Cheater, Cheater, Gluten Eater

I was diagnosed with celiac disease in April of 2005. I tried as hard as I could to be gluten-free, but always foundan excuse to cheat. I would go off, I would go back on. I have atypical symptoms (meaning none of the obvious gastrointestinal ones), so I figured since gluten didn’t really make me feel sick, it was okay to have some every once in a while.

No time of the year was easier to cheat than around the holidays. I wanted to relive all of the memories of my youth that are associated with food. I certainly didn’t want to be an inconvenience to my family. But what started as a little holiday cheating turned into almost full time cheating whenever life would get stressful.

Then in the fall of 2008, I had a massive outbreak of dermatitis herpetiformis, a hideous skin rash associated with celiac disease. In December of that same year, my oldest son was diagnosed with celiac as well, and it was at that point that I knew something had to change.

I’ve often had people ask me how I learned to stop cheating on the gluten-free diet and embrace the lifestyle rather than fight it. Here’s what I tell them.

Let me begin by telling you a (not entirely fictional) story: Imagine that you went to see your doctor one day after a series of tests. You have been very concerned about the way you feel and have been feeling a multitude of symptoms that make you extremely uncomfortable. You are praying for a clear diagnosis that will help you begin to feel better. As you sit in the exam room waiting for your doctor to arrive, random thoughts about your health begin to swirl through your head. You begin to think about a close relative who recently died of {insert disease here}. You start to wonder if the article you read on WebMD about {insert disease here} might be what you have, and that terrifies you.

When you hear the door open, your heart jumps, the adrenaline surges, and the tears begin to swell in anticipation of the worst. Is it bad news? Is it good news? Am I crazy? Am I sick?

And then your doctor begins to share the test results with you. He tells you that you have a specific condition that is treatable with almost a 100% success rate. You are relieved and intrigued. He tells you that many of your symptoms will disappear over time if you follow the treatment regimen. He says that many of the complications of your condition that could develop over time can be halted and perhaps reversed if you will simply follow his recommendations. You are told that there is a substantial amount of scientific and clinical evidence to support the success of this particular treatment, and that you shouldn’t worry about your long term health if you will adopt this simple solution. Talk about dodging a bullet! You are not crazy. There is something wrong with you, but thank God there is a solution!

You begin the treatment, fully knowing that this is the only way that you can heal and greatly reduce your odds of developing additional serious complications later in life. You begin to feel better, have more energy, your symptoms subside. You begin to feel as though you have your life back again! You feel better than you did 10 years ago…what a miracle! Your family and friends notice a difference. Your mood improves and with that so do your relationships and your outlook on life. You feel optimistic and confident again…everything your doctor told you was true!

And then you decide that you will stop the treatment and voluntarily go back to feeling miserable, irritable, and unhealthy. Most people would think you had gone absolutely insane, but not certain people in your life…they are, in some ways, relieved. You tell them that they don’t understand how hard the treatment is, that regardless of how you are improving, it is just too much. Instead of those same people trying to encourage you to get back on your treatment, they tell you it’s okay for you to stop because the treatment was pretty expensive and way too inconvenient. I mean, after all, they love you and hate to see you struggle. (The reality is, a celiac or non-celiac gluten sensitivity diagnosis is not just the patient’s diagnosis. In more ways than one, it is a diagnosis for the entire family. Everything changes and everyone has to come to terms with it in their own way, which doesn’t exactly hurry up the stages of the grief process).

This is the paradox faced by many people when they are first told that gluten is making them very sick. All of the science is there. The clinical results are there. There are numerous studies that support your lifestyle change. And while no one would begrudge you the hardship of enduring chemotherapy or major surgery or changing your diet because of a heart condition, for some reason people simply cannot wrap their brains around the concept of gluten-free, all the time, no exceptions. All things in moderation, right?

Moderation…that ugly little word. Let’s face it. You could probably have a glass of wine every day of your entire life and never develop cirrhosis. You could probably have a cigar every Saturday at poker night and never develop mouth cancer. To be honest, you could probably even have a cigarette every day of your life and never develop lung cancer.(I know a few smokers who cling to the fact that a substantial minority of life long smokers never develop lung cancer… they cling to it to justify their addiction). Gravy, fat, sugar… all things in moderation. Wasn’t this the wisdom passed on to us by our greatest philosophers?

But here is the thing. You cannot drink a glass of motor oil every once in a while without doing serious damage to your body. You cannot eat a bowl of rat poison a couple of times each year without causing some very serious problems. There is no such concept as “a little bit of mercury is okay.” You WILL do damage to your body, it WILL cascade throughout all of your internal systems, and you WILL die before your time. Inescapable, unavoidable, absolutely proven fact.

So pop me a quart of Pennzoil, will ya?

This is what gluten does to your body in a roundabout way. This is what YOU are doing to your body when you cheat. And we all know what we are doing to our bodies when we eat it, but we eat it (or shall I say ate it) anyway. WHY?

That is really the $64,000 question, and it is the very first question you must ask yourself (and answer) if you are
still cheating.

Why? Why? Why?

Why are you still cheating? With the multitude of gluten-free options out there, why are you cheating? With the incredible gluten-free blogosphere, the tips, the support, the recipes…why are you still cheating? You must answer that question first if you are to have any hope of overcoming.

