Going gluten-FREE: Do, or do not. There is no try.

When I was first diagnosed with celiac disease, the first person I got to meet face-to-face about it was an authoritative RN.  Prior to this, I had heard over the phone from my OB (I was pregnant at the time) that my blood tests said I had celiac, I had been hauled in to have my biopsy a couple of months later (after having my baby), and now was all prepared for the official “Yep, you have it.” moment.  It wasn’t a shock to me by this point, since I had known about it since that first phone call, and I had already decided to go GF and stick to it, not only for my health, but because it would make it easier on my daughter (also celiac) if she wasn’t the only one in our house who HAD to do this.

But back to the RN….she was not one of those soothing nurses that tells you everything is going to be okay…not at all like the nurses in the Children’s Hospital from when my daughter was diagnosed, nor like the ones in the delivery room from when I had my son.  No, this nurse was all business.  She told me that if I was getting diagnosed at 87 years of age, well, at that point I could do whatever I wanted, but that since I was young and had two kids relying on me, it would be incredibly selfish of me to keep eating gluten and risk having my children grow up without a mother.  I remember thinking, “Gee, Lady!  I already decided to go GF, and I’m not going to cheat, so dial it down a notch!”

See, the fact of the matter is that I was a hair’s breadth away from having lymphoma thanks to my non-symptomatic celiac disease.  That’s right:  I had none of the classic symptoms, and probably wouldn’t have found out until I had cancer except for the fact that my daughter got diagnosed, and her GI told us to get tested.  And as much as I like donuts, I happen to love living, so it was a pretty easy decision.

In the years since, I have thought back to that appointment with the bossy nurse.  At the time I wondered if such harsh demands weren’t a little extreme…I mean, who would cheat on this diet if they knew it could kill them???  Turns out, a lot of people.

And while I don’t care if you, as an adult, decide that that cookie or donut really IS more important that living to see your 50th birthday, I would appreciate it if you would just give up the pretense altogether of being gluten-free if you aren’t going to stick to it.  Really.  I don’t care what decisions you make if they only impact your life.  Go ahead and perform your own appendectomy if you want.

But please, PLEASE – if you AREN’T going to go gluten-free – REALLY gluten-FREE, then please, don’t even bother.  You know why?  Because all of a sudden, your decision to eat that donut is having an impact on MY LIFE, and I happen to have a problem with that.

See, when you go into that cafe and make a big production about getting a gluten-free sandwich and salad, and then go and order that double-chocolate fudge cookie as a treat because “you’ve been so good all week!”, you just educated that restaurant on how to handle gluten-free situations by telling them that it isn’t that big of a deal.

In this day and age, there is probably no one in this entire country who doesn’t know at least 5 people who are or have been on diets.  And most of those people cheat on their diets.  But being on a gluten-free diet isn’t like being on every other diet.  We can’t correct with insulin, we can’t jog an extra 30 minutes at the gym….. if we want to live a long, healthy life, it requires 100% strict adherence to being gluten-free.  It is called “gluten-free” for a reason, not a “gluten-reduced” diet.

More and more restaurants are trying to incorporate gluten-free meals into their menus, which is an effort that is appreciated by many celiacs.  When you go out into this world and order gluten-free food, please be mindful that you are an ambassador and educator to that establishment.  Whether you want to or not, you are speaking for all of us.  So please be mindful of the lessons you are teaching.

I might be the next person to eat there.  (or rather, after grilling them, I’ll be the next person sitting there eating nothing while my colleagues eat their lunch.)  But you know what?   I am a grown up, and I can ask questions and grill servers, as I have gotten used to doing anytime I want to eat a meal outside of my home.

So don’t do it for me.  Do it for the kids who have celiac disease.  Do it for kids like my daughter. They aren’t able to ask every server about meal prep, and while I wish I could be there to always do that for them, inevitably an aunt or uncle, grandpa or grandma will want to take them out somewhere as a special treat.  And not living with the disease, they won’t be familiar with all of the conversations you have to have to get a truly gluten-free meal.  I have to send my daughter out with the hope and a prayer that the restaurant really understands what it means to be gluten-free….

