Things are going well. Rotation of celiac safe meals and restaurants are standard in the house. Grocery shopping is easy because you can real labels like a champ. Symptoms are under control. Then the doubt seems in – is the diagnosis correct? Do I really have celiac? Could they have gotten it wrong?
This is normal
First, know that questioning is normal. Even if every blood tests and the biopsy were definitive at the time of diagnosis, it is normal to question this diagnosis. I did it.
Periodically, I get to a place where my symptoms are under control and life is good. I’ve got energy, not much digestive distress, and am sleeping like a baby. Then the doubt starts to creep in.
Even though I have several biopsies and lots of blood work that all confirm my diagnosis, the doubt creeps in. I think I’ll be okay with a pinch of biscuit or a crumb of the Publix fried chicken crust. For a while, it is okay. I can get away with that once or maybe even twice. But then I push it one step too far and everything goes to heck in a handbasket.
I’ve been in this place a couple of times. Each time I push the envelope, the envelope pushes back and I end up really, really sick.
Why do I ever doubt it?
I doubt it because I think this disease can wax and wane a bit. Note there is no scientific proof to back this up. I am just talking out loud and thinking.
I think there are times when we are stronger and times when we are weaker. Our bodies flex and change over time.
We also know when we take more chances versus when we are more strict with our diets. Or maybe when we’ve been attending too many parties, exercising too hard, not getting enough rest, or any other variety of things that can stress the body. All of these things affect our overall health. Just like when we eat right, exercise the right amount, and get enough rest, we might be able to tolerate a bit more.
I know that right now, I’m feeling strong and healthy. My diet has been really clean. I’ve been getting plenty of exercise and outdoor time. I could use a little more rest, but that will just take some time. I feel like my celiac is under control and I believe
The point to this article is that everyone questions their diagnosis at some point. Even if they’ve had all the tests and every single piece of diagnostic information points to conclusive diagnosis, there is still doubt. So, my point is know that you are not alone.