Gluten & Me

When I tell people that I am gluten-free, pretty much everyone asks why. It’s a fair question.

Many people are trying a gluten-free diet for a variety of reasons, from treating celiac disease to copying Gwyneth Paltrow. For me, it’s because I have a self-diagnosed gluten intolerance, which I feel I have to explain. My answer usually spills out as a rambling version of what you’re about to read. Basically, all this is what I would say if I spoke as well as I think I write.

Before I went gluten free, I had this long laundry list* of weird-but-not-urgent-and-seemingly-unconnected symptoms going on. They included:

  • Bloating (I would wake up with a flat stomach and go to bed looking 5 months pregnant)
  • Bowl movement issues, particularly a few uncontrollable bowl movements (yep, yuck)
  • Canker sores (big, painful ones, all the time)
  • Depression and mood swings
  • Fatigue and brain fog (I could not focus on simple tasks like driving, yikes!)
  • Gas (really stinky, clear the room gas)
  • Ocular migraines (those make you think you’re going crazy)
  • Rash, unexplained
  • Shaking, similar to someone with Parkinson disease (occurred since high school)

These things would come and go randomly, so I never really bothered to bring them up to a doctor. Truthfully, they were just starting to get worse (particularly the bowl movement issues and the fatigue) right around the time I decided to try the paleo diet. Deep down I knew there was something wrong, but it didn’t seem serious enough to worry about. To be honest, I had mentioned many of these symptoms separately to my doctors over the years, however alone they are just odd little things, so they mostly went overlooked.

Well, when I was getting in shape for my wedding I joined a Crossfit gym and was really introduced to the concept of eating paleo. Once I started reading about the paleo diet it clicked that all of these things I had going on might actually be because of what I was eating. I decided to give it a try, and went strict paleo for a month.

During my strict paleo month all of these symptoms went away. I had so much energy, I wasn’t bloated or running to the bathroom, and I stopped shaking. My shaking ended up being the most obvious and undeniable symptom that was magically fixed just by removing gluten.

Let me explain. Ever since high school, I’ve had the shakes. If I would hold my hand out, it would visibly tremor. If I had to hand something to someone, like a card or sheet of paper, the item would visibly shake with my hand, and I received my fair share of questioning looks (after all, what 20 something shakes like they have Parkinson Disease?). I developed the habit of putting my elbow down on a solid surface whenever one was available to reduce the visibility of my shaking, but otherwise didn’t think much of it (I just thought I drank too much coffee).

My little sister was the same way, and it use to drive my mom crazy. She blamed it on us drinking too much coffee (which made sense), and would constantly (in that worried mothering way) demand to know what we were doing wrong to make us shake. More sleep, less coffee. Truthfully, we ignored that advice because we were teenagers (and then college students), and more sleep and less coffee just wasn’t worth it. Well, after a few weeks of eating strict paleo, my shaking stopped. Completely stopped. Now it only comes back if I eat gluten or drink way too much coffee (which is like two cups these days since I usually don’t drink any).

Anyways, at the end of the strict paleo month I experimented with adding foods back into my diet to see how I reacted. It didn’t take long to decide that dairy was out, and so was gluten. Believe it or not I was thrilled! I felt amazing and was losing weight! Since my final wedding dress fitting was getting close, I decided to just stick to the paleo diet instead of trying to figure out how serious my gluten (and dairy) intolerance was. I was hoping to keep losing a bit more weight (I did) and then be able to maintain my weight so I could fit into my wedding dress (I didn’t, it had to be taken in again at the last minute).

Celiac disease runs in my family (my Grandma, Aunt and Uncle all have it), so it’s quite possible that I have it too. However, to have an accurate celiac disease test you have to have been eating gluten for up to three months. In hindsight I should have gotten tested for it before starting my strict paleo month, but the idea never really crossed my mind. Over the months that followed, I definitely accidently ate things that had gluten in them and paid the price. A single dose of gluten will make me feel awful for a week (and my shakes return). Dairy will make me feel bad for a few hours or maybe days, but my reaction to gluten is much stronger and much longer.

Well, after a few months of feeling amazing, there was no way I was going to make myself sick before my wedding or for that matter after my wedding. Since a single dose of gluten makes me feel awful for a week, so there’s pretty much no way I could eat it for three months just to take a test that may or may not confirm that gluten makes me sick (even if you test negative for celiac’s disease you can be gluten sensitive, and there’s not a test for that). So, instead of having a nice fancy diagnosis on my medical history form, I have a self-diagnosed gluten intolerance. Sure, some people think I’m making the whole thing up, but I tend not to worry too much about that.

A Bit of Advice

Now, I want to end my little story by noting that being gluten-free is not the same as being healthy. There are a ton of unhealthy, gluten-free options out there these days (processed? full of sugar? yuck!!). If you’re interested in trying a gluten free diet, I recommend talking to your doctor or nutritionist first (do as I say, not as I do) and then visiting and Celiac Disease Foundation.

If you are going gluten free, you should basically be suspicious of everything. Sure, there’s the obvious stuff like pasta (only eat if labeled gluten free) and pastries and bread. However, gluten is hiding in (or gets added into) all sorts of things, from soups (as a thickener) to soy sauce (it’s the second ingredient in the stuff)  to eggs served at restaurants (many put pancake batter in their scrambled eggs). Ideally, look for things that are labeled gluten free (which, may or may not mean anything) or ask a lot of questions.

Finally, I want to end with a list of commonly known ingredients that contain gluten. People constantly ask me what I need to avoid, and this list is a good start. Truthfully, I try not to eat processed foods with any ingredients that I can’t identify, but that’s not always possible. Usually if I can’t identify an ingredient I try to Google it. I know, not everything on Google is accurate, but I’ve still found it to be a helpful resources (just be smart about it). This isn’t at all exhaustive, however it is a good start.

Ingredients that contain gluten (from Mayo Clinic, and Celiac Disease Foundation):

Additionally, I always try to avoid these ingredients (unless it’s labeled gluten free) because they may contain gluten:

*I’ve spent alot of time researching how each of these are connected to gluten intolerance or celiac disease, however the best evidence I have is that they all went away when I removed gluten, and if I eat gluten many of them come back. For a more common list, please visit Celiac Disease Foundation and the Mayo Clinic. For a much more exhaustive list that will have you self diagnosing yourself and everyone you know, please visit The University of Chicago Celiac Disease Center or just google “Symptom X” and “Gluten”.

**Maltodextrin is weird. If it was made in the United States, it’s probably gluten free. However, it was made in another county (like Canada) it may have been made with wheat, and there often is no way of knowing the origin of the maltodextrin. It’s definitely on the extra cautious side.

***Not all seasonings or spices but food that contains the ingredient “seasonings” or “spices” instead of more specific information like “pepper” or “nutmeg”.

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