I have to hope that they take it more seriously than you do.

So, today you need to make a decision:  are you going to be gluten-free or not?  If you are, then DO IT.  I’m not saying it is easy, but I have noticed that us celiacs are a pretty tight bunch….there are support groups out there….if you really want to do it, you can!

But if you’re not going to stick with it, then don’t even bother pretending.  It isn’t cute, it isn’t okay, and it isn’t harmless.  When you decide to get serious about your disease, come back to the GF lifestyle…it will still be here, and it will be stronger for not having the mixed-messages pelted at it.

About AccidentalCeliac

I am an architect living in Minneapolis who was diagnosed with Celiac Disease. I also am a mother of two children, one of whom has Celiac Disease, as well. This blog is about all things related to navigating the many terrains of gluten-free living. I hope to share tips and experiences, post news and fun ideas, vent a little, and share anything else that has to do with this lifestyle that so many people are now living with.

13 responses to “Going gluten-FREE: Do, or do not. There is no try.”

  1. Eric says :

    I think part of the problem is that a lot of people who don’t have (or, maybe don’t know they have) Celiac Disease think that somehow “gluten-reduced” is generally “healthier” so they may go around saying “Oh yeah, I’m gluten free! Except for pizza on Sunday…” Chalk that up to our obsession with “health-diet” fads, I’m afraid.

    As we’ve learned this is really a 0 tolerance game for those diagnosed with the disease.

    (Which in itself is frustrating, because technically speaking 0% gluten forever is really an almost unobtainable goal, and I wish I could get more definitive answers on just how close to 0 is close enough. 0.0001%? 0.001%? We do have a loaf of wheat bread stashed away in a separate cupboard for my non-GF daughter, but a molecule or two almost surely finds it’s way to the other kid now and then, despite our best efforts)

    • AccidentalCeliac says :

      I concur. Gluten-free fad dieting is both a blessing and a curse – it is great because all of a sudden companies are investing in GF product due to such a fast increase in demand, but it is such a curse when it doesn’t get the serious attention in food prep and handling that it deserves.

      We have a GF house (with the exception of a single, plastic bin with clif-bar types of treats for my husband and a beer firdge.) It is hard to know that our daughter will, inevitably, encounter gluten everywhere else, but we just hope that what miniscule exposure she gets doesn’t do too much….and we take her food prep outside our home very seriously..which means we don’t go out much. (or it is to tried and true places that have demonstrated an understanding of the disease.)

      I just get angry when people who KNOW BETTER put others lives at risk because they want to cheat. It just seems so selfish.

      Thanks for your comment!! (& good luck!)

  2. marcia says :

    I exclaimed “OH WOW!” when I read your post. I have Celiac and was tested because my sister was diagnosed first.(summer 2009) Our mother passed away 22 years ago at 47 from stomach cancer which we’re now fairly certain was due to undiagnosed/untreated Celiac. My sister “tries” to be GF and we butt heads quite a bit over it. At Thanksgiving she actually said outloud “well if you have to die from something I guess mine will be gluten”. She’s experiencing symptoms but says she’s not. I’m going to see my sister tomorrow and I’ve printed out your article that I’m intending to give her. This isn’t some game we’re all playing here and I appreicate your candor to get people to wake up.

    • AccidentalCeliac says :

      Thanks for the comment – I hope you are able to get through to your sister. Some people just need a “AHA!” moment. Please share with her that I had ZERO symptoms, yet I almost had lymphoma. If she tested positive for celiac, then she has it. I hope she can find whatever means she needs to cope with that diagnosis….but I would bet dollars to donuts (haha) that coping with celiac disease is 100-times easier than coping with cancer. Good luck!!! I’d love to hear how it goes with her, so check back in sometime!

