For all you celiacs out there, have you ever gone through a long stretch where you feel totally fine? Totally fine as in normal. Healthy. Not sick. No brain fog. No stomach aches. No hourly trips to the library. You get the point. And then you find yourself wondering…
Do I still have celiac disease?
Well…I’m in one of those stretches right now. And physically it feels great. But believe it or not, it poses a mental challenge as my mind tends to play tricks with me.
“Maybe I’ve beaten the odds and I’ve healed completely.”
“Maybe I’ll be the first person in history to erase an autoimmune disease.”
“Maybe I can go back to a “normal” lifestyle.”
I know, I know. There is no cure for celiac disease and the only treatment is a life of pleasure-free gluten-free eating. Believe me, I know.
But as the weeks go on and I find myself without a hint of feeling ill, I seriously start to wonder.
But then reality slaps me in the face. “Snap out of it Dude. You’ve got celiac disease. Don’t you remember how miserable you were? How you never felt right.”
Boy, do I remember.
Actually, the last time I felt this good for this long was one year ago. And the celiac gods got even with me. I ended up getting glutened and spent six months in eternal hell.
Did I get lazy? Did I let my guard down a bit? Did feeling good cloud my judgement? I don’t know. Perhaps.
That’s why celiac can be such a maddening disease. When you’re in a good stretch, you can forget how bad it can be. And then one slip and BOOM!
So yes, you still have celiac disease.
Yes, you must be as diligent as you’ve always been.
And yes, you must remain gluten-free for the rest of your life.
Reality sucks sometimes, doesn’t it?
Yep, when I go on an eating out binge – let’s say over Christmas…it will get me every time to some extent. The brain fog for over a week is soo not worth it. Off to an unfamiliar Greek restaurant tonight with friends and I may just pre-eat and sit and chat.
Sux…doesn’t it? Good luck tonite!
The brain fog – why yes! The eating out – of course!
Luck Tonight – thank you! I pray now at restaurants. Wonder if we do a group prayer before the meal if that would help? I think they dance on the tables there…. Maybe I’ll do a Food Dance! 🙂
I think you’re supposed to step on a wine glass for good luck in Greek tradition. Perhaps you should bring your own though.
I think the best thing my doctor ever told me and my family was that you can NEVER outgrow Celiac Disease if you truly have it. I’ve met too many adults that were diagnosed as children and then told that they would outgrow Celiac. These people are very ill adults. You cannot outgrow Celiac. I think your body can heal itself and then you start to feel better. As someone with Celiac for 30 + years, I know how it feels to feel great but never did I even think I outgrew Celiac.
Perhaps it’s wishful thinking on the parent’s part, over-protective parenting or ill-advised doctors. Either way, the sooner somebody knows celiac is a life-sentence (for lack of a better term), the better off they are.
Historically, it seems like doctors thought Celiac was a childhood disease that could be outgrown.
My mom and I both have Celiac. She was diagnosed in her forties, I in my early twenties.
When my mom was first diagnosed, the Nurse at her work was in shock because she thought it was a childhood disease. (This is 10 years ago)
She went to specialist (recently)for a check up and he actually told her that the GF diet had “cured” her and that she was Celiac free. This is a huge problem in my view as it will confuse and mislead people into eating gluten again.
I really wish there was some sort of standard to bring Doctors up to speed on Celiac Disease and the Myths associated with it.
Really? A specialist told her that? I can’t believe it.
The information is out there if the “specialist” is not too lazy to educate himself on celiac disease.
That’s unbelievable.
It doesn’t surprise me at all. The unbelievably wrong information that I have heard from specialists and GPs alike is mindblowing. Several doctors have told me that I was too fat to have Celiac disease, that CD doesn’t cause constipation, that spelt is safe, that small amounts aren’t damaging… My kids’ pediatrician told me that kids outgrow it all the time. My uncle was told by his GI doc (and still believes) that he can eat gluten as long as he has no symptoms. When the symptoms reappear he should cut it out again for a while. *headdesk*
Your uncle’s GI should have his license revoked!
C’mon industry “specialists”…educate yourselves. We’re the patients. Your the doctors. We’re supposed to depend on you. At least, that’s how it’s supposed to work.
Yeah, my mom could hardly believe it as well. Thank goodness she knows better!
There is so much misinformation out there and not enough public awareness. These days it seems like everyone is talking about Gluten Free like its a marketing tool. Problem is, they are doing so without correct information. A national TV program here in Canada had a fitness “expert” tell viewers that Spelt and Kamut are gluten free. Outrageous!
I like to say I am my own best advocate.
let’s say I was diagnosed with what was called ‘Children’s Celiac’ waaayyy back in the 70’s. At that time, everyone thought there were two different types: the kind you outgrow and the kind you don’t. According to my mother, my brother and I both outgrew it by the age of 5.
My allergies have been progressively worse the last few years, but no wheat allergy comes up from the prick tests. HOWEVER, now I’m seeing that you can’t grow out of Celiac’s and I should eliminate gluten.
Thoughts? input? suggestions? I don’t want to get obsessed, but thought I would eliminate for say, a couple of weeks.