Ok…now that I got that out of the way, let me explain. Celiac disease sucks. I know that. You know that. Not only does it suck, but there is so much bad info out there about our disease, that for the newly diagnosed, it becomes a minefield of fear. (And for those wondering what the heck Terminus has to do with this post, they made their decision partly based on fear. Never a good idea. Especially for Bob.)
Anyway, here’s an email I received that talks about living in fear with celiac disease. I’m embarrassed to say that I received this email in April of 2014. Yes…2014. That proves three things:
- Poor man wanna be rich.
- Rich man wanna be king.
- King ain’t satisfied til he rules everything.
Wait…that’s not what it proves. Those are lyrics to Badlands. Sorry. Here’s what it proves:
- I really do read all of your emails and save the ones that I want to respond to.
- My life is out of control crazy busy and I seriously need to find more free time.
- I’m totally lame.
On to the email:
I only just recently (like, yesterday) discovered your blog while looking for answers.Short background: I’m 51. I was diagnosed with celiac disease on 10/11/12. My diagnosis was a fluke; the G.I. I saw ordered an endoscopy looking for gastritis and discovered celiac instead. He knew next to nothing about the disease…he called it a gluten allergy with no cure and the only treatment was a gluten-free diet for the rest of my life. But he said I could occasionally cheat, gave me a few pamphlets and sent me on my way. It took 30 seconds on Google when I got home to discover that what I had was far more serious than simply an allergy, and that it was NOT ok to cheat. I was sick, scared to death by what I read and overwhelmed by conflicting information.
I joined a couple of online celiac support forums and posted some questions but quickly backed away because the only responses I seemed to get were from fear mongers who took great delight in posting links to articles linking celiac to long-term complications and cancer. Nothing I found offered any hope, nor could I find anything online posted by upbeat celiacs with a positive attitude about their disease. I struck out on my own, learning how to read labels, calling companies about the gluten-free status of their products, and slowly educating myself and my family about the disease and living gluten-free.
I was very fortunate to have responded to the gluten-free diet quickly…within 6 months all my symptoms resolved themselves and within 9 months I gained back all the weight I lost, and then some, thanks to discovering Trader Joe’s gluten-free cupcakes. I have never cheated and take all my supplements, including a probiotic, every day. I feel well and back to working out regularly and feeling more “myself” again.
But I’m still occasionally haunted by many of the things I read during my research immediately post-diagnosis. Things like being at increased risk of developing long-term complications, heart/thyroid issues or other autoimmune diseases (two first cousins on my father’s side have MS so it’s a legitimate concern). I’m not as worried about cancer after reading a legit article online that the vast majority of celiacs do not develop it. No one has ever explained to my satisfaction if those risks apply only to undiagnosed, untreated celiac. Should I still be concerned, especially if I’ve never cheated since going gluten-free (occasional accidental exposure notwithstanding), have responded well to treatment, am asymptomatic and all medical tests to date show everything’s fine? Even my monocyte levels were normal at my last blood test. They were through the roof at time of diagnosis.
My biggest fear is having a shortened life span due to the disease, and the conflicting information I read online does nothing to allay those fears. I suspect my mother has undiagnosed celiac based on her medical history. Yet she’s 87 and still relatively healthy. My nutritionist also reassured me that based on my genetics (my father is also still alive and healthy at age 93), and as long as I continue to live a healthy lifestyle and don’t cheat there’s no reason I can’t live a good, long life despite the celiac. But I’m still haunted by that fear and it’s the one thing holding me back from enjoying life.
I love your blog. I love your supportive community of readers. I intend to keep coming back every day. It’s a good thing I’m self-employed; I probably would have been fired by now as I’ve just clocked three hours of reading and posting today.
Keep spreading the word and offering support and hope!
First off…wow, your doctor sucks. He called it an allergy and said you can cheat? No words. None at all.
For the newly diagnosed, here is my advice:
Live your life. Do not let celiac hold you back. It’s a bump in the road, but it’s a bump that is manageable. I promise. Yes, you’ve got some serious adjustments to make. Yes, your body will take some time to heal. Yes, you will lose a little bit of freedom and spontaneity in your life.
But you know what? You’re getting your health back and that’s what matters.
Will celiac kill you early? I don’t know. But if you knew it did, would you live your life any differently?
There is an unbelievable amount of fear-mongering online. “You can’t have this” and “you should stay away from that”. Some of it is accurate. Some of it is complete BS. Just stick with the facts.
Do not live your life afraid to do things simply because of GLUTEN. No matter what people say, it’s NOT everywhere and you CAN lead a normal life (with a few adjustments). Take precautions. Educate yourself. Use common sense. And if in doubt, do without.
And if you have any questions about something, just ping me. I’ll set you straight.
It just may take a year :)