You ask how I finally stopped cheating and embraced my new lifestyle?

My therapist asked me one not-so-simple question. “Heidi, what hole are you trying to fill (by continuing to eat gluten)?”

It took me three years to figure out why I was cheating and come to terms with it. It was only when I could honestly answer the question of “why” that I finally began to turn a corner.

Being gluten-free is not easy, to say the least. But lots of people are vegan without any problem. Lots of people give up cigarettes or alcohol every day. What is it about going gluten-free that is so damn hard?

Answer: it’s everywhere.

And not just at restaurants and potlucks and school cafeterias. It’s not just in innocent invitations to lunch or grabbing a beer after work. It’s not just in the business traveler’s trip to a conference at a hotel that might not be accommodating.
No…gluten is not just in your present physical environment. Gluten is firmly embedded in your soul, your memories, and your connections to the past that you had hoped to connect to your future.

Gluten is the smell of Grandma’s bread, Mom’s pie, and those rolls in a tube that you have every Thanksgiving. Gluten is the tradition of hot dogs at a ball game, funnel cakes at the state fair, pizza and a beer for the Super Bowl. Gluten is not just a highly addictive grain that civilization has cultivated and consumed for thousands of years. It is not “just one” of many foods. It’s not about the food, never has been, and never will be. There are plenty of other foods to eat. That’s not the point.

Gluten is part of your soul. Every time you smell fried chicken or baked bread, every time you find yourself at an event with gluten as an ingredient in a traditional meal, every time you have to decline an invitation or move heaven and earth to participate, you are giving up part of your soul. You are reminded that not only is the current world not designed for you, but that so much of your fondly remembered past was not designed for you either. And then you become overwhelmed considering a future as an alien, a stranger in the world without anchor or reprieve…

…and so you cheat.

You cheat because you desperately want it not to be so.

You cheat because you lack a blatantly clear diagnosis from an MD.

You cheat because gluten doesn’t make you feel sick to your stomach (in fact, you actually crave it).

You cheat because you are angry that you have been diagnosed with yet another bizarre health condition.

You cheat because on some convoluted level, you loathe the body that can’t seem to keep up with your heart, mind, and soul. So you unconsciously punish it.

You cheat because as a mother/ daughter/wife you have been subtly trained not to be an inconvenience, to endure and persevere, to solve the problem quietly and at great sacrifice for the benefit of others.

You cheat because gluten-filled food is the only connection you have ever had with your mother and to lose gluten
would mean losing the chance of a relationship that you have been fighting for your entire life.

And the most basic truth that you must acknowledge in all of this is that you do not cheat because the basic sustaining function of food is inconvenient… there is plenty to eat. You will never want for calories or sustenance. It’s not the “how”…it’s the “why.”

You understand why others “don’t understand,” even though in a secret place you yearn for them to finally “get it.” Your heart becomes heavy when you have to watch your loved ones continue on in family traditions without you by their side. You begin to feel as though your mother has chosen food over you. You start to confuse genuine looks of sympathy and concern from other people as subtle hints that“ there is something wrong with you, that “how dare you burden your family with this disease”…as though you had any control over it. And you want it all to PLEASE JUST GO AWAY!

But it won’t go away, ever. Never ever.

If the past is a large enough problem to overcome, contemplating your future in light of your PRESENT is unthinkable. Because then you start to dwell on (even if subconsciously) what you are giving up in exchange for your health.

How many times will you have to decline invitations to lunch before people stop asking you? How many phone calls will you have to make to other mothers to make arrangements for your child to bring their own food to a birthday party before you stop being invited? How much guilt will you be able to bear for the sake of OTHER PEOPLE’S expectations? Will you be able to survive in the dark corner of despair, because I know that is where you have gone or are afraid to go. I’ve been there and it is ugly. Very, very ugly. You feel alone, cold, shunned by those closest to you, and very afraid. That is the key word: afraid. You are afraid of letting someone down. You are afraid of being alone. You are afraid that this will all drive you completely insane (and I do not use that word lightly). Your fear is what controls you, contains you, and silences your inner voice.

To overcome this powerful force is to literally have to reinvent yourself, a daunting task at any age. But it is possible; I am living proof of that. The power is with you. While I know you don’t believe that at this particular moment, it is the truth. You cannot expect other people to alter their expectations of you until you alter your expectations of them. You must LEARN THE POWER OF NO! If you continue to cheat, they will continue to expect that of you. If you decline time and again to “go along to get along,” then you will find the people who truly want to understand and adapt, and those who are unwilling to bend. And if you really think about it, if those people who are unwilling to bend to your scientifically irrefutable dietary needs can’t be a little understanding, where will they be when something “really important” comes down the line? They will never “turn the corner” with you. It’s not about the diet or the gluten. They would have vanished at the first sign of trouble, regardless of what it was.

You have to understand, in your heart and mind and soul, that NO ONE else is going to turn the corner for you until you turn the corner for yourself. And it never has been or ever will be about the food itself. All food is just proteins and amino acids and blah blah blah…it’s not about the food! You are your own best advocate, but you are not doing yourself any favors by cheating. You are perpetuating your own failure and teaching others to expect this failure of you.

Stop failing, start succeeding…begin tomorrow by saying NO!

(And yes, it was the best decision I ever made).

Written by Heidi Kelly.