don't need to invest in books either, unless you choose, los of recipes are online.

  10. Thank you Carrie. This is mostly my story... though I'm only gf for 9 months so far. Still struggling with the "cheating"- it's all so hard. The substitutions are great (love almond flour) but so expensive to use all the time. I've been feeling lost and frustrated lately, so this post was very timely. I have so much to be grateful for that being hung up on having to also be gf seems like a small blip on the radar. Again, thank you for sharing, it's good to hear that I'm not alone in my struggles :)

  11. I can relate to your tale. I had a few cheats when first going GF then a week in the hospital thankfully left me with no gluten-filled choices (they did a decent job, not all hospitals do). i felt a lot better. then i got more serious and realized just how sick the wheat was making me. some accidental exposures made me realize just how awful wheat was and I got food aversion to it. sometimes i still get really jealous of people who can eat wheat, but i can't figure out a way around getting sick, so it's not for me. luckily there are tons more GF products around these days and it's less isolating than it was back in the 90s when i first had to give up gluten. i still struggle with soy and cheating (oh just a little here and there) but I need to get more serious about it because it's not fun to feel sick, even if it's not as severe as gluten makes me feel. thanks for this reminder!

  12. Great post, Carrie! I've been REALLY gluten free for three years now. My last "I'll just try it" experience was a cold bottle of Hoegaarden beer on a hot summer day. An hour or so later it was vomiting and diarrhea at the same time. Fun! I swore off after that. At least I was home! Since then, I have expanded my baking repetoire, searching out the truly gluten free favorites (hats off to Risotteria in NY for their GF pizza...worth a trip!), and have added to my regular dinner at home catalogue. I have tried to convince my cousin's wife, who has been diagnosed with every malady under the sun, to go GF. She says she feels much better when she eats what I eat. She is just unwilling. Oh well. Anyway, thanks for your blog and this post in particular.

  13. Oh Carrie, what a wonderful post! I love how honest you've been in your writing lately (or maybe you've always been this way and I'm just paying more attention now?). Anyway, giving up gluten was always easy for me because the emotional consequences (depression) were so bad. But giving up all the other things I'm sensitive to (eggs, dairy, sugar, grains) has been much harder and I struggle with it every day. Like you, some days I decide it's just worth the headache. I don't know why. Food should never be worth feeling sick, but somedays I do it anyway. Thanks for sharing your story with all of us who struggle with this!

  14. I was pregnant when I was diagnosed with celiac. Imagine trying to go gluten-free while struggling with powerful cravings and terrible hunger. I cheated. A lot. That was three years ago and I hardly cheat. If I am starving and my blood sugar is low, I get terribly tempted to cheat if gluten is right in front of me. -Diana

  15. I went to London and Florence this summer after three months of being gluten-fee. We ate ate Gordon Ramsay's and Alain Ducasse's in London. I reasoned that these were once-in-a-lifetime meals, so ate a bit of gluten, after which nothing much happened.

    Armed with hubris, I decided to go a bit further in Florence. I ate an ENTIRE thin crust pizza one afternoon. Sooo not worth it. I hurt for days, even after my return.

    Lesson learned, and I have been 100% gluten-free since.

    It seems that with many people it takes an extravaganza (often a trip or special occasion) to really hammer it into their heads that they actually get SICK by eating these foods they love. And that - maybe - they don't really love these foods anymore, because, quite obviously, these foods don't love them.

  16. Great post, Carrie! I never felt an addiction to gluten like I have with sugar, but I know it can be very hard for some. For others it may not be the addiction as much as convenience. I enjoy baking gluten free breads and goodies, but I have often thought how difficult it would be if I didn't like to bake.

    My symptoms, especially in the early years, were enough to keep me from cheating. The mental effects such as extreme irritability were the worst, but I think that pales in comparison with the migraines you had to deal with. Maybe they were a blessing in disguise to get you to stick to the diet.

    Thanks for sharing so honestly. I'm sure it's a help to others.

  17. I just found your blog and this post was exactly what I needed to read. I've just recently discovered that my migraines are due to gluten. I'm so excited to go through your blog and read future posts.


  18. I'm struggling.

    It's even harder because I haven't been able to get to the doctor to get tested, so I am not 100% positive that it is gluten. All I know is that I couldn't keep any food down for the month of July, and once I cut gluten out, after about two weeks, I stopped being nearly as sick. When I've either accidentally or on purpose had gluten in the past two months, I've spent the next day losing everything I try to keep down.

    But last Thursday, I wanted sushi. And even though I knew a friend was sending me GF soy sauce packets this weekend, I wanted sushi NOW. So I did. And I spent Friday running to the bathroom to lose my lunch.

    This sucks. I want eel, and crab stick, and all the soy sauce I can eat.

  19. I just stumbled upon your blog and I will definitely be visiting again! I have been gluten free since 2008 being diagnosed as Celiac that September. I have not once purposely ingested gluten. I've thought about it, but then I think about how hard I work to keep myself from doing it and how much it would hurt me. The times that it has accidentally happened have been few but definitely not something I enjoy! Now I just wish that I could have the same willpower with losing weight!

  20. Love this post! What a struggle and addiction gluten can be. You are an inspiration to many!!!

  21. Carrie - I love, love, love the way you express yourself and your journey with food. I would love to put your blogs on my webpage for others to read. I have the same problems you have, you just put it beautifully on the page! I love this one and the most recent one you did on Paleo. My web site is

  22. I googled "I'm having trouble giving up gluten" and got to this. I have self diagnosed a gluten intolerance. Every time i eat it, I get gassy, get rashes above my eyes, have to go to the bathroom all the time. Its embarrassing, but I still cheat with fries, thinking the cross contamination wont hurt, or eating one cookie wont do anything. well one leads to another, and then I catch myself saying, well I already ruined my day and i'm going to feel it later.. might as well start this over tomorrow. I have not gotten sick enough or had side effects yet that would cause me not to cheat. In college, it hard to buy and create my own meals, i do my best to make sure im checking and not getting pasta or bread, but a cookie in my room, or brownie ice cream...I wish there was a secret to resisting it!
    -Having trouble

  23. I'm not a cheater with gluten, but definitely dairy. I had pizza last night, not home-made, but from the store and it had cheese on it and I felt the effects nearly immediately. I'm a dairy cheater...But no more!

  24. I tested negative for celiac and negative for any gluten allergy, though I still felt horrible after eating it! I finally a few weeks ago gave it up for good! I am still in the learning process and mistakingly at times slip because I wasn't paying attention. My family thinks I'm crazy, but why do I want to feel miserable on a daily basis when I don't have to be!

  25. wow i started to cry this is so inspiring! anyone gluten free can relate to so many aspects of your story. people who aren't gluten free really don't understand how much of a challenge it really is to stop eating a substance that is literally all around you at all times. i was told to go gluten free five years ago (by the 35th doctor in five years... hahah!). as hard as it was, it was easy to get rid of gluten completely because i knew i didn't ever want to feel the way i had felt for the five previous years before that ever again. there were many times i almost broke down and ate something horrible for me, but surrounded by great friends, they always watched out for me and my crazy stomach! after five years of being gluten free, i have my cheat days every now and then. a stomach ache, headache, moodswings and fogginess will always be worth it for the mom and pop pizza place in my home town!!!