On Going Gluten-Free

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:

  1. Eat a radioactive egg sandwich (no, really)
  2. Lay under a machine for 2 hours to track radioactive lunch being digested

nuclear

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.

Nothing.

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.

Me eating gluten free cheese bagels while everyone else eats french toast

My breakfast: Gluten Free Cheese Bagels // Everyone else’s breakfast: Baguette-style French toast

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!

11 Comments

    • Sarah Grace Sarah Grace July 15, 2014 / 12:39 am

      I love these pancakes! I’ve made them so many times, and even posted about them on my blog once! Thanks 🙂

  1. Joana July 14, 2014 / 7:38 pm

    Hi Sarah! I started reading your blog just yesterday because of your post in Six Until me.
    I just came back now to get the name of the band you recommended – First Aid Kit – listening to them now – and saw your post.
    I´ve been a T1D for 3 years now and 3 months ago I went gluten and dairy free.
    I´ve always had migraines, since I can remember as a kid, but had a 15+ days crisis that almost drove me crazy. After many tests and exams, a doctor sugested I tried changing my diet.
    So far no more migraines, so I´m sticking to it.

    I felt the same you did but also after everything got a little better I noticed that it was also good for my relation with diabetes… as it got in its place or something. So much will happen – good and bad – that´ll be more important than diabetes, I had to learn that.

    So now I get to try many gluten free recipes! – try these cookies: http://detoxinista.com/2012/02/flourless-peanut-butter-chip-cookies/

    Sorry for the long comment!

    Joana

    • Sarah Grace Sarah Grace July 15, 2014 / 12:42 am

      I hope you like First Aid Kit! They are great.
      I agree, as much as it sucks to be gluten free… I will do anything to not feel as terrible as I’ve been feeling all summer. Thanks for reading, and thank you for the recipe 🙂

  2. Lisa July 15, 2014 / 11:46 am

    Sarah, I had the same thing happen to me. About 2 years ago, I got a horrible pain in my side, ulcers in my mouth, brain fog and exhaustion. I went to about 3 different doctors and they all said I was fine, no celiac or anything. I decided to try acupuncture for the pain. My first visit, I told her what was going on. She did a test where you hold a vial of something (this time it was wheat) in you hand and she pushes it down. I could not for the life of me keep my hand up. She told me to cut wheat and probably gluten out of my diet. I did and I feel so much better!!! Amazing that she could figure that out when modern medicine couldn’t! I’m glad you got it figured out.
    One thing to watch out for is how you absorb food now. I noticed that once I stopped gluten, I needed more insulin. I think my body is actually absorbing the nutrients (and all the carbs) now.
    Anyway, it’s not easy and sometimes I slip but feeling better is soooo worth it. Good luck!

    • Sarah Grace Sarah Grace July 15, 2014 / 3:13 pm

      Wow, that’s so cool that she figured it out with a vial of wheat! It’s funny that you mention food absorption because the very first weekend that I lost my appetite and all of these problems began…. my blood sugar was constantly low for 4 days straight. I stopped taking Lantus, Humalog, everything, and I could not for the life of me keep from going low, and I remember telling my mom “I feel like my body just isn’t processing food correctly.” So, maybe I was right. I’m just glad to feel better now. Thanks for reading! 🙂

  3. Briley July 15, 2014 / 2:42 pm

    I have a friend who was diagnosed with celiac before symptoms even showed. The thing that she tells everyone is that if you eat naturally gluten-free foods, it’s a very healthy diet. There are definitely some great blogs and people who eat gluten free out there, and I wish I could give you more. However, these are two blogs that I *think will have some ideas for you!

    http://candyheartsblog.org/

    http://www.sweetlyvoiced.com/

    • Sarah Grace Sarah Grace July 15, 2014 / 3:16 pm

      Naturally gluten-free is really healthy 🙂 And also a lot lower carb (since I’ve had to cut out bread, cookies, etc… a lot of stuff I prob shouldn’t have been eating anyways haha) Thanks so much for the blog suggestions, I can’t wait to check them out!

    • Sarah Grace Sarah Grace July 18, 2014 / 11:44 pm

      No I haven’t but my favorite cookie recipe in the whole world is choc chip sea salt so I will def have to give these a try! Thanks so much!

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