I’ve been sick, really sick, for months.
It started with complete appetite loss in mid-April. Like flicking a switch, my appetite just shut off. Later came the stomachaches, nausea, bloating, extreme fatigue (really weird for a normally high-energy person like me), weakness, lack of motivation to do anything, brain fuzziness, and irritability. = Extreme sadness and extreme extreme extreme frustration, also.
When the symptoms were only worsening near June, I made an appointment with a gastro specialist. I was afraid I had celiac disease, as 10-20% type one diabetics do, and I matched many of the symptoms. I had a blood test done, waited a week. Negative. Had an endoscopy the next week, and that, too, was negative for Celiac and/or anything else. I was very relieved it wasn’t Celiac, but throughout all the waiting and tests and more waiting, I was still suffering all of those symptoms every day and I just wanted a goddamn answer. I just wanted a pinpointed diagnosis. I’ve spent so much of this summer lying in my bed, too tired or sad or sick to do anything. I just wanted an explanation. So next, I had a gastric emptying test done to make sure I was digesting food at a healthy pace. This is literally one of the weirdest things I’ve ever had to do:
- Eat a radioactive egg sandwich (no, really)
- Lay under a machine for 2 hours to track radioactive lunch being digested
When the results came in, everything checked out. Again, I felt relieved, but empty handed, still aching. (Not to mention now sifting anxiously through a growing pile of medical bills.) So I backtracked. I thought maybe something outside of my stomach was causing my problems. I went back to a general doctor and got a Complete Blood Count. Everything looked good…. except my blood sugar at that precise moment (whoopsie). I had tests for pancreas function, thyroid function, liver function: check, check, check.
I told the doctor how frustrated I was, how something is fucked up, and I was thinking maybe I had an intolerance to something, like gluten or dairy, because what else is left? And you know what she said to me? Experiment. Only you know how you feel. A patient knows their body far better than a doctor does.
So, I’m experimenting. One week ago, I cut gluten out of my diet. (What a weird word, by the way, gluten.) It’s been easy(ish) because weirdly enough, when I lost my appetite in April, I especially lost all desire for bread-y things. (It’s the secretly hidden gluten-y things that are tough.)
And I’ve felt so much better ever since. It makes me happy and sad, but mostly relieved. It’s actually hard to believe how much better I feel. I was sick for so long, it was wearing me so thin. I was breaking down. I was so worried. And now, what, it’s over, as long as I don’t eat gluten? I guess we’ll see. My friends feel bad for me, saying things like I can’t believe you can’t eat gluuuuuten! What about beer?! What about bread? What will you eat? I could never give up those things.
Which is when I politely offer the same response as when someone tells me You have to take shots? I could never do that! I’m not good with blood. I’m not good with needles!! Eeeeek!!!!
Lol. As if there is a choice.
My response: You would be surprised by the things you would do to survive.
Not being able to eat gluten isn’t the end of the world. It’s certainly the end of a world of mine, at least for now, the end of a more carefree world where I could drink beer and eat pizza and breadsticks and “only” have carbs and blood sugar and insulin to worry about. It’s another thing to worry about, to scan the Nutrition Facts for. It’s another thing to avoid and another health-thing to take up space in my head. But it’s not the end of the world.
When I was first confronted with the idea of a gluten-free life, back when I thought I had Celiac, my mom said, “So if that’s what it is, you’ll just have to re-adjust your lifestyle. It’s not like you haven’t had to do that before.” And that is what pisses me off. The fact that I have done it. I molded my entire life to a dramatic degree 9 years ago, upon diabetes diagnosis. I’ve done this. I’ve done it. And now, after being brave and positive and strong for so many years- now this too? This new obstacle, this new limitation?
There is absolutely no doubt in my mind that I can handle whatever is going on. Of course I can. Diabetes is a hell of a force to be reckoned with, and my skin is 1000x thicker for it. But I guess I’ve just always had the lightning doesn’t strike twice in the same place mentality.
And so it seems that, too, will need re-adjusting.
PS- If anyone has any awesome GF recipes/brand suggestions, send ’em my way please & thank you!