Yes. I did, in fact, start this post with a sigh.
As many of us know, celiac disease is quite under-diagnosed. Yet in the short years that have followed my diagnosis, I have seen it grow from complete obscurity to almost mainstream in terms of members of the general public having actually heard of the word “celiac”. (not that they really understand what it is, but at least they have heard of it.)
Most recently, I have even found myself in various non-celiac-related situations (at work, neighborhood functions, etc…) where I have met new fellow celiacs! I can only describe the feeling by saying it is like traveling abroad and finding someone from an entirely different state that happens to be in the same place you are. Sure, back in the US you really don’t have much in common, but across the ocean? Well, you might as well be long-lost first cousins.
I digress…. so, in the midst of this expansion of my celiac-circle-social-group, I have come to the startling (and disappointing) conclusion that MANY of us (“us” meaning CELIACS) are really slacking off. Seriously.
And I am frustrated and dumbfounded as to why this is.
If any of you have read any of my prior posts, you know that I can be irked with other people who lack an understanding as to the lifestyle celiacs have to lead. But as irritated as I can be about it, the truth is that they are usually just plain ignorant about it. They just don’t “get” it, because they don’t know anything about it.
But us? Us Celiacs? There is no excuse!
In the past month, I have heard the following (paraphrased.):
“I usually can eat one slice of bread without getting gluten’d.”
“The banana pudding is sooo good, you just have to scrape the cookie crumbs off the top.”
“Yeah, I don’t really worry too much about cross contamination.”
Seriously? I would ask if we all had woken up and taken stupid pills, but it would be an obvious “no”, since there is no way to mistake celiac pills for stupid pills since CELIAC PILLS DO NOT EXIST!
Q: You know what treatment for celiac disease DOES exist? What the ONLY treatment for celiac disease is (to date)?
A: Strict adherence to a gluten free diet – with cross contamination of less than 20ppm.
WE should know this. (and yes, I am yelling here…the caps lock is not on accidentally.)
Now, when I raise this concern (albeit, in a much calmer way), the answer I get without fail is something to the effect of, “I don’t get sick from only eating (fill in the blank with some amount of food containing gluten.)” And on one hand, I get it….people with mild allergies will often introduce those same allergens into their lives as long as the results are bearable, so I can see where a celiac who usually pukes for 2 days might contemplate that only getting sick for 15 minutes is a good threshold….until I remember that all of these people were diagnosed by doctors…who should have told them that this was not a safe practice.
See, the thing that they are forgetting is that the “sick” part of celiac disease is just a symptom. It is just a SIGN that internal damage has been done to your body. Take this for an example: Someone stabs you with a knife…you are bleeding out of a hole in your chest cavity. Your shirt just got wrecked. Man…that bleeding sure is a messy symptom. So then someone stitches that gash up, so the bleeding stops, and you can put on a new shirt. Does that mean that is was okay to be stabbed? I mean it was just once, right? But just because you have stitches on your skin, it doesn’t mean you aren’t bleeding internally…you just can’t see it anymore. (and no doubt if it keeps up, you won’t be seeing much of anything anymore.) See? That messy symptom was just a red flag (no pun intended) telling you about worse problems that you can’t see.
I am particularly confused by this laissez faire attitude, since I am asymptomatic. That’s right: I could eat gluten by the boat load and not feel it. No puking from this celiac, no siree! So, if I had the same benchmark, my gluten free diet would have lasted all of 1 day. Yet here I am, more than 3 years later, and I have never cheated on the diet. (and believe me, gluten and I were VERY close friends before all of this….)
Listen: I know it is hard. Being gluten free is so very difficult. You are reminded at least 3 times a day (everyday) how much it sucks, and how different you are than everyone else around you. I get that. I’ve been there. I know how intoxicating even the smell of bread is….. but if it starts to feel as though it is just too hard, or too much work, or too expensive, or too alienating, or too whatever, please take a moment. Remember the people and pets and experiences in life that you want to be around to enjoy. Remember the reason you decided to go gluten free after your celiac diagnosis in the first place. Heck, remember the chocolate-covered, Kinnikinnick, gluten free donuts… Just find a way to distract yourself from taking that “easy” route, because in reality, it isn’t easier, cheaper, less work, or more fun. In reality, it will dramatically reduce your life-span, make you more prone to certain cancers and diseases, and wreak havoc on your wallet for doctor and dentist bills in the long run.
I can’t really say that I care at all if you puke, or get gassy, or get migraines or whatever (although you have my sympathy)…. all of that stuff is temporary. I am writing this because I care about your LIFE. So remember: by eating gluten free, you aren’t just taking care of the symptoms…you are trying to take care of the cause.