Archive | March 2012

Feeling down about being gluten free? Sometimes you’ve got to flip the glass over.

If you’ve been gluten-free for a while, you know that it is really easy to focus on the negative aspects of the diet.  Specifically if you have celiac disease (or some other need for strict avoidance of any cross contamination), the world is filled with reminders of all of the things you can’t have or can’t do anymore.

Who among us hasn’t found themselves on the verge of tears while wandering through the grocery store?  I’ve been there.  Heck, I’ve been beyond “the verge” and found myself trying to wipe the tears off of my face before strangers start to try to console me.  (Luckily, I have only been on the receiving end of some odd stares.)

At times, the glass seems perpetually half-empty…

When I was first coming to grips with this, I did all the pep-talk stuff to try and take myself out of this slump.  I bought a bunch of GF junk food to make up for the lack of Oreo Double-Stuf cookies, I told myself that I would be healthier now that I wasn’t going to be eating as much processed fast-food crap, I cajoled myself into numbing my emotions because I had to be strong for my daughter (who is also GF).  And while much of that helped in the short term, the only thing that I can consistently go back to when I start feeling low is a complete change in perspective on how I look at a GF diet.

Here is how the narrative goes for me:

When I was diagnosed, I was a smidge away from having lymphoma from celiac disease.  For those who live under a rock, lymphoma is a type of cancer (and one which celiacs are prone to getting at a higher rate than non-celiacs).  That’s right:  the big C-word.  And let’s face it:  cancer sucks.  It kills people.  It can kill them fast, or kill them slow; but I don’t know anyone who has told me that it killed painlessly.  Because it isn’t painless.  And neither are the treatments.

So, I think of the people I know who have battled (or who are battling) cancer.

And then I think of how GRATEFUL they would be if only their cancer could be cured by simply avoiding a certain protein found in certain foods.  Think of how the medical world would be in awe of such a discovery.  A cure for all of that suffering and death being as SIMPLE as not eating gluten…. We would all be joyously amazed!!!

And suddenly it does seem more simple.  And easy.  Because while avoiding gluten doesn’t cure cancer, for me, it sure as heck can prevent it (and a host of other issues).  And if I ever got cancer, you’d better believe that I’d be praying for a cure, no matter how complicated…and that I’d be so relieved if it were something I could do by simply switching my diet.

While Glutino sandwich cookies are great, home-made food is better for my health, and my daughter has it easier knowing that we are in this together, the thing that keeps me strong is the thought that everything is relative.  While being gluten free may be tough from where I am, if I look at it from a little farther down the scale, it looks amazingly easy.

So, when you feel down about being gluten-free, and that glass looks like it will always be half-empty, do yourself a favor.  Flip that glass over.  Because sometimes you need to see it empty in order to be reminded that perhaps it was half-full in the first place after all.


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.