  3. Colleen Ann Guest says :

    THANK YOU for this!! I posted a link on my facebook page. It’s so hard to navigate the gluten/grain free waters already without people undoing everything I’m trying to do. I have a co-worker who says she’s gluten free, but she “cheats” all the time and wonders why she has skin/digestive/neurological symptoms. Everyone around me thinks I’m a whack job for being so militant about my food and preparation of it. It actually embarrasses my husband when we go out to eat because I have to ask so many questions and get the cook involved. Needless to say, I don’t eat out hardly ever! Again, thank you so much for putting a much different perspective on the situation! God Bless!

    • AccidentalCeliac says :

      You are most welcome! I commend you for sticking to your guns when co-workers and family act like you are just being picky. It is so hard to do this without some sort of support mechanism. I hope your husband learns that this isn’t that uncommon anymore….and that when you do that, you aren’t just doing it for yourself, but that you’re doing it for every celiac who comes to that restaurant after you. so, THANK YOU!!! 🙂 Keep up the good work and stay strong!

  4. Rachel says :

    Thank you so much for posting this! I don’t have Celiac’s, but I do have a strong gluten sensitivity such that when someone messes up my order I end up feeling like I have the flu and then breaking out in hives. My university dining hall was incredibly careful with me, and usually the restaurants I go to are careful, but sometimes my friends say, “well, I’m pretty sure it’s fine. It’s not like it’ll kill you, right?” No, it won’t, but I’ll feel the side effects for 3 days, and my body takes even longer to heal. So thank you, I’ll be posting this on my facebook so it gets spread around!

  5. Lorie says :

    Great article! I hadn’t thought of it that way exactly. I adhere to my gluten free diet because the repercussions are too severe if I don’t. However, I have recently discovered that I react to dairy and soy. I’m having a heck of a time giving up things containing those two things which probably makes me seem blase about them and not to be taken seriously. Feels like there isn’t much left I can eat. Some fruits and veggies are also out. Fortunately I don’t eat out much but I will pay more attention to my public face from here on out. I would hate to affect those who don’t have a choice when it comes to dairy and soy. I just really miss chocolate!!!

    • Colleen Ann Guest says :

      Lorie, I feel your pain!! I have a dairy and soy problem in addition to the gluten (including corn, rice, and all grains). I buy only grass fed animal products, pretty much stick to fresh and locally grown produce, and am very careful about how my food is prepared. However, instead of feeling limited, I feel liberated. My food choices are much simpler and I can focus on making yummy recipes using what I can eat rather than constantly wondering if what I’m eating will make me sick. Look up the SCD diet (specific carbohydrate diet) for help. It was designed to help people with inflammatory bowel diseases like crohns or ulcerative colitis, and for celiacs.

  6. Meg says :

    Thank you! My mother saw this article and sent it to me, saying that I could have written the same thing myself. I am 18 years old and it is absolutely infuriating to be around peers who would rather just “eat the pizza and deal with the stomach ache later,” then their friends think I’m the crazy one. I also have doctors lecture me about the importance of the diet, not believing me when I assure them that I would never ever even consider cheating on my diet.

    • AccidentalCeliac says :

      It is so very frustrating… sometimes it makes it more exasperating, because I feel like, of all people, THEY should know better! So glad this resonated with you! Feel free to share it and pass it along!

  7. AccidentalCeliac says :

    Reblogged this on accidentalceliac and commented:

    I got a lot of great feedback about this post, and it seems especially timely, so I am re-posting it.

  8. Jennie M. says :

    Wow! Thanks so much, I just got tested and came back positive for celiac… My daughter was diagnosed last March and the Gi specialist of course recommended that we all get tested. I’m glad I did and even more glad that I found your website…. I have not had any symptoms of celiac, but after reading this you have helped make my decision to go gluten free a much easier one.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: