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What to Expect After Your Celiac Diagnosis

What to Expect After Your Celiac Diagnosis

There is a real misnomer out there that after your celiac diagnosis, once you go gluten-free, you’ll feel great. You’ll notice the difference right away. You’ll be back to your old self before you know it.

Ummmm…no, not necessarily.

When I was first diagnosed, I read the celiac blogs and I purchased the books. And to a tee, they all said the same thing: you’ll feel better immediately. So went gluten-free on day 1. And I waited. And waited. And waited.

For years.

And no, that is no exaggeration. I wasn’t sick as a dog every day for years, but I was certainly not healed. What was I doing wrong? Stay tuned for the answer. But first, let me share an email I just received from a frustrated, newly diagnosed celiac.

I need to write/talk to someone and I don’t know who to talk to. I like your posts and the fact that you don’t pretend it’s just a great new world being celiac with new and interesting treats.

I was diagnosed by a blood test in Feb, went off gluten as no one told me not to (no one told me anything at all) then got the GI appt; so back on gluten for 3 weeks in order to have endoscopy April 6th and confirmed celiac and tested for anything else (bowel cancer, etc. – did not find). I have had no follow up or appt with dietitian (though was told one would call).

I am in daily pain, still have abnormal bowel movements (the one thing my Dr did say was “well all celiacs have IBS”) but the worst thing is the anxiety. And fatigue as it is exhausting to have to talk yourself thru every minute of every day. I don’t see a lot on blogs/sites about anxiety and depression as related to celiac disease.

Do you know if it will improve on the gf diet? Or anything else that might help. I am sorry to bother you but you seem to know a lot and are connected to a lot of people.

Thank you for listening.

First off…I’m sorry you had such a shitty doctor. Unreal. And sadly not surprising.

While I can’t guarantee anything, I can confidently say that YES, things will improve on a gluten-free diet. But you need three things to help you get there:

  1. Patience. Lots and lots of it. Depending on how much damage celiac caused to your insides, they won’t heal right away.
  2. Discipline. You are never eating gluten again. Period. Once you can accept that, the quicker you can move forward. One crumb can set you back. Don’t do it.
  3. Good eating habits. For the first few months, STAY AWAY FROM THE GLUTEN-FREE AISLES IN YOUR STORE. I so wish someone told this to me. I did what everyone does after diagnosis; I went out and bought gluten-free cookies, pizzas, bagels, etc. Wrong, wrong, wrong. The processed crap will kill you and will simply not allow you to heal. Once you start to feel better, you can slowly bring them in…but keep it sparingly…a lot of it is so bad for you.

And one more piece of wisdom: you may have other food intolerances. It wasn’t until I gave up dairy (and most corn and soy) that I began to heal. Oh…and I have a whole section on this just site just for celiac newbies. Read at your leisure.

So there you have it my fellow celiac. Stay the course. Treat yourself well. Email me when you’re struggling. And sooner than later, you’ll be back on your gluten-free feet. Promise.

It just takes TIME.

Aint’ that right Pink?

#NoCureNoChoice

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