I was diagnosed with celiac disease 8 years ago this week. Happy Celianniversary to me. Happy Gluten Freenaversary to me. Happy 8 Years Later and I Still Hate Itaversary to me. Thanks.
Do you know one of the main reasons I started this blog four years into my celiac journey?
Because almost everyone said it would be easy. And it’s not.
Because almost everyone said I’d feel better right away eating gluten-free. And I didn’t.
Because celiac is such a puzzle to solve. And I didn’t have all of the pieces. And fact is…I still don’t. But I’m in such a better place than I was four years ago.
It’s rare that I write a blog post two days in a row (I’m very aware of Dude Fatique). And it’s more rare when I receive an email from a newly diagnosed celiac that is in such anguish, that I’m drawn to respond right away. But the email I just received calls for such an occasion (damn…I misspell “occasion” every single time. Thank you auto-correct!)
Here’s the email I just got…
I was diagnosed with Celiac Disease about a week and a half ago and it has been a long journey to stay the least. I am now 36 and my problems started when I was 19 years old. I have had numerous blood tests, colonoscopy and an endoscopy coming up soon. I have been told, throughout the years, that my blood work is negative and at other times borderline for Celiac Disease. Well…the last results were positive. I’m a mess and I’m actually crying while typing this email as I sit in my cubicle at work.
I’m beyond tired of feeling like my insides are constantly rebelling against me. I cannot take it anymore…no one should have to live like this. I have tried a gluten free diet in the past, but I still have had terrible sickness. I know now that I have no choice but to stay on a gluten free diet for the rest of my life, so the day I got the call that I had a positive result, I started it up again.
At first I felt a significant amount of relief, but for the last 3 days I have felt terrible. I feel like when I eat gluten I am a sick, but I also am sick on a gluten free diet. I’m totally at the end of my rope and tempted to give up on food completely. I just don’t understand what I’m doing wrong.
I know that there are people out there that have it much worse, but I guess I’m just feeling like I’m at a crossroads with food. Damned if I do…damned if I don’t. I’m really not looking for a reply…I just needed to vent this out. Besides, I think this email is bit of a crazy rant and I apologize for any grammatical errors…not in a good way at the moment.
Thanks for listening.
There is no need to starve…I assure you. First things first, do not go gluten-free until AFTER your endoscopy. Otherwise, it may not be accurate. So try to get that done asap.
My first big piece of advice: Be patient. It can take the body months/years to heal completely. It’s not going to happen overnight. I know that sucks because you’ve been feeling awful for so long. Stay the course.
Here is the one thing I wish people told me upon my diagnosis: Going gluten-free is just one part of the puzzle. Yes, it hopefully allows your body to begin to heal. Yes, it is the ONLY treatment for our disease. And yes, it is indeed step one in your recovery.
But did you know that four years into my gluten-free diet, I still felt like crap. Or as Mrs. Dude always accurately said…”YOU NEVER FEEL WELL!”. As always, she was right.
So the question is…why didn’t I feel well? I was doing what the doctors said. I was doing what many in the community said. And yet, I felt just as bad as the day I was diagnosed (even though my body was indeed healing…as I put on the 15 pounds that I lost the year before my diagnosis.)
So what did I do to begin my new journey? I stopped eating gluten-free. Meaning I stopped buying replacement foods and started eating food food. Yes, I said food twice. There is such a fear for the newly diagnosed of giving up all of the things they once loved. So the initial instinct, as it was for me, was to head straight to the gluten-free aisle in the store and buy…crap.
“I can’t give up pizza!” Phew…I can buy gluten-free pizza.
“I can’t give up pasta!” Phew…I can buy gluten-free pasta.
“I can’t give up cookies!” Phew…I can buy gluten-free cookies.
Don’t get me wrong. Eating crap once in awhile is fun. But not while your body is still damaged from years of celiac disease.
I’ve written extensively about this on my Stop Eating Gluten Free Foods blog post. The post has received 448 comments to date. Most of them positive. It’s not easy to hear, but I believe it’s important.
So please do yourself a big favor and please read this blog post. It was the beginning of my healing, both physically and mentally. And for the record, since then I have also given up dairy 100% and corn and soy about 95%. It’s helped tremdously.
There is no “one size fits all” for celiac disease. Your disease is not my disease. It all affects us differently and we all must find out what works for us.
Celiac disease is a true puzzle and it can take years to get all of the pieces to fit together. Be patient. And then be more patient. And in the meantime, don’t be too hard on yourself and by all means don’t give up. You’ll get there.