Dysautonomia Blog Series: TICCTHMFNS, Vol 2.0: Gluten-Free

Dysautonomia edition of Things I Can Control That Help Me Feel Not-Sucky/TICCTHMFS (the overview which you can read here) strikes again! We've covered Thought and Stress Management here and, um, here again (it was a big topic to try to talk about). And now it is time to address the love/hate relationship I have with gluten.


I feel like, before I start, I should let you know that I thought the whole "gluten-free" thing was bullshit. I mean like, really bullshit. Like, "here, pull my finger, it will be a good idea" bullshit.


So much bullcrap it's bullshit.

So much bullcrap it's bullshit.

I'm hoping that the more I say "bullshit", the more you guys will understand how much bullshit I thought it was.

So... um.... bullshit...

For the record, I have a friend who has Celiac's disease, which I knew was totally legitimate. But, other than that, I thought "Gluten-Free/gluten sensitivity" was a fad kinda thing. You know, like fanny-packs and Richard Simmons.

A year ago, I started seeing a most awesome chiropractor (which I will talk about in future TICCTHMFNS posts) who is very knowledgeable about dysautonomia/POTS, fibromyalgia, etc. and encouraged me to try gluten-free.

I think my response to her suggestion was, "Oh. Well, I'll think about that. Thank you!" (Internally: "BWAHAHAHAAHAHAHAAHA! Yeah right.") Bless her cotton socks, she sensed my hesitancy (read: blind-stinking refusal) and wouldn't let it go.

And, you know, when your quality of life has been miserable for so long, you often get to the point where you will try anything.... I was about two years past this point soooo, first I learned about what gluten is (sticky stuff) and what it's in (everything delicious). Then, I wailed and moaned to my husband for a couple of days about how stupid it was and that it wasn't going to work. And then, I went a day where I didn't eat anything with gluten in it.

That day I was MESSED UP.

I mean, really messed up. I was literally shaking, I could not string any sentences together, I was sweating randomly. I was out of it and it was scary. And I craved stuff with gluten like nothing before. Not the cravings you might get for tasty things, but literally like I was going through withdrawal. It was really, really messed up and I remember thinking, "Anything that makes me feel this bad when I stop it has to be doing something crazy to my body."

I'm a little stubborn, though (a.k.a. so bleepity stubborn it's ridiculous), so I chocked it up to tons of different other things because, well, it was bullshit, wasn't it? Just like Richard Simmons wearing a fanny pack asking me to pull his finger? And OH MY GOSH I wanted some freaking GLUTEN

But I kept with it for a couple days; I had read it can take some people months before they feel a difference. Thankfully for me (and for my husband), it was maybe Day 5 or 6 of Sarah's Gluten-Free/Uber-Grouchy-Beeeotch when I woke up one morning and it was like a fog had lifted. In every sense of the word. It was if something that had been weighing fuzzy on my mind had started to dissipate and I felt... clear. And, not only that, but I had... oh my gosh... is that a little bit of energy?! You HAVE to be kidding me!

I mean, my life changed. I started working 12 hour days and I was laughing and happy and able to THINK and stuff. I was still tired and worn out, of course, because I still had dysautonomia. But the brain fog had all-but gone; I felt like I had woken up from a long sleep. One day, I was trying to explain the feeling to someone and all I could come up with was: What if Superman was hanging around Kryptonite his whole life and felt like complete crap and thought that was how 'normal' felt?
(I know, I'm a nerd. Stay with me.) And then, suddenly, Kryptonite was gone and he was like, "Holy crap! I can jump over buildings and lift up unicorns and change really fast in telephone booths!"

It felt like that. And it felt so good I'm not going to be the least bit ashamed that I just used a Superman analogy to explain it.

I did some research during this time free from my glutonite (see what I did there? Gluten... plus Kyptonite... equals........ omg please keep reading my blog) in order to understand why this was happening and found a couple articles. Here is one of many which explained that, for some people, gluten can mimic the effects of heroin and morphine.

Haaang on a second. Gluten, literally, had been drugging me? Well... that definitely explains a LOT.

However, it took me about 4 or 5 months before I really, finally considered that this was all gluten's doing. During that period I tried little things here and there that contained gluten and, sure enough, I would feel groggy and drugged a few hours afterward, a day after, etc., but would still try to label it as something else. (I told you. Stubborn.)

To be honest, I don't exactly know when I finally accepted gluten-free as not-bullshit, but I imagine it was sometime around when I suddenly realized I was teaching full-time, had the thought capacity to write a book,  exercising with my puppies, and skipping around the house for 80% of my day.

It was sometime around when I realized I had started to live again.

Actual photo of me without gluten

Actual photo of me without gluten

Here's a little blurb, though: I am not a doctor. What has helped me may or may not help you. I have known people who tried GF and it made them feel worse so, if you have a doctor you can trust and talk to, please do that. Nutrition is extremely important, especially for people with dysautonomia, and not all gluten-free stuff is necessarily good for you. Also, cutting out gluten can make you accidentally cut out a lot of other necessary things your body needs, which can be dangerous. I went to see a nutritionist to make sure I could go gluten-free and still get all the nutrients I need. (This is ESPECIALLY important for me considering I dealt with an eating disorder in the past, and it's something people recovering from an ED need to be extremely careful about. In fact, I wouldn't recommend going GF if you're recovering without consulting a nutritionist/therapist, because it can reignite that part of the brain that focuses on food, etc.)

So, in summary, I thought it was bullshit and, for me, I was completely wrong; it is amazing how different I feel. I'm not cured, I still have dysautonomia. But this has given me just a little more with which I can fight.

And, to be honest, "a little more" is all I really need.

Plus, I can't totally think now and stuff! It's so awesome you guys! :)